THE EXPERIENCES OF PARENTS WHO IMPLEMENT A

FLOORTIME INTERVENTION PROGRAM FOR A YOUNG CHILD WITH AN ASD

A dissertation submitted to The Wright Institute

Graduate School of Psychology in partial fulfillment of requirements
for the degree of Doctor of Psychology

by
KATHLEEN C. COLETTI, M.A.
MAY 2011

©2011
KATHLEEN C. COLETTI
ALL RIGHTS RESERVED
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 CERTIFICATION OF APPROVAL

I certify that I have read THE EXPERIENCES OF PARENTS WHO IMPLEMENT A

FLOORTIME INTERVENTION PROGRAM FOR A YOUNG CHILD WITH AN ASD

by Kathleen C. Coletti, and that in my opinion this work meets the criteria for approval of

a dissertation submitted in partial fulfillment of requirements for the degree of Doctor of

Psychology at the Wright Institute Graduate School of Psychology.

^>€*UC^ U L ^ , (Up . 5-/5-/,|

Beate Lohser, Ph.D. Date
Dissertation Chair

Anita Barrows, Ph.D. Date

Second Reader
 May 2011

THE EXPERIENCES OF PARENTS WHO IMPLEMENT A

FLOORTIME INTERVENTION PROGRAM FOR A YOUNG CHILD WITH AN ASD

by

KATHLEEN C. COLETTI

Floortime is an autism intervention program that relies heavily on parent

involvement and places unique emotional demands on the parents who use it. The

limited research on Floortime suggests that it is an effective treatment, but no studies

heretofore have investigated the impact of the model on parents. This study aimed to fill

in this research gap by examining the experiences and thoughts of parents who

implemented Floortime intervention programs with their young children with autism

spectrum disorders.

Being exploratory in nature, this study employed a qualitative research

methodology called interpretative phenomenological analysis, which aims to capture as

much as possible the lived experience of participants. Semi-structured interviews were

conducted with eight parents who initiated Floortime programs for their children with

autism spectrum disorders before the children turned 5 years old.

Research questions and emergent themes were arranged into five groups: (a)

themes related to finding Floortime, such as diagnosis reactions that surfaced during the

initial information-gathering stage, and the process related to choosing the model; (b)
themes associated with the early use of Floortime and parents' ability to cope; (c) themes

that pertained to the effects of Floortime on parents; (d) themes that concerned goodness

of fit, such as which values and personality traits seemed best suited to the model; and (e)

themes about parents' perceived support needs.

The findings showed that using the model greatly impacted parents on personal

and emotional levels and parents' emotional reactions could greatly affect the quality of

their interventions. Experiences tended to change over time, with most parents finding

that experiences got easier and all reporting interpersonal and intrapersonal changes.

Additionally, parents who were especially compatible with the model seemed to have

smoother experiences. Even though adopting the model required great personal sacrifices

on their part, parents reported high levels of treatment satisfaction. Finally, all parents

agreed that social support was critical to treatment success.

Potential clinical applications of the major findings were discussed, and a set of

clinical guidelines was proposed. Findings were compared to published literature,

strengths and limitations were discussed, and suggestions for future research were

presented.

ii
 Acknowledgements

I owe an immense debt of gratitude to many individuals for their help with this

study. I wish to thank my chair, Beate Lohser, who consistently engaged the material

with curiosity, keen insight, and remarkable clarity, and who supported me with immense

kindness and encouragement. Special thanks also to my second reader, Anita Barrows,

for her thoughtful feedback, positive attitude, and enthusiasm about my project.

I am incredibly grateful to my family for their love and unwaivering support. Ed

and Joyce Coletti were my constant cheerleaders throughout the writing process, and they

kindly listened to me rattle off endless anxieties and doubts.

I wish to thank Margaret for giving me my first introduction to Floortime and for

providing an important validity check for this study's results.

Thank you to Jenifer Toussant for transcribing my final interview.

Thank you to Ginny Morgan for her kindness and guidance along the way.

Big thanks to Anne Ingham, with whom I "met" almost weekly from the time this

project was merely a sliver of an idea to the time of its completion. Her understanding

and advice were instrumental in helping me finish in such a relatively short period of

time. I am also grateful to her for auditing my results.

I would like to thank Ashley Mullins for her loyal friendship throughout my

graduate school years. Her perspective and compassion were critical to my ability to

weather many a storm.

Many generously helped me develop my ideas for this project and/or assisted me

with my recruitment efforts. Thank you to: Stefanie Pass, Chad Kordt-Thomas, Alex

iii
Klein, Joanne Finn, Anatasia Kim, and the countless other professionals who volunteered

their time and ideas.

My biggest and most enthusiastic acknowledgement goes out to my husband,

Jason, who witnessed this project take shape every single small step of the way. I can

honestly say that none of this would have been possible without his sensitivity, humor,

patience, faith, and immense love for me. I thank him from the very bottom of my heart.

Finally, I am eternally grateful to the parents who participated in this study. I

consider myself so lucky to have heard their stories. They taught me a tremendous

amount about what it is to love and what it is to be a parent. This project is dedicated to

them.

iv
"As much as you are doing DIR with the child, you are really doing DIR with the
parent."

- "J", a parent

v
 Table of Contents

Chapter 1 1

Introduction 1

Chapter 2 6

Literature Review 6

Autism spectrum disorders 6

Treatment of ASDs 15

Parents of children with autism spectrum disorders 33

Summary of literature review 50

Chapter 3 54

Methods 54

Sample 57

Procedures 64

Data analysis 69

Presentation of data 70

Validation measures 70

Notes on assumptions 73

Chapter 4 76

Results 76

The participants 76

vi
 Clusters and themes identified 78

Cluster 1: Finding Floortime 82

Cluster 2: Doing Floortime 93

Cluster 3: Effects of Floortime 126

Cluster 4: Goodness of fit 134

Cluster 5: Support needs 142

Chapter 5 153

Discussion 153

Summary of major findings 154

Comparison of findings to published literature 161

Clinical implications 167

Strengths and limitations of the study 174

Suggestions for future research 178

Conclusions 180

References 182

Appendices 192

A: Acronyms 192

B: ASD Diagnostic Criteria 193

C: Functional Emotional Developmental Levels (FEDLs) 197

D: Recruitment Email/Letter 199

E: Recruitment Flyer 200

vii
F: Letter of Introduction 201

G: Letter of Consent 203

H: Demographic Questionnaire 205

I: Referral List (local) 208

J: Referral List (national) 210

K: Nondisclosure Agreement (for transcribers and auditors) 211

L: Interview Schedule 212

M: Coded Transcript Example 216

viii
 List of Tables

Table 1: Participant Demographics 60

Table 2: Child Characteristics 61

Table 3: Characteristics of Floortime Use 63

Table 4: Clusters/Sections and Superordinate Themes Identified in Participant

Responses 80

Table 5: Superordinate Themes for Cluster 1: Finding Floortime 82

Table 6: Superordinate Themes for Cluster 2: Doing Floortime 93

Table 7: Superordinate Themes for Cluster 3: Effects of Floortime 126

Table 8: Superordinate Themes for Cluster 3: Goodness of Fit 134

Table 9: Superordinate Themes for Cluster 3: Support Needs 142

Table 10: Major Findings 143

Table 11: Clinical Guidelines 154

ix
 1

Chapter 1

Introduction

Autism Spectrum Disorders (ASDs) are lifelong neurodevelopmental disorders

that are typically diagnosed in early childhood (American Psychiatric Association [APA],

2000; Centers for Disease Control and Prevention [CDC], 2010). They are characterized

by impairments in social and communication development, along with stereotyped

interests and behavioral patterns that can cause further impairment in social functioning.

The incidence of ASDs is on the rise and shows no sign of subsiding. The disorders

currently occur in approximately 1 in 110 children in the United States. As a

consequence, countless families are impacted by the disorders every day.

Upon receiving a diagnosis of an ASD for a child, parents are unexpectedly thrust

into new ways of being, feeling, and thinking about their child, themselves, and their

families (e.g., Abbeduto, et al., 2004; P. R. Benson & Karlof, 2009; Dumas, Wolf,

Fishman, & Culligan, 1991; Gray, 2002). For most, the initial experience of the

diagnosis is jarring. Dreams for the future change in an instant. For others, it is an oddly

relieving confirmation of a long-held suspicion that something about their child was just

not right. Regardless, receiving a formal diagnosis can set off a tumultuous series of

emotional reactions that, while unique to each individual parent, share some common

themes. A typical trajectory begins with intense emotional reactions such as guilt, anger,

depression, and profound stress, followed by acceptance, mobilization of resources, and

eventual adaptation. However, emotional struggles do not simply fade away when

parents adjust to their new realities. More commonly, difficult feelings linger and impact

a parent's self-concept, life quality, and ways of relating to his or her child.
 2

One of the first tasks a parent of a newly diagnosed child faces is the decision of

how to treat the child's symptoms and behaviors. It is widely known that intensive, early

intervention is critical for the maximization of therapeutic benefits for children with

ASDs (e.g., Dawson, 2008; Guralnick, 1998; Rogers, et al., 2006). This means that

parents, in the midst of their initial reactions to the diagnosis, must promptly choose,

implement, and adapt to a treatment approach. In many cases, these parents are

confronted with a vast array of existing treatment modalities, which draw from a range of

different theoretical models and therapeutic approaches.

Increasingly, parents are turning to home-based intervention programs, as

growing evidence suggests that children respond best to treatments that take place in

naturalistic settings and emphasize development in the context a child's primary

relationships (e.g., Greenspan & Wieder, 2006; Lord, 2001; Rogers, et al., 2006).

Understandably, home-based programs impose unique time and energy demands on the

entire family. Parents in particular are confronted with stressors that test their parenting

capacities and often interfere with their ability to sensitively respond to their children at

the very time when parent involvement is most crucial (e.g., Abbeduto, et al., 2004;

Dumas, et al., 1991; Gulsrud, Jahromi, & Kasari, 2010; Hoffman, Sweeney, Hodge,

Lopez-Wagner, & Looney, 2009; Siller & Sigman, 2002). Poor parental well-being can

interfere with the quality of treatment provision, in turn compromising the integrity of a

child's treatment. Ultimately, it is not only the child who suffers when treatments fail;

the entire family suffers. Research is therefore needed about the experiences and needs

of the entire family rather than the child alone (e.g., Lord, 2001; Wehman, 1998; K. R.

Williams & Wishart, 2003).

 3

To date, children with ASDs and treatments for ASDs have been studied

extensively and continue to receive considerable scholarly attention. However, recent

literature has drawn attention to the overall scarcity of information available about

parental involvement in children's early intervention programs (e.g., Grindle, Kovshoff,

Hastings, & Remington, 2009; Lord, 2001), as well as how service providers can be more

proactive in supporting the emotional well-being of these parents (e.g., Lord, 2001;

Wehman, 1998; K. R. Williams & Wishart, 2003). Few studies reviewed for this project

mention parents' emotional reactions to adopting developmental interventions for a child

with an ASD.

The current study proposed to contribute to the extant literature by specifically

examining emotional experiences encountered by parents who facilitate developmental

models, which are approaches that employ naturalistic practices and relational techniques

to support a child's unique developmental needs. It focused on Floortime1, a preeminent

developmental intervention model with proven efficacy and widespread use (e.g.,

Greenspan & Wieder, 1997, 2005; R. Solomon, Necheles, Ferch, & Bruckman, 2007).

Floortime aims to help children with ASDs relate, communicate, and think by utilizing a

form of play therapy tailored to a child's unique challenges, strengths, and needs

(Greenspan & Wieder, 2003, 2006). It is a method that values the child's emotional

world and encourages the interventionist to honor and engage the child's natural interests.

The Floortime interventionist strives to meet the child at his or her particular

developmental level, all the while challenging him or her to move up a "developmental

ladder" of increasing emotional, social, and intellectual mastery. Compared to many

1
DIR/Floortime practices are commonly referred to as simply "Floortime." This study will use
"DIR" and "Floortime" interchangeably.
 4

other prevalent early intervention models for ASDs, Floortime is considerably more play-

based and far less structured. It relies on the use of relationship as a vehicle for change

and emphasizes the importance of affective interactions in the emotional development of

a child.

Another key element that differentiates Floortime is its emphasis on the parent-

child relationship. Home-based Floortime programs typically involve considerable direct

parental involvement. Families are strongly encouraged to integrate Floortime

techniques into their daily routines, and the parent is essentially recruited to be the child's

most important therapist. In this way, Floortime is intimately woven into the life of a

family.

Among other facets of Floortime, this study was concerned with how individuals

negotiate and respond to their dual role as parent and treatment provider to a child with

an ASD. It was interested in how parents simultaneously reckon with the realities of

parenting a child with an ASD and respond to the emotional demands unique to

Floortime. At this time, no other studies focus on these or other questions about the

emotional demands, benefits, and consequences for parents of implementing

developmental models. Meanwhile, there is a current trend in the United States toward

increased parental involvement and more use of naturalistic methods in all ASD

treatments, not just the developmental interventions (Lord, 2001).

This study used a qualitative approach to glean subtle themes and nuances about

parents' experiences of implementing an intensive Floortime program for a young child

with an ASD. Semi-structured interviews invited parent participants to reflect on their

experiences with the model, asking questions such as: What is the early experience of
 5

finding Floortime like, and why does it appeal to some parents? What is the process of

learning and using the model like? What are the effects of using the model? What types

of parents seem best suited to the model? Finally, what kinds of support do parents

need—particularly from Floortime professionals? The study captured meaningful

similarities and differences between the participants' accounts, and it aimed to speculate

about potential causes for variability.

The people in the lives of children with ASDs cannot be neglected, especially as

the rate of autism diagnoses skyrockets and parents increasingly participate in their

children's ASD treatments. Many families who utilize Floortime work with a team of

professionals trained to coach parents and their children in the model. The current study

offers information about parents' emotional experiences that could help clinicians deepen

their understanding of these parents, guide clinical interventions, and ultimately better

meet their clients' needs. The findings could help these professionals better support

parents to be effective and creative facilitators of their child's optimal development and,

as a result, improve the overall well-being of children with ASDs and their families.
 6

Chapter 2
Literature Review
Autism spectrum disorders. Our understanding of the features and causes of

ASDs is not keeping pace with the alarming rate at which the conditions are increasingly

diagnosed. Researchers are in the process of uncovering a complex web of interacting

variables that challenge the capacities of children with ASDs to relate and play. The

consequences are vast, as it is through relating and playing that young people learn about

themselves and the world. Neurological development also relies on these early

interactions with the world and others. If opportunities are missed, windows are closed,

and development falters. In the meantime, the quality of relationships between children

with ASDs and their families suffers more than necessary.

Diagnostic criteria. Autism spectrum disorders (ASDs) are neurodevelopmental

disorders that delay or complicate the development of basic human behaviors, such as

social interaction, communication, and an array of emotional, sensory, cognitive, and

motor capacities (Greenspan & Wieder, 1998, 2006). The American Psychiatric

Association's (APA) Diagnostic and Statistical Manual (DSM) (APA, 2000) includes

autism spectrum disorders (ASDs) in its classification of pervasive developmental

disorders (PDDs). PDDs are "characterized by severe and pervasive impairment in

several areas of development: reciprocal social interaction skills, communication skills,

or the presence of stereotyped behavior, interests, and activities" (APA, 2000, p. 69).

Other PDDs include Rett's disorder and childhood disintegrative disorder. ASD is an

umbrella term used to describe three other PDDs: autistic disorder, Asperger's disorder,
 7

and pervasive developmental disorder not otherwise specified.2 ASDs share similar

symptoms but differ in their onset, severity, and nature (CDC, 2009). As the name

suggests, autism spectrum disorders occur on a spectrum with great variability in

symptom presentation from one child to the next. Individuals with ASDs vary from

gifted to severely challenged, reflecting a range of thinking and learning abilities. A

child who exhibits only a few symptoms in quite subtle forms might be described as

having high functioning autism, whereas a child with profoundly disabling symptoms or

a large number of symptoms might be described as having low functioning autism.

Overview of symptoms. Individuals with ASDs typically exhibit "core problems"

(Greenspan & Wieder, 2006, p. 5) in areas of social and communicative functioning (e.g.,

gaze aversion; isolated play; difficulty understanding others' subjectivities; language

delays or complete lack of language). Some of the most widely-recognized hallmarks of

autism include "secondary symptoms" (p. 6) such as: stereotyped and perseverative

behaviors (e.g., spinning a top for hours at a time; obsessively lining up objects); a

narrow range of interests (e.g., a child who will only play with toy trains; refusal to play

with novel objects); echolalia (e.g., verbal repetition of what is heard; repetition of

scripted dialogue from a favorite television show); and self-stimulating behaviors (e.g.,

hand-flapping; staring at lights). Many children with ASDs exhibit behaviors that pose

potential dangers to themselves or others (e.g., self-injury; elopement; aggression). Some

other features that can go with ASDs include seizures, mental retardation, sensory

processing problems (e.g., over- or under-reactivity to sound, touch, or light), and motor

The term "autism" will be used interchangeably with "autism disorder" and "ASD" at times in
this study, as is common in the ASD literature. See Appendix B for the DSM criteria used to
classify the three ASDs.
 8

planning impairments (Greenspan & Wieder, 2006; National Institute of Mental Health

[NIMH], 2010; Thomas, Ellis, McLaurin, Daniels, & Morrissey, 2007). Ultimately, an

individual's unique symptoms combine to create serious difficulties in establishing

relationships, forming imaginative thoughts, expressing feelings, and functioning

independently in the world.

Developmental course in early development ASDs are present at birth, but

symptoms are usually not discerned until a child reaches toddlerhood. Parents typically

identify ASD symptoms before their child turns 3 years old, with many detecting a

number of common "red flags" (Wetherby, et al, 2004, p. 489). For instance, it is

common for parents to worry that their toddler is slow to talk, or they might grow

concerned when their small child does not like to cuddle or play with them. Nine other

significant red flags that distinguish 2-year-olds with ASDs from their same-age peers

with other developmental delays include: (a) lack of appropriate gaze; (b) lack of warm,

joyful expressions with gaze; (c) lack of sharing enjoyment or interest; (d) lack of

response to name; (e) lack of coordination of gaze, facial expression, gesture, and sound;

(f) lack of showing; (g) unusual prosody; (h) repetitive movements or posturing of body,

arms, hands, or fingers; and (i) repetitive movements with objects. Some children fail to

ever reach critical developmental milestones, while others develop on a typical trajectory,

only to experience a regression that involves the loss of significant developmental gains

(e.g., language and social skills) around 15 to 25 months old (Werner & Dawson, 2005).

In most cases, the deficits of ASDs persist throughout the lifespan, though they can

attenuate with treatment (Greenspan & Wieder, 2006; Lord, 2001).

 9

History. Asperger's disorder was first described in the 1930s by the Austrian

pediatrician Hans Asperger, but it was not distinguished from autism disorder until the

1980s. Autism was first identified as a disorder in 1943, when Leo Kanner (1943)

classified the symptoms of "early infantile autism" in a seminal article entitled, "Autistic

Disturbance of Affective Contact." Prior to the publication of Kanner's article, children

who would be deemed autistic today were labeled mentally retarded or emotionally

disturbed. Kanner introduced a theory that autism is the result of cold parenting,

claiming that of the parents he encountered in his study, there were "few warmhearted

fathers and mothers" (p. 250). This misconception was perpetuated for many years by

influential thinkers such as the psychoanalyst Bruno Bettelheim, whose term "refrigerator

mother" (Frith, 2003, p. 30) popularized the notion that mothers' emotional coldness

could cause autism and schizophrenia in their children (See also Bettelheim, 1967). The

idea that aloof parenting causes autism was eventually discredited in the 1960s, but not

before it had pervaded psychology literature and mainstream thinking, resulting in

stigmas that continue to adversely affect parents' sense of themselves as parents today.

Prevalence. In the years since the disorder was first documented by Kanner, the

classification, scholarship, and public awareness of ASDs have evolved dramatically.

Meanwhile, the prevalence of children with autism continues to increase at a rapid pace.

In California, recent research conducted at the M.I.N.D. Institute, University of

California, Davis, showed that the rate of autism incidence in American children rose

seven to eight times between 1990 and 2006 (Hertz-Picciotto & Delwiche, 2009).

According to the Centers for Disease Control and Prevention (CDC), between 2009 to

2010, the estimated average number of children with ASDs in the United States increased
 10

from 1 in 150 to 1 in 110, which is the agency's current estimate (CDC, 2009, 2010).

Roughly 36,500 children are born with ASDs every year in the United States (2010). The

disorders are 4 to 5 times more common in boys than girls, and they are present in

children from all racial, ethnic, and socioeconomic groups. Many people attribute the

increased prevalence of ASDs to increased public awareness and improvements in

diagnostic techniques, while others maintain that the disorder itself is increasing

(Greenspan & Wieder, 2006).

Potential causes. Theories about ASDs have progressed from the early models

that attributed autism to bad parenting to contemporary theories that assume biological

causation. However, the exact causes of ASDs remain unclear. In the last decade, a

lively debate has centered on whether environmental factors such as toxins and vaccines

are responsible for the surge in diagnoses (Dawson, 2008; Greenspan & Wieder, 2006;

Lord, 2001). A growing consensus in the scientific community suggests that ASDs do

not have a single cause, but instead result from multiple interacting variables that

combine to create cumulative risks that are different for each individual. Some of the

possible variables currently under investigation include genetic, epigenetic, neurological,

developmental, and environmental factors. This increasingly popular "multifactor,

cumulative risk model" (Greenspan and Wieder, 2006, p. 396) proposes that the different

pathways leading to ASD syndromes begin with primary predispositions. It hypothesizes

that predispositions are based on genetic factors, autoimmune problems, and

developmental processes in pre- and post-natal development, and that the genetically

predisposed individual may develop an ASD if he or she is exposed to toxins or other

stressors during early development. Greenspan and Wieder (2006) add the possibility
 11

that primary predispositions and stressors lead to secondary problems with affect. In

their "Affect Diathesis Hypothesis" (p. 398), they describe a "downstream effect" (p.

397) in which some key ASD symptoms (e.g., deficits in empathy, abstract thinking,

reciprocal interaction, and communication) stem from a primary deficit in an infant's

ability to link emotion and intention to motor planning, sequencing, sensations, and

symbolic thinking.

ASDs and relationships. This section provides a brief summary of the specific

ASD traits most commonly noted in the literature for their interference with a parent's

ability to engage a child.

Perhaps the most debilitating features of ASDs are those that interfere with

attaining and maintaining reciprocal social activities and relationships (Rogers, 2000).

Most early childhood development experts agree that reciprocal social engagement is a

critical precursor to learning and physical development (Greenspan & Wieder, 2006).

Greenspan states: "[A] child learns causality and logic—how and why things happen—by

signaling to a parent with expressions, sounds, or gestures and getting a response. For

this learning to occur, the child has to be engaged" (p. 66). In recent years, experts have

developed increasingly sophisticated insights into impairments in areas that are critical to

reciprocal interaction and the development of satisfying relationships. These include

joint attention, affective sharing, empathy, attachment, language, and speech.

Joint attention. Joint attention is a capacity that is necessary in order for a child

to acquire language, which involves the coordination of shared visual attention between

the child, another person, and an object or event (Bono, Daley, & Sigman, 2004;

Rutherford, Young, Hepburn, & Rogers, 2007). Whereas repetitive behaviors and
 12

numerous other symptoms are rarely observed before a child with an ASD is 2 years old,

autism can be detected in children who exhibit irregular development of joint attention

during their second year (Charman, et al., 1997; Rutherford, et al., 2007). Some joint

attention deficits common in autism include: unresponsiveness to verbal bids for

attention, even when the child's name is called; minimal attempts to direct another

person's attention to an object or other interest; and absence of pointing and other

gestures intended to communicate interest (Bieberich & Morgan, 2004).

Affective sharing. Joint attention problems are associated with problems with

affective sharing, the exchange of affective experiences in relation to objects and events.

When children with ASDs do engage in joint attention tasks, they often do not express

the levels or range of positive affect expected of typically developing children and

children with down syndrome (Kasari, Sigman, Mundy, & Yirmiya, 1990). Furthermore,

atypical affective responses can have an adverse effect on overall affective exchanges

with caregivers. During face-to-face interactions with his or her mother, a child with an

ASD is less likely than a typically developing child to smile in response to his or her

mother's smile, and a child with autism is less likely to combine eye contact with a smile

in an act of purposeful communication with his or her mother (Dawson, Hill, Spencer,

Galpert, & Watson, 1990). In turn, mothers of children with autism smile less than

mothers of typically developing children during these interactions.

Empathy. Many children with autism exhibit deficits in 'theory of mind' and

empathic responsiveness, two additional capacities necessary for the development of

emotional closeness and basic social skills (Baron-Cohen, Leslie, & Frith, 1985;

Charman, et al., 1997). Theory of mind is the cognitive ability to imagine the contents of
 13

a person's mind (one's own mind or another person's mind), such as thoughts, feelings,

desires, and beliefs (Baron-Cohen, et al., 1985). A theory of mind underlies the capacity

for self-reflection, a key prerequisite for empathic awareness. A related deficit in

reciprocal interaction involves imitation. Children with autism are less likely than other

children to spontaneously imitate another person's gestures and play behaviors, which

contributes further to their preexisting learning and relational difficulties (Ingersoll &

Gergans, 2007).

Attachment. Contrary to popular belief, children with ASDs have the capacity to

attach to others; however, their attachment behaviors differ from those of their typically

developing peers (Hoffman, et al., 2009; Marcu, Oppenheim, Koren-Karie, Dolev, &

Yirmiya, 2009). Whereas mothers of children with ASDs do not differ from mothers of

typically developing children in their reports of emotional closeness to their children,

research has shown that mothers of children with ASDs who have more problem

behaviors report less closeness to their children (Hoffman, et al., 2009).

Language and speech. Several communication deficits common in ASDs also

contribute to social dysfunction. Deficits exist in nonverbal and verbal communication

factors, such as speech characteristics and speech comprehension. Failure to develop

verbal communicative skills is a common early indicator of a possible ASD. For

instance, an infant with an ASD might fail to develop age-appropriate babbling. When

children with ASDs can speak, it is often difficult for another person to synchronize

communications and converse with them due to the rigid and stereotyped quality of their

verbal speech content and/or the melodic and prosodic features of their speech quality.

Furthermore, individuals with ASDs often have a difficult time understanding other
 14

people's communications. For instance, it is common for someone with an ASD to not

register and comprehend pragmatics, such as body language and facial expressions.

ASDs and play. Another broad area that can compromise social engagement for

children with ASDs is play. The early play behaviors of children with autism differ from

those of typically developing children in qualitative and quantitative ways (Jarrold,

Boucher, & Smith, 1996; E. Williams, 2003). At approximately one year of age,

typically developing infants graduate from simple, solitary object exploration to more

complicated, relational play that involves combining multiple objects in new ways as

they begin to develop the rudiments of functional play (E. Williams, 2003). This more

complicated play style involves repetitive, intentional use of objects for their socially

conventional purposes. Over time, functional play takes on more symbolic meaning and

increasingly involves others. Studies have shown that relative to their typically

developing peers, children with autism exhibit simpler, more rigid, and stereotypical play

with objects, and they engage less often in functional play and person-directed play.

When they do participate in functional play, object use is predictably less appropriate,

more repetitive, and more restricted. It is also well documented that autism is responsible

for profound deficits in pretend play, though recent research suggests that children with

ASDs are capable of pretend play but have difficulty generating symbolic play ideas

(Charman, et al., 1997; Jarrold, et al., 1996; Rutherford, et al, 2007; Yang, Wolfberg,

Wu, & Hwu, 2003).

The features of ASDs that combine to create serious problems with social

interaction can have deleterious effects on the parent-child relationship. For instance, a

parent's struggles to relate to a child without the benefit of much positive feedback can
 15

erode the parent's morale and sense of parenting competence. The next section of the

literature review, "Treatment of Autism Spectrum Disorders," will highlight the

importance of interventions and survey the myriad available treatment options. The final

section, "Parents of Children with Autism Spectrum Disorders," will further discuss

implications for parental well-being and the parent-child dyadic relationship. It will

argue that challenges in these areas likely make a demanding, play-based intervention

like Floortime especially difficult to master and cope with emotionally.

Treatment ofASDs. There is widespread agreement that ASDs are most

effectively treated when diagnoses and treatments occur as early in the lifespan as

possible, with more and more experts advocating for detection and treatment in early

infancy. The vast and variable symptoms ofASDs are treated with an array of

interventions, ranging from specialized diets to auditory integration training. Most

intensive programs for these young children include a comprehensive early intervention

therapy, which is typically provided by a team of professionals and family members. In

the last 50 to 60 years, parents' roles in the therapies of their children with ASDs and

other disabilities have changed dramatically, with a general shift toward greater parental

involvement in the planning and implementation of treatments, many of which take place

in the family home (Wehman, 1998). The evolution toward more family-centered

approaches has paralleled advancements in the academic and public awareness of the key

role environment plays in early infant and child development. With the growing

evidence of the importance of play and relationship in the development of all infants and

children, including those with ASDs, most contemporary interventions have integrated

child-directed, relational practices into their methods. Perhaps the most notable of these
 16

practices are relational-developmental interventions such as Floortime, which will be

described in detail below.

Importance of early detection and early intervention. Literature about early

childhood development stresses the rapid rate of development that takes place early in

life, evidencing a critical period between ages 0 and 5 when the brain has an especially

high degree of plasticity and is therefore optimally primed for language acquisition and

other forms of learning (Dawson, 2008; Guralnick, 1998). The literature details

numerous neurological consequences that can result when certain developmental

milestones are not achieved during critical developmental windows. Of particular

consequence to children with ASDs is the discovery that a young child must engage

socially in order to develop early speech and the neurological circuitry necessary for a

"social brain" (Kuhl, 2007).

Studies show that intensive early interventions can prevent developmental

regressions, or at least substantially mitigate developmental delays, in children with

ASDs (Guralnick, 1998), and autism experts increasingly tout the importance of early

detection and early intervention (CDC, 2010; Lord, 2001; NIMH, 2010). Pediatricians

and other service providers advise parents to seek a prompt evaluation upon identification

of common first signs of autism, and if their child is diagnosed with (or seriously

suspected to have) an ASD, to initiate treatment immediately (Lord, 2001). In the

medical world, it is largely accepted that diagnoses are not reliable unless assigned

around or after age two. However, many studies highlight the usefulness of earlier

detection, diagnosis, and intervention (Dawson, 2008; Vismara & Rogers, 2008). Until a

child is diagnosed, he or she is generally not eligible to receive appropriate publically

 17

funded intervention services, which many believe are critical to the prevention of further

problems later in life (Moore & Goodson, 2003). These factors contribute to the many

intense pressures commonly experienced by parents during the period of time around a

child's diagnosis.

Treatment overview. There is no one-size-fits-all approach to treating autism.

Because each child's physical and emotional needs are so different, parents must pick and

choose from the myriad available treatment options, all of which promise to reduce

symptoms and promote development. There are four major treatment categories: dietary

approaches, medications, complementary and alternative medicine, and behavior and

communication approaches. Common dietary approaches include gluten- and casein-free

diets. Some medications used to treat select ASD symptoms (e.g., obsessive-compulsive

features, extreme aggression, seizures, tantrums, and depression) include antipsychotics,

mood stabilizers, and antidepressants (CDC, 2010). Among the controversial alternative

treatments are body-based systems (e.g., firm touch applied to children with under-

reactive sensory profiles), alternative medicine, and biomedical interventions (e.g.,

vitamin and mineral supplements; chelation therapy, and biologicals). The fourth

category, behavior and communication approaches, includes structured therapies that

incorporate some amount of family participation (NIMH, 2010). Examples include

occupational therapy, speech therapy, sensory integration therapy, and therapies that use

symbols to teach communication (e.g., Picture Exchange Communication System

[PECS]), and behavior and communication therapies (Ayres, 2005; CDC, 2010).

Definition of terms: Intensive, early, and home-based interventions. This section

focuses on two of the most prevalent intensive behavior and communication therapies:
 18

Applied Behavioral Analysis (ABA) and the developmental model Floortime. Both are

"comprehensive early intervention models for teaching social interactions" (Lord, 2001,

p. 79), which often have the following three major logistical characteristics:

/. Early. Most early interventions commence before a child is 5 years old. In

many states, grants and public funds finance a qualified child's early

intervention treatments until the child turns 3 years old, at which time special

education responsibilities are turned over to local school districts. The mean

age of entry into most well-accepted comprehensive programs ranges from 30

to 47 months of age.

2. Intensive. An intervention program is deemed intensive when it consists of at

least 25 hours per week of structured, goal-directed activities, typically

delivered to young children in brief intervals nearly every day (Lord, 2001).

To be intensive, the intervention must match the child's chronological age and

developmental level with highly individualized educational programming,

preferably in a one-to-one teacher to student ratio or small group setting.

Effective intensive interventions include parent training and other family-

centered features that target the child and family's unique set of needs, as

opposed to offering predetermined services.

3. Home-based. Beginning in the 1970s with a proposal from Lovaas that

interventions strive to teach skills that are generalizable to the child's home

environment, there has been a trend of situating interventions in the family

home. In some home-based interventions, parents primarily act as the

overseers and managers of programs in which clinicians and paraprofessionals

 19

rotate in and out of the home to facilitate the majority of the direct

intervention. In others, parents act as their child's sole therapist.

Parent implementation. It is increasingly common for parents to assume roles as

primary interventionists or "co-therapists" in their children's treatment programs, taking

on roles that were traditionally reserved for professionals. During the last several

decades, service providers have gradually started to work more collaboratively with

parents, and they have modified their approaches to include more parent support and

parent education (Mahoney et al., 1999). However, the trend of parent-implemented

intervention only dates back as far as the 1970s (Schopler & Reichler, 1971; Wehman,

1998). But then, it was still rare for professionals to team up with parents, let alone

consider or seek parents' questions and participation; thus, the onus was most often on

the parents to assert their needs and points of view. Professionals conveyed largely

pessimistic prognoses for children with autism, and parents were discouraged from

feeling hopeful about their children's prospects for leading satisfying, independent lives

(Guralnick, 2000).

A history of intervention trends. A "forget and hide" (Caldwell, B.M., as cited in

Wehman, 1998, p. 80) attitude characterized the approach to children with disabilities

during the first half of the 1900s, when the custom was to eliminate family

embarrassment by keeping the child's condition private and excluding the child from

public view. The approach in the 1950s and 1960s was to "screen and segregate" (p. 80)

children with disabilities. Children with disabilities were thought to be incapable of

independence and in need of constant care, so they were tested, identified as disabled,

and sent to institutions. Until the mid-1970s, parent involvement in early interventions
remained extremely limited. In the second half of the 1970s, an "identify and help" (p.

80) tactic was ushered in by the passage of the Education for All Handicapped Children

Act of 1975, a key piece of legislation that established a national special education

program. Parent involvement increased between the late 1970s and early 1980s.

Although the parental role in treatments remained unclear, parents were increasingly

treated as participants in their children's programs. In the mid-1980s, intervention trends

began to move away from a child-centered focus to a family-centered focus. As such, the

role of parents shifted from participants to clients or recipients. The passage of multiple

pieces of state and federal legislation reflected a growing public consensus that young

children must be considered in the context of his or her family. Perhaps the most

significant pieces of legislation were the Disabilities Education Act Amendments of

1991, which passed through the Individuals with Disabilities Education Act (IDEA).

Today, some form of parent participation is formally incorporated into most widely

supported, empirically-validated intervention models for children with ASDs (Lord,

2001; Lord, etal., 2005).

The arc of early intervention history reflects impressive scholarly developments

that highlight the interplay of child development with environmental factors, such as

family stress and the quality of child-parent interactions. Theories about early childhood

development have been revolutionized in the last 50 to 60 years by evidence of the many

capabilities of the infant and by indications that development is largely shaped by early

experiences, namely early social experiences with primary caregivers. One relatively

new conceptual framework thought to contribute to contemporary child- and family-

centered treatment trends is the transactional development model (Wehman, 1998),

 21

wherein infant-parent interaction is viewed as a transactional system of back and forth

exchanges between an infant and his or her primary caregivers (Tronick, 1989; Tronick &

Gianino, 1986; Wehman, 1998). It asserts that beginning at birth, an infant's effect on

his or her parent impacts the quality of the parent's physical and affective responsiveness.

In turn, the degree to which a parent responds sensitively impacts the infant's response,

thereby creating a perpetual feedback loop. Because infants and toddlers with ASDs

demonstrate impaired social functioning, they often do not reciprocate or they reciprocate

abnormally, and parents are left not knowing how to respond sensitively (Hutman, Siller,

& Sigman, 2009; Wachtel & Carter, 2008).

By 2000, a robust service delivery system had been established, which included

widespread community resource supports aimed at connecting children to appropriately

coordinated services, community-disseminated information, and social supports for

families (e.g., support groups, therapy services, and information about how to create

social networks) (Guralnick, 2000). Guralnick reflected on the benefits of this

comprehensive service implementation, noting ways that it moderated parental stress and

afforded parents the benefits of increased confidence in their parenting efficacy. He

wrote:

In a real sense, parents' confidence grows with the recognition that,

despite stressors associated with their child's disability, they are still able
to engage in high-quality parent-child transactions, orchestrate their
child's experiences so as to maximize developmental outcomes, and
ensure the health and safety of their child, (p. 71)

However, shortcomings still existed in the ways parents were and were not involved in

treatments. In the past decade, there has been a movement for the service delivery
 22

system to better educate parents about autism and their role in early intervention in such a

way that families' unique needs are addressed (Guralnick, 2000; Mahoney, 1999).

Intensive behavior and communication therapies. When parents set out to locate

a comprehensive early intervention program for a child with an ASD, they confront a

slew of options that often represent different—and sometimes conflicting—theoretical

frameworks. A parent's choice depends on a variety of factors, such as the amount of

public funding available for the intervention, the child's unique developmental

difficulties and needs, and the parent's values and beliefs. This section will describe two

categories of treatment models currently prevalent in the United States: behavioral and

developmental interventions (El-Ghoroury & Romanc2yk, 1999; Keen, Rodger, Doussin,

& Braithwaite, 2007; R. Solomon, et al., 2007). ABA and the developmental model

DIR/Floortime are especially known for their strong theoretical foundations (Lord, 2001).

Applied Behavioral Analysis. During the last three decades, behavioral treatments

have been the most widely accepted, empirically-validated interventions for children with

ASDs. The most prevalent behavioral model uses ABA, a systematic, measurable

behavioral modification system that uses operant learning strategies to help children alter

symptoms and behaviors (Lord, 2001). In the 1960s, a behavioral psychologist named

Ivar Loovas developed an autism treatment model based on ABA principles.3 Lovaas

theorized that individuals are more likely to repeat rewarded behaviors than ignored

behaviors. ABA applies this principle with a highly structured, skill-targeted teaching

technique called Discrete Trials Training (DTT) which aims to help children relinquish

problematic behaviors and master language and socialization skills (Lovaas, 1987).

Lovaas' model is known popularly as ABA even though ABA is not specific to autism.
 23

Much of ABA's popularity can be credited to its rapid, quantifiable results

(Sheinkopf & Siegel, 1998), which tend to reflect significant short-term successes (Lord,

2001). In the United States, the vast majority of research on ASD interventions has

focused on behavioral approaches. Of the 19,000 articles reviewed by a 2001 National

Academy of Sciences committee's in-depth study on educating children with autism,

approximately 500 addressed ABA, many of which established the model's effectiveness

(Lord, 2001). In an early, groundbreaking 1987 study, Lovaas claimed that 47% of

children who receive early intensive behavioral interventions (EIBI) can be expected to

overcome autism. A follow-up study suggested that improvements were sustainable over

time (McEachin, Smith, & Lovaas, 1993).

However, recent studies have challenged the longstanding claims that ABA is as

effective as its proponents claim it is (Howlin, 2003; Shea, 2004; Spreckley & Boyd,

2009). Many of these studies critique the accuracy and rigor of the existing literature that

defends ABA's authority (Shea, 2004; Sheinkopf & Siegel, 1998). In a review of ABA

studies, Shea (2004) refuted Lovaas' claim that EIBI can lead to typical functioning in

47% of childhood autism cases, citing design flaws and problems with replicability.

Some studies show that whereas Lovaas-style treatments are capable of producing

positive outcomes, improvements in important areas like IQ and symptom severity are

actually nominal (Rogers, 1998; Sheinkopf & Siegel, 1998). Other researchers complain

that the guidelines outlined by Lovaas-style approaches are largely unrealistic,

particularly because the treatment standards are difficult to maintain in home-based

settings (Johnson & Hastings, 2002; Mudford, Martin, Eikeseth, & Bibby, 2001). They

reference common problems, such as inadequate program supervision and multiple

 24

impediments to maintaining 40 hours of intervention per week (Mudford, et al., 2001).

Others cite difficulties generalizing improvements to multiple settings, namely natural

environments that involve peer interactions and spontaneous social situations.

Futhermore, Lovaas' 1987 study results were based on early methods, which emphasized

punishments (i.e., hitting) designed to extinguish undesirable behaviors; and because

ABA has developed to favor positive reinforcement over aversive conditioning, critics

voice further doubts about the generalizability of Lovaas' findings.

ABA's practices are often criticized for their emphases on compliance, rote

learning, and what many believe to be an overreliance on repetition, rewards, and

feedback to teach children prescribed skills (Interdisciplinary Council on Developmental

and Learning Disorders [ICDL], 2003; Shea, 2004). Some critics believe ABA is

therapist-driven, not child-driven, and too often ignores the child's natural learning

interests. A similar argument is that by eliminating behaviors and replacing them with

isolated skills, the unique qualities of the child go unsupported while children meanwhile

learn to rely on concrete reinforcers instead of people (Greenspan & Wieder, 1998, 2006;

Rogers, 1998). Others contend that ABA continues to promote aversive techniques,

despite the model's elimination of formal punishment practices. Some argue that

Lovaas' 1987 study established "unrealistic and unfair" (Grindle, et al., 2009, p. 53)

expectations for ABA outcomes, such as the expectation that many children will achieve

normal functioning, leading to parental disappointment when child progress is limited.

Another common criticism of ABA is that it does not adequately target social deficits and

insufficiently acknowledges the importance of relationship in its theories and practices

(Greenspan & Wieder, 2006; Kohler, 1999; Rogers, 1996).

 25

Developmental models. Developmental methods like Floortime tend to have a

strong child focus and stress the importance of affect and relationship as key vehicles for

change (Greenspan & Wieder, 2006; Lord, 2001; Rogers, et al., 2006; R. Solomon, et al.,

2007). This type of approach is sometimes referred to as social-pragmatic (e.g., Solomon

at al., 2007), and it is exemplified by a number of other researched intervention methods

(Dawson, et al., 1990; Rogers, 2000; Siller & Sigman, 2002; R. Solomon, et al., 2007). In

a typical developmental approach, the child initiates learning opportunities, and the adult

seizes and draws out natural moments of interaction. The adult observes the child's overt

and subtle communications and responds with relational techniques, such as joining and

imitation. Treatment typically takes place in a naturalistic setting, which is often

painstakingly modified to suit the child's developmental needs (Lord, 2001).

A review of the limited research on developmental interventions uncovered few

critiques of developmental interventions. The most often cited criticisms reference the

scarcity of empirical data about the models' outcomes. The models' methods and results

are more difficult to quantify and operationalize than those of behavioral models that

teach and measure discrete skills (Lord, 2001; Rogers, 2000). Another common

complaint about developmental models is the numerous demands they place on parents,

such as time, labor, and energy requirements.

In recent years, interventions have begun to move toward each other, with

traditional behavioral approaches enlisting more naturalistic features (e.g., pivotal

response training, (Koegel, Bimbela, & Schreibman, et al., 1996) and developmental

models adopting more behavioral techniques (Koegel, Bimbela, & Schreibman, 1996;
Lord, 2001). Naturalistic methods have been shown to result in language improvements

that are generalizable to ordinary everyday situations (Lord, 2001).

Floortime. Floortime is a philosophy and treatment method that is a key element

of DIR, a model that stands for a "Developmental, Individual Differences, Relationship-

Based" (Greenspan & Wieder, 2005, p. 40) approach to addressing the emotional

development of children with autism and other developmental challenges. Created by

child psychiatrist Stanley Greenspan and clinical psychologist Serena Wieder, DIR is a

comprehensive assessment and treatment model aimed at helping clinicians, parents, and

educators tailor intervention programs to children's individual strengths and needs

(Greenspan & Wieder, 2006). It emphasizes the centrality of emotions and relationship

in all areas of development, while also incorporating knowledge about a child's unique

developmental level and characteristics, such as communication styles and sensory

processing profiles. It encourages the collaboration of an interdisciplinary team of

interventionists who honor and engage the child's natural interests, ultimately

challenging the child to master emotional, social, and intellectual milestones.

As a treatment method, Floortime is a way of relating to a child in meaningful,

dynamic ways that utilizes his or her motivation to achieve two main objectives: "follow

the child's lead" (p. 178) and "bring the child into a shared world" (p. 179). As such, by

engaging a child's natural interests, the Floortime interventionist joins the child in ways

that optimally promote interaction and learning. It is standard for a clinician to

recommend treatment programs that include eight or more 20- to 30-minute Floortime

sessions a day. Sessions typically take place on the floor with a parent or other

interventionist joining a child's play interests, but they can also take place in cars,
 27

grocery stores, and other natural environments. In sessions, an interventionist uses a host

of relational strategies to engage a child's attention and encourage his or her desires and

initiative.

Because parent involvement is at the heart of the model, the interventionist is

often a parent. The parent is often coached in a home or therapy setting by a

professional, and coaching styles vary widely. Sometimes, a therapist observes a parent

and child playing in person and offers feedback in the moment. Other times, therapists

observe video of parent-child interactions and provide feedback retrospectively, or other

arrangements are made.

Floortime emphasizes the importance of relationship and affect as modes of

effecting improvements in all areas of a child's functioning. The therapy targets the

entire child and assumes that symptoms diminish when developmental foundations are

established. Greenspan and Wieder (1998) created a schema called functional emotional

developmental levels (FEDLs, which are also referred to as functional emotional

developmental capacities) to capture a sequence of six fundamental developmental

milestones and a set of key Floortime strategies to help parents and clinicians work

toward each FEDL with children (Wieder & Greenspan, 2003): self-regulation and shared

attention (interest in the world); engagement and relating; two-way intentional

communication; purposeful complex problem solving communication; creating and

elaborating symbols (ideas); and building bridges between symbols (ideas) (See

Appendix C for a detailed description of the FEDLs.). Greenspan and Wieder (2006)

recently added three developmental capacities to the list of FEDLs. They are: multi-
 28

causal and triangular thinking; gray area, emotionally differentiated thinking; and a

growing sense of self and reflection on an internal standard.

FEDLs are central in DIR/Floortime assessment and treatment. Each FEDL

demands high levels of emotional and intellectual engagement on the part of the

interventionist, who is responsible for helping the child master the stages one by one and

resume a healthy developmental trajectory. Each stage places different demands on

caregivers. For example, in stage one, which focuses on developing regulation and

interest in the world, caregivers help children transfer their emotions from internal

preoccupations to the external world. Whereas most babies begin this transition fairly

effortlessly during the first few months of life, children with ASDs often need extra help

in areas like sensory regulation and developing interests outside of themselves beyond

infancy. Caregivers who use Floortime are instructed to find ways to engage the child's

desire to attend to the outside world. They start by understanding as best they can how a

child's unique sensory and motor systems function in order to help the child feel

comfortable in the world, and then they do what they can to control the environment in

order to optimize the child's regulatory capacities. In stage one, a caregiver might play a

simple game of peek-a-boo with a child, using highly animated facial expressions to

engage an exchange, or using soothing sounds to help regulate and engage an easily

overstimulated child. While the caregiver tasks in stage one can seem simple, they

actually demand high levels of attention and patience, along with the ability to modulate

one's own emotions and expressions.

As children advance through the milestones, a caregiver must adapt by assuming

new ways of engaging a child and learning activities that are appropriate for the new
 29

stages. During stages five and six, which focus on developing symbolic, emotional, and

logical thinking, a caregiver must learn how to challenge a child to develop pretend play.

To help a child learn how to develop ideas, caregivers learn how to use their own

affectively charged words and actions to encourage the child to communicate needs,

desires, and interests in increasingly complex ways. The following example of a game

called "Let's pretend" illustrates the types of activities a caregiver might encourage

during stage five:

Let's pretend. Initially encourage the child's imagination by helping her

stage familiar interactions during pretend play. Then entice her into
introducing new plot twists; jump into the drama she has started by
becoming a dog, cat, superhero, or some other character, ham it up, and
see how long you can keep it going. Challenge her dolls or teddy bears to
feed, hug, or kiss each other, to cook or go off to the park and play. From
time to time, switch from becoming a character in one of the child's
dramas to taking on the role of a narrator or sideline commentator. Your
comments will thicken the plot. Periodically summarize the action and
encourage the child to move the child along, (p. 62)

While the "Let's pretend" example may seem like a standard game played with typically

developing children all the time, a Floortime caregiver who uses it is challenged to be

especially purposeful, attentive, and expressive. Because children with ASDs tend to

struggle with pretend play and often become repetitive in their play behaviors, a caregiver

is challenged to be patient, alert, and flexible, all while engaging his or her own

imaginative capacities.

Floortime outcome research. Research shows that Floortime is an effective

treatment that results in favorable child outcomes and high parent satisfaction. In a chart

review of 200 cases of children with ASDs, Greenspan and Wieder (1997) evidenced the

potential for a development-based approach that emphasizes individual differences and

affective interaction to reduce symptoms and improve a child's abilities to relate and
 30

communicate. The development of the DIR/Floortime model was greatly influenced by

the 1997 study's confirmation that problems with intimacy and relating are secondary to

primary processing problems. The study examined cases of children who consulted with

or were treated by the researchers over a period of eight years while concurrently

involved in intensive home-based programs (20-30 minute sessions, 8-10 times a day).

Results suggested that some children were capable of remarkable improvements in socio-

emotional areas previously thought to be resistant to treatment. Greenspan and Wieder

observed that a "good to outstanding" (pp. 107-113) subgroup of the 200 children

progressed in ways that far surpassed prognostic expectations for children with ASDs.

Their notes provide a particularly impressive summary of this group's progress:

After two or more years of intervention, these children became warm and
interactive, relating joyfully with appropriate, reciprocal preverbal
gestures; could engage in lengthy, well-organized and purposeful social
problem-solving and share attention on various social, cognitive, and
motor-based tasks; use symbols and words creatively and logically, based
on their intent and desires, rather than using rote sentences; and progressed
to high levels of thinking, including making inferences and experiencing
empathy. Some children in this group developed precocious academic
abilities two or three grade levels above their ages. They all mastered
basic capacities such as reality testing, impulse control, organization of
thoughts and emotions, differentiated sense of self, and ability to
experience a range of emotions, thoughts, and concerns. Finally, they no
longer showed symptoms such as self-absorption, avoidance, self-
stimulation, or perseveration. On the Childhood Autism Rating Scale
(CARS), they shifted into the nonautistic range, although some still
evidenced auditory or visual-spatial difficulties (which were improving)
and most had some degree of fine or gross motor planning challenges.
(Greenspan & Wieder, 2006, pp. 379-81)

The researchers further challenged preexisting prognostic limitations by showing that all

200 children were desirous of intimate, emotional contact, and even the most withdrawn

children were responsive to their caregivers' DIR-informed attempts to engage them.

Greenspan and Wieder (2005) further underscored the effectiveness and importance
 31

of family-oriented interventions in a study that followed up on the status of 16 male

children with ASDs and their families who implemented a Floortime program ten to

fifteen years earlier. On average, these families spent 9 hours a week doing Floortime for

approximately 5 years. The children ranged from 4 to 8 years old at the start of their

programs and between 12 and 18 years old at the time of the study. The researchers

discovered that the children in the study made long lasting progress, mastered their core

symptoms and developmental deficits, and overcame motor planning and sensory

processing challenges. Furthermore, the children developed into teenagers who were

more empathic than their typically developing peers. Results demonstrated specific ways

in which the model can help children develop academic and social skills while becoming

observant, self-reflective, and creative individuals who enjoy rich social lives. The

researchers recalled their reactions to hearing parents' perspectives on their children:

We were struck by how the parents first described the emotional qualities
they valued in their children rather than their academic achievements and
the lingering awe they felt that the children they were told were autistic
had become such wonderful, well grounded kids... [who] had become part
of life in all its dimensions, (p. 46)

When asked how their children were doing at the time of the study, one parent stated,

'"I'm not parenting a child with special needs, just an adolescent boy" (p. 46). The

researchers reflected:

What was most important to all these families was how happy, related, and
fully involved in life their children were. The parents weren't thinking
about what profession their children would have or what they would do in
life; they were most interested in the fact that their children would have
relationships, families, and friends, and be able to cope with whatever
might come. (p. 58)
 32

Parents reported feeling hopeful about their children's futures, particularly given

the ways their children surpassed the limitations they were told to expect when

their children were first diagnosed.

Solomon et al. (2007) performed the first and only known rigorous program

evaluation using Floortime principles. In this pilot study, a DIR/Floortime-based

intervention delivered through a parent training model called the PLAY Project Home

Consultation (PPHC) program was shown to be a useful and cost-effective intervention

for young children with autism. The PPHC parent training lasted 8 to 12 months, during

which time 68 parents were asked to conduct a total of 15 hours of DIR-based play

sessions with their child per week. Results indicated marked improvements in children's

cognitive, social, and language functioning. An examination of videos demonstrated that

the majority of parents were able to support reciprocal exchanges with their children,

with 85% of parents deemed to be "appropriately interactive" (p. 218). Furthermore,

none of the 50 parent participants who completed satisfaction reports were dissatisfied

with the program. In fact, 70% reported being very satisfied, 10% were satisfied, and

20% were somewhat satisfied.

Another body of research also demonstrates the efficacy of other developmental

models with relationship-focused practices similar to those of Floortime (Mahoney &

Perales, 2005; Vismara & Rogers, 2008). Mahoney and Perales (2005) studied the

usefulness of developmentally-informed relationship-based models in the treatment of

PDDs and developmental disorders (DD). Mothers were instructed on how to administer

a relationship-focused intervention called "responsive teaching" to their toddler- and

preschool-aged children. Children demonstrated significant improvements in multiple

 33

developmental areas, such as communicative, cognitive, and socioemotional functioning.

Relative to children with DDs, children with PDDs showed greater improvements, many

of which corresponded with greater levels of maternal responsiveness.

Parents of children with autism spectrum disorders. The increasing emphasis

on parent participation in early interventions ushers in novel parenting demands.

Because it is recommended that early intervention commence soon after diagnosis, the

initiation of services typically coincides with what is an already emotionally turbulent

time for parents. To better understand the support needs of these parents, it is important

to recognize patterns in their emotional processes. Parents of children with ASDs are

often perplexed and exhausted by their children's behaviors and symptoms. A child's

social deficits pose particular parenting challenges, as children with ASDs are less likely

than other children to reward parents with the smiles and mutually satisfying exchanges

that so often help parents weather difficult parenting moments (Dawson, et al., 1990). A

child who retreats physically or emotionally can cause a parent to feel rejected and

ineffective (Dawson, et al., 1990; Greenspan & Wieder, 2006). Meanwhile, a parent's

mental health is critical to the success of interventions, as demonstrated by a number of

recent studies that show that the development of children with ASDs is best facilitated by

parents with greater emotional availability. Floortime demands parents to be playful, use

high affect, self-reflect, and remain emotionally available. Parents who utilize Floortime

report high satisfaction with the program and benefit from improved family functioning

and resilience as a result of using the intervention; however, little else is known about

how Floortime experiences and demands impact parents and families. It stands to reason

that interventions geared toward supporting the well-being of parents of children with
 34

ASDs will go a long way to foster the emotional availability necessary to successfully

treat a child using such emotionally demanding treatments.

Parenting stress and well-being. Parenting a child with an ASD has significant

implications for parental well-being and the health of the greater family system. A large

body of literature examines the high levels of stress associated with parenting a child with

an ASD (P. Benson, 2006; Hastings, et al., 2005; Koegel, Schreibman, Loos, Dirlich-

Wilheim, & Dunlap, 1992; Wolf, Noh, Fishman, & Speechley, 1989). In fact, it is well

established that parents of children with ASDs experience more stress than parents of

children with other disabilities. Compared to parents of typically developing children

and parents of children with Down Syndrome, parents of children with autism report

more family stress and adjustment problems (Sanders & Morgan, 1997), as well as more

parenting stress and related dysphoria (Dumas, et al., 1991). The psychological well-

being of mothers is particularly vulnerable, as mothers report more parenting stress than

fathers (Abbeduto, et al., 2004). Stress levels are particularly high around the time of

diagnosis and during the early stages of intervention, particularly for mothers (Davis &

Carter, 2008; Dumas, et al., 1991; Sharpley, Bitsika, & Efremidis, 1997).

Parenting struggles can be exacerbated by secondary effects on family dynamics.

For instance, couples who co-parent a child with an ASD experience lower relationship

satisfaction than couples who co-parent a child without a developmental disorder (Brobst,

Clopton, & Hendrick, 2009). Relationships between a child with autism and his or her

siblings are compromised by marital stress and sibling dissatisfaction with differential

parenting (Rivers & Stoneman, 2008).

 35

Evidence shows that stress levels and other negative emotions are highest around

the time of diagnosis or when a child is very young. The experience of obtaining an ASD

diagnosis for a child can be shocking and can set off a grieving process. Meanwhile,

parents must quickly learn about their child's disorder, enlist therapists, and determine

how their family will manage unexpected treatment expenses. Dumas et al. (1991) found

that mothers of young children with autism (younger than 7 years, 5 months) are

especially vulnerable to dysphoria.

A number of studies cite common sources of parenting stress that have been

shown to compromise the well-being of parents of children with ASDs, including:

caregiving-related time pressures (Sawyer, et al., 2010); challenging behaviors associated

with ASDs (e.g., regulatory problems and externalizing behaviors) (Davis & Carter,

2008); and financial burdens. Disappointment related to a child's failure to develop age-

appropriate social skills has also been shown to contribute to parental stress (Davis &

Carter, 2008). For instance, toddlers and preschool-aged children's problems with social

relatedness, such as minimal responsiveness, correspond with elevated levels of parenting

stress and increases in problematic parent-child relationship features (Davis & Carter,

2008; Kasari & Sigman, 1997). Conversely, lower parental stress levels correspond with

more responsive and interactive children (Kasari & Sigman, 1997).

Self-efficacy and competence. Negative emotional reactions have been shown to

impact a parent's overall sense of self. For instance, stress negatively affects feelings of

self-efficacy for mothers who perform a therapeutic role in their children's behavioral

intervention programs (Hastings & Symes, 2002). This is important because parents of

children with autism who are confident about their therapeutic efficacy fare better than
 36

those with low self-efficacy. Self-efficacy also mediates the effects of a child's

challenging behaviors on mothers' levels of anxiety and depression, and it moderates the

effects of a child's challenging behaviors on fathers' levels of anxiety (Hastings &

Brown, 2002). Whereas maternal therapeutic self-efficacy is not related to program

factors like time investment or duration of treatment, it is predicted by program support

and symptom severity; however, stress mediates the influence of program support on

self-efficacy (Hastings & Symes, 2002).

Coping and adaptation. Parents adapt to the stresses of parenting a child with an

ASD by employing numerous coping strategies, some of which have been shown to be

more effective than others. Evidence shows that mothers of children with ASDs adapt to

the uncontrollable realities of parenting a child with an ASD through a process of coping

by redefinition, wherein they reexamine and readjust life priorities, such as the fulfillment

of needs like achievement and affiliation (Tunali & Power, 2002). Compared to other

mothers, mothers of children with ASDs place more of an emphasis on their parenting

role and spousal support, lower their emphasis on career, spend more of their leisure time

with family, and show a slightly higher tolerance for ambiguity. This redefinition process

has been shown to improve overall life satisfaction and buffer stress and other threats to

well-being. The type and quality of coping strategies employed by a parent influences

his or her well-being. Hastings et al. (2005) conclude that parents who employ positive

coping strategies struggle less than parents who favor other strategies, such as avoidance

coping, which evidence suggests have negative implications for parental mental health

and levels of parenting stress. Dunn (2001) found that parents with a confrontive style of

coping adjust better than parents with avoidant and escapist coping styles. Parents with
 37

strong social supports have also been shown to cope better than parents who have few or

no supports, with certain social supports (e.g., childcare support from family members)

buffering the influence of stressors on parental well-being better than others (Sharpley, et

al., 1997).

Parenting stress and treatment outcomes. Parents' stress reactions can adversely

impact the development of any child, but particularly a child with a cognitive disability

(Guralnick, 2000). High parenting stress levels can seriously interfere with the

developmental progress of a child with an ASD (Hastings & Johnson, 2001; K. R.

Williams & Wishart, 2003). Whereas ASD children who participate in more time-

intensive early intervention programs have been shown to improve more than children

who put in less treatment time, early intervention loses its effectiveness when parents

experience higher levels of parenting stress, which can actually negate the benefits of

greater time investment (Osborne, McHugh, Saunders, & Reed, 2008). Children with

ASDs who share more positive affective exchanges with their parents, such as parent-

child synchronization and attunement, have been shown to develop better long-term

language and joint attention capacities (Siller & Sigman, 2002). Although parents of

children with ASDs seem to be naturally as attuned and close to their children as mothers

of typically developing children, higher stress levels correspond with lower parental

sensitivity and less effective co-regulation activities (Gulsrud, et al., 2010; Hoffman, et

al, 2009; Siller & Sigman, 2002).

Other emotional reactions and treatment outcomes. A parent's reactions to a

child's ASD diagnosis can have implications on the child's development and the parent-

child relationship. A parent's unresolved feelings about a child's diagnosis can

 38

negatively impact a mother's parenting style and capacity to play with her child. The

more resolved a mother is about her child's diagnosis, the better her cognitive and

supportive engagement is during play interactions. For example, resolved mothers are

better able to scaffold their children's play and support reciprocity than relatively

unresolved mothers (Wachtel & Carter, 2008). Wachtel & Carter point out that child-

focused interventions do not typically address parents' difficult feelings about their child's

diagnosis, and she concludes that interventions that address parents' emotions and

thoughts related to the diagnosis may be useful.

Parent involvement and training in behavior and communication therapies. A

large body of literature demonstrates the potential for parent-implemented early

intervention to support parental well-being and successfully improve quality of life for

children with ASDs, their parents, and their families (Greenspan & Wieder, 1998, 2006;

Guralnick, 1998, 2000; Ozonoff & Cathcart, 1998; Rogers, 1996). Research indicates

that parent involvement increases the efficacy of interventions, results in especially

positive child outcomes, and ultimately contributes to greater successes than

interventions that do not include parents (Levy, Kim, & Olive, 2006). Today, some form

of parent participation is incorporated into most widely accepted models that are backed

by strong empirical evidence (Lord, 2001; Lord, et al., 2005).

Parents are able to learn to be effective teachers and therapists to their children

with ASDs (Levy, et al., 2006; Schopler & Reichler, 1971), and almost all methods offer

parent training in advocacy, teaching, and parenting skills (Lord, 2001). Increasingly,

programs augment parent training with emotional and logistical supports for parents. Of
 39

the parent training studies reviewed for this project, most focused on instructing parents

to teach home-based methods used ABA.

Parents. Parent training results in a number of benefits for parents: reduced stress

(Keen, Couzens, Muspratt, & Rodger, 2010; Keen, et al., 2007); increased knowledge

(Diggle & McConachie, 2002; Jocelyn, Casiro, Beattie, Bow, & Kneisz, 1998); and high

levels of treatment satisfaction (Holmes, Hemsley, Rickett, & Likierman, 1982; Jocelyn,

et al., 1998; T. Smith, Buch, & Gamby, 2000). Mothers have been shown to benefit from

reduced maternal depression (McConachie & Diggle, 2007); an improved sense of

control (Jocelyn, et al., 1998); a more positive communication style (Diggle &

McConachie, 2002); and gains in confidence and competence (Keen, et al., 2010; Keen,

et al., 2007; Sofronoff & Farbotko, 2002). Studies show that parents especially benefit

from programs that teach skills and directly address emotional struggles, particularly

difficulties with stress and confidence.

Children. Interventions that incorporate parent training have also been shown to

benefit children with ASDs in multiple domains, including: communication (Diggle &

McConachie, 2002; Drew, et al., 2002; Jocelyn, et al., 1998; T. Smith, Groen, & Wynn,

2000); cognition and visual-spatial functioning (T. Smith, Groen, et al., 2000); and fine

and gross motor functioning (Ozonoff & Cathcart, 1998). Children whose parents

receive specialized instruction demonstrate greater adaptability (M. Solomon, Ono,

Timmer, & Goodlin-Jones, 2008) and fewer problem behaviors (Sofronoff & Farbotko,

2002). Parent training also correlates with improvements in language acquisition, which

research points out may be better facilitated by home-based interventions than by center-

based interventions (which more often preclude parent involvement) (Jocelyn, et al.,
 1998). Children with ASDs especially benefit from responsive parenting techniques

aimed at encouraging parents to follow their child's lead and respond to their interests in

the present moment (Mahoney & Perales, 2005).

Parent-child dyadic relationship. Other impressive benefits of parent training

include improvements in the quality of dyadic relationships between a parent and a child

with an ASD (Diggle & McConachie, 2002; Koegel, et al., 1996; M. Solomon, et al.,

2008). After parent training, parents and their children with ASDs have taken part in

more shared positive affective exchanges (M. Solomon, et al., 2008) and happier, less

stressful interactions with their caregivers; and parents have shown more interest in

interaction and their parental performance improved (McConachie & Diggle, 2007).

Family life. Research has demonstrated that parents who act as cotherapists to

their children with disabilities are not only effective interventionists but also contribute to

improvements in their family's overall equilibrium (Schopler & Reichler, 1971). Studies

suggest that family life can benefit from parent training, with families interacting more,

communicating more positively, and enjoying greater happiness and less overall stress.

Koegel et al. (1996) found that families who injected their dinnertime routines with

naturalistic teaching paradigms not only benefited from more positive parent-child

interactions but also exhibited improved family interactions. Interactions were rated as

happier and less stressful, with parents showing more interest in the interaction and

families communicating more positively.

Parents' experiences of early intervention. While much is known about the

positive effects of parenting education, little is known about how parents feel about

training programs and interventions, in general. The existing studies about parents'
 41

experiences of early interventions focus on behavioral programs and practical issues.

Most focus on financial burdens and other logistical concerns that impact parent

involvement. Johnson & Hastings (2001) asked 141 parents who conducted intensive

home-based behavioral programs for their children with autism about factors that

facilitated and factors that impeded program implementation. Results showed that the

factor deemed most facilitative was a supportive therapy team, while common barriers

included time constraints, energy demands, and difficulties maintaining a treatment team.

Social support and child progress were also identified as facilitative factors; however,

approximately one third of parents reported dissatisfaction with their children's limited

progress. Many parents cited practical ways they thought their behavioral programs

disrupted their family life, such as "invasion of the home" (p. 126) by staff, inadequately

trained staff, and scarcity of physical resources, such as equipment and space.

Grindle et al. (2009) also looked primarily at practical factors. The researchers

conducted semi-structured interviews to uncover 53 parents' perceptions of the

advantages, disadvantages, and effects of implementing home-based early intensive

behavioral intervention programs for their young children with autism. Results were

generally favorable, though parents detailed various challenges confronted by their

families. For instance, parents reported difficulties related to managing a treatment team,

maintaining administrative responsibilities, and experiencing a loss of privacy related to

the frequent presence of service providers in their homes. The study also identified a

small set of emotional impacts categorized into three clusters: feelings related to

expectations, stress levels, and motivation levels. Of the parents studies, 66% of the

mothers and 72% of the fathers reported feelings of delight related to their children's met
expectations, whereas 34% of mothers and 29% of fathers expressed feelings of

disappointment and increased stress when their child made limited progress.

Approximately one third of parents reported feeling less stressed after 2 years of EIBI,

and approximately one quarter said their stress levels fluctuated depending on how they

felt about the program. All parents reported that their levels of enthusiasm were in

constant flux, but mothers and fathers differed in terms of their motivation levels. While

33%) of mothers stated that they were motivated throughout the duration of their program,

only 5% of fathers remained motivated.

Benson, Karlof, & Siperstein (2008) identified factors most likely to elicit parent

involvement in home- and school-based programs. They found that mothers of children

with more difficult bahaviors were less involved in their children's education than parents

of higher functioning children. The disparity was attributed to the former's relatively

more intense experiences of physical and emotional overwhelm and greater difficulty

engaging children with language problems. Lower socioeconomic status also

corresponded with less maternal involvement in education (P. Benson, Karlof, &

Siperstein, 2008; Wehman, 1998).

K. R. Williams and Wishart (2003) performed a longitudinal, questionnaire-based

study to shed light on the positive and negative effects of intensive home-based programs

on family life over time. They examined relationships between these effects and child

characteristics, as well as aspects of parent implementation. Parents in this study utilized

the Son-Rise Program, a relationship- and play-based intervention that was conducted by

parents in their homes for one year. Results showed that the intervention was related to

increased stress levels in some cases and decreased stress levels in others. Parents with
 43

financial struggles and parents whose children had cognitive deficits in addition to an

ASD reported less happiness than financially stable parents and parents of children with

only an ASD.

Floortime and parenting demands. Greenspan and Wieder (2006) do not think

of the challenges of ASDs and other special needs as belonging solely to the diagnosed

child, but also to each parent, as well as all other members of the child's immediate

family. They emphasize the important role primary relationships play in a child's

development and propose that parents and clinicians put the "family first" (p. 57).

Drawing on evidence suggesting that children with ASDs and other special needs fare

best when emotionally engaged during most of their waking hours, Greenspan and

Weider offer a global, naturalistic approach encapsulated in the motto: "Floortime All the

Time Everywhere" (p. 186).

Theories of learning. The Floortime model aspires to help parents discover and

know their child and his or her unique idiosyncrasies. Many other prevailing models aim

to extinguish symptoms and use behavioral modification tools in a standardized way, not

always emphasizing individual differences. It can be argued that the philosophical

underpinnings of Floortime characterize learning as a creative and emotional process. In

contrast, it can be argued that some of the more structured programs privilege measures

of intellect such as IQ scores, discrete skills, and isolated behaviors. Because different

early intervention models explicitly and implicitly represent different sets of values and

different theories of learning, it makes sense that parents' responses to programs differ

based on who they are. One of the research areas the current study is interested in is what

type of person is attracted to Floortime. Are there certain value systems that are best
 44

suited to the model? Furthermore, are there particular cultural backgrounds and

personality attributes that better lend themselves to learning and using the model with

relative ease? In instances in which personality characteristics clash with the model,

what are parents' emotional reactions, and how do these reactions impact parents'

experiences of the model?

Playfulness and high affect. Playfulness and elevated affective expression are

very specific demands of Floortime intervention. Parents are encouraged to be their

child's "play partner" (1998, p. 123), transforming ordinary moments into play

opportunities whenever possible. Because affect is believed to draw children out of

withdrawn or disregulated states, Floortime parents are often instructed to act more

animated than they might normally act. The following vignette will illustrate a typical

Floortime play interaction:

Nancy is frustrated with her son, Billy, who is easily absorbed with his toy
train, whirling it around and around a circular track for hours at a time
without variation or pause. Nancy's instinct is to snatch the train away
and coerce Billy into playing a less repetitive game with her. Instead, she
initiates interaction by joining Billy's natural interest in trains. She
initially moves her own train around and around the track. After many
rounds of joining, she gradually inches herself further into Billy's world
by moving her train closer and closer to his. Nancy makes exaggerated
train noises, and Billy smiles. Nancy takes the smile to be a meaningful
communication, even though Billy does not acknowledge her presence in
any other way. Nancy decides to go one step further and playfully
obstruct Billy's repetitive circling by crashing her train into Billy's train.
Billy, who is rarely verbal, hollers, "Don't!" Nancy pretends to weep
vigorously, crying: "But now I'm stuck! What should I do?" Billy does
not answer, but his mother's lively pleas and funny faces catch his
attention. He glances at his mother momentarily and giggles. His
attention quickly turns back to the trains, so Nancy begs: "What should I
do, Billy? Should I move forward or back?" He answers, "Forward!" and
uses Nancy's hand to move her train forward and out of the way.
 45

By capitalizing on Billy's natural interests and injecting dramatic affect into the play,

Nancy was able to draw her son out and share mutually enjoyable moments with him.

Each smile and simple command (e.g., "Don't!") was an exchange that completed a

"circle of communication" (Wieder & Greenspan, 2003, p. 428) between mother and son.

Billy had the opportunity to experiment with negotiation, communication, and other

social learning opportunities otherwise unavailable to him in moments of overstimulation

or preoccupation. Other areas the current study is interested in exploring are the effects

that these unique facets of Floortime have on parents; for example, how do they

experience the demands of being a constant "play partner" to their children? How do

parents respond to the model's demands for such high levels of patience, energy,

spontaneity, and various features of emotional availability? What are the emotional

consequences and benefits?

Self-reflection and emotional availability. Floortime coaches parents to closely

examine personal strengths, weaknesses, and other psychological characteristics that

impact their functioning as a parent and person (Greenspan & Wieder, 1998). Parents are

encouraged to face difficult feelings head on and to identify and alter maladaptive coping

patterns. They are asked to develop an awareness of their personal patterns, often

unconscious and deeply rooted in their own childhoods in order to minimize the extent to

which those patterns interfere with their child's development. Regular self-reflection is

believed to facilitate Floortime, as the process can improve parents' emotional

availability to their children, as well as their flexibility in areas such as parenting style

and playfulness. In fact, Floortime sets high standards for emotional availability. Parents

are taught that staying emotionally present and contained helps their children learn to
self-regulate. Greenspan and Wieder (2006) provide a set of lofty goals for parents,

including to: "become more soothing and regulating, more nurturing and warm, more

interactive and facilitating, more verbally supportive, more creative, and more

collaborative" (p. 166). Similarly, parents are cautioned against certain behaviors, styles,

and emotional reactions that could inhibit their child's development. For instance,

another list of goals advises against "avoiding emotional areas that make you

uncomfortable" and "withdrawing in the face of strong emotion" (pp. 104-5). Another

area the current study is concerned with is how parents who are encumbered by the

unique stresses of parenting a child with an ASD respond to such high standards for

emotional availability. How do emotional experiences influence the process of adopting

the model? What are the ultimate effects of Floortime implementation and what would

help parents more easily adapt to the model? .

Research on parents and Floortime. A few doctoral dissertations have

investigated parent involvement in their children's Floortime program, but all projects

reviewed for this study focused primarily on outcomes and also exhibited significant

methodological limitations. No studies carefully examined parents' emotional

experiences of the model.

Kalek (2008) demonstrated the effectiveness of a Floortime-based intervention

program directed at parents and their 0 to 3 year olds with developmental delays. She

interviewed 29 parents about their experiences, specifically looking at what the parents

deemed effective and ineffective about the intervention. Her data suggested that the

promotion of parent involvement in a family-centered approach could have the effect of

decreasing parents' stress levels. Furthermore, all parents deemed all intervention
 47

components helpful. Over 90% of the parents reported knowledge gains, felt helped and

empowered by clinicians, and felt that involvement in the program improved their

families and strengthened marital relationships. Kalek concluded that the relationship

between parents and clinicians is of utmost importance and demands careful attention.

Pilarz (2009) provided empirical evidence for the usefulness of Floortime and a

brief parent-training program aimed at supporting parent-child interaction and overall

developmental progress. The 7-week parent training focused on provision of information

to parents about their 3- to 12-year-old children's unique developmental profiles and

instruction about parent-child interactions aimed at moving the children up the Floortime

"developmental ladder" of functioning. A particular emphasis of the training involved

teaching parents how to support their child's regulatory needs. The study found that the

parent-training program led to significant improvements in children's developmental

levels, as well as the quality of the parent-child dyadic relationships. Compared to

children whose parents did not receive training, these children showed better

developmental progress in areas of relating, self-regulation, interest, and attention.

Children whose parents received training were better able to engage, form relationships,

demonstrate developmentally appropriate skills, and self-regulate during interactions with

parents.

Trinh (2008) conducted a phenomenological study of Asian and Asian-American

parents' reactions to their child's autism diagnosis and their experiences with Floortime.

She posed open-ended questions to three parents who received Floortime training,

specifically probing for themes related to how cultural characteristics, such as Asian

Americans' values, parenting styles, and perceptions of mental illness, affected stress
 48

levels and impacted treatments and treatment adherence. She aimed to offer greater

understanding about the interplay of culture with the play-oriented and relatively

unstructured features of Floortime. Two of the parents studied approved of Floortime,

while the other parent had a generally negative reaction to the model. The two parents

with positive experiences reported changes in their life views and priorities, and they

described a process of coming to value relational skills over academic skills. These

parents appreciated Floortime's strength-based approach to meeting a child at his or her

specific developmental level. The third parent did not endorse any changes resulting

from experiences with the model. He stated a preference for disciplined child behaviors

like following directions and sitting quietly, which Trinh interpreted to be a reflection of

a value system that prizes academic- over relationship-focused values. Trinh augmented

her limited findings with established results derived from the existing body of literature

to offer probable conclusions. For instance, she postulated that Asian and Asian-

American parents might come to terms with their child's autism diagnosis at a slower rate

than some other parents due to culturally-informed stigmas attached to mental health

conditions. She proposed the possibility that her research participants' acculturation and

education statuses influenced their values, and she cited literature that suggests that less

acculturated and less educated Asian-Americans especially value directive and structured

interventions. She highlighted the fact that the parent who rejected Floortime was

relatively less acculturated and less formally educated than the other parents to provide a

possible explanation for his preference of ABA over Floortime. Trinh's findings were

based on a small sample size, thereby rendering the results unreliable predictors of a

larger group of parents' experiences. Results hinted at possible roles that values may play
in a parent's level of compatibility with a model, but they shed little light on the nuances

of a parent's emotional experiences. Trinh's research initiated an inquiry into the

interplay of Floortime and culture; however, little remains known about how cultural

differences affect parents' experiences of the model.

Mastrangelo (2009) examined the outcomes of 36 families 10 months after

participating in a Floortime program or combination of community interventions (such as

behavioral treatments). She performed a multi-method study to quantitatively and

qualitatively measure family outcome, which she defined as "the perceived status (level

of functioning) of family members who participated in early intervention services with

their child" (p. 17). Relative to the group of families involved in a combination of other

interventions, families involved with Floortime reported more positive outcomes,

including significant improvements in family resiliency. In fact, all Floortime families

showed indicators of family resilience post-intervention. She concluded with arguments

for why family members should be interventionists:

The argument for families to be the main providers of intervention goes

beyond trying to achieve 'best' child outcomes but instead is about
developing a strong, emotional, social and communicative bond between a
child and his/her family....Intervention models such as DIR/Floortime
inherently provide families with ample opportunities to experience the
excitement of emotional and affective exchanges—something often
overlooked in behavioural interventions, (p. 167)

Mastrangelo suggested that future research include a "qualitative analysis of the success

stories to discern grounded theory related to what is working for families and service

providers" (p. 162). The study took a special education focus and examined family

outcomes using a specific resiliency lens. The clinical utility of results is therefore

limited.
 In a primarily empirical study, Pilarz (2009) offered brief qualitative findings

derived from a questionnaire administered to parent participants about the helpfulness of

a Floortime-related training, their thoughts about how parent-child interactions changed,

and whether they considered play with their children more fun. Overall, parents

responded with appreciation for instruction about their child's individual development,

particularly in the area of sensory needs. Parents felt helped by learning the importance

of lead-following, attending to gestures, and how to support co-regulation in order to

facilitate communication and engagement. Of the 13 parents questioned, 11 considered

play with their children to be more fun after the training was completed. Ten indicated

that their children were better able to stay regulated during play activities. One parent

reported: "I am falling in love with my child all over again" (p. 36). Another theme

involved the helpfulness of having a trainer who was receptive to accounts of parents'

difficulties.

In all, the existing literature provides important conclusions about the utility of

Floortime and parents' general satisfaction with the model, but it makes few meaningful

statements about what the experience of using the model is like for parents on a personal

level.

Summary of literature review. The research on the characteristics and potential

causes of ASDs is vast and largely incomplete. Research is underway to explain the

disorders, and attempts are being made to describe the numerous social impairments

common in individuals who have them. A large body of literature depicts various ways

in which these impairments interfere with critical stages in early childhood development,

as well as the multiple related long-term consequences, such as the failure to develop
 51

satisfying relationships. Meanwhile, the rate of autism diagnoses continues to climb

rapidly, affecting countless families.

Most researchers agree on the importance of early intervention for children with

ASDs, resulting in efforts to have children tested and treated as early as possible; and

myriad treatment options promise to address ASD symptoms. One common treatment

category consists of behavior and communication therapies, such as behavioral models

like ABA and developmental models like Floortime. These interventions are often

conducted in the family home by parents who work with their children many hours a

week. Whereas ASD treatment was once the domain of professionals, parent

participation in interventions has grown substantially during the last 50 to 60 years,

greatly altering the treatment landscape and introducing novel challenges into the lives of

parents.

Various developments in early childhood studies, such as the discovery of the key

role of play and relationship in the development of all infants and children, have

pervaded mainstream thinking and contributed to an emphasis on child-directed,

relationship-focused intervention practices. Some studies demonstrate the importance of

sensitive parental responsiveness in effecting change, thereby contributing to a growing

body of research that demonstrates the importance of primary caregivers in the

development of children with ASDs. However, the existing literature on interventions

focuses primarily on the child with an ASD (e.g., child outcome studies) and seldom

addresses the family system in which the child lives and develops. One widely used

model that highlights the family system is a developmental intervention called Floortime,

which has been shown to result in favorable child outcomes.

 52

As parents are increasingly encouraged to participate in a child's early

intervention program, they are met with greater demands. The movement to start

interventions early means that parents must often locate and begin programs while they

simultaneously struggle with a set of intense emotional reactions to their child's

diagnosis. Even after the early adjustment to a child's diagnosis, parents struggle with

certain realities of parenting a child with an ASD, such as the relational challenges posed

by a child's problems with social reciprocity. This study asserts that it is imperative to be

aware of parents' complex emotional processes in order to better understand their

experiences and predict their support needs.

Studies show that a parent's well-being greatly impacts the effectiveness of his or

her interventions. Floortime is an emotionally demanding practice and theory that asks

parents to be playful, highly expressive, and self-reflective. Studies show that Floortime

use can result in positive parent satisfaction reports and improvements in family life and

family resilience. However, no studies focus on how Floortime experiences impact

parents on an emotional level.

A thorough review of literature relevant to this study uncovered major

deficiencies in the research about the needs of and supports for parents who implement

interventions. In the relatively small collection of studies about parents and

interventions, there is a glaring lack of information about how struggling caregivers can

be supported to develop tools to effectively address their children's symptoms and foster

strong emotional and social connections with them. In one of the past decade's most

expansive studies on the status of education for children with autism, a committee
 53

assigned by the National Academy of Sciences (NAS) found similar gaps and flaws in the

research (Lord, 2001). The report concluded:

There has been a dearth of studies of the role of parents in intensive home-
based programs. Today, though it is not uncommon for parents to have
the central function in a home-based program, little is known about the
most effective ways to help them master the skills they need for this role,
(p. 36)

The committee recommended a call to action, stressing the need for more information

about the potential ways that family-centered interventions and family-centered training

can help parents. It even offered clear instructions:

Parents' concerns and perspectives should actively help to shape

educational planning.. ..The parents of children with ASDs cannot be
neglected. With the growing appreciation for parents' expertise about
their own children, and with the mounting evidence supporting their key
role in interventions, it is clear that parents' experiences must be better
understood in order for treatments to be successful, (p. 215)

This study delves into the experiences and support needs of a specific group of parents—

Floortime parents—by using a phenomenological methodology chosen for its ability to

capture nuanced themes about human experience. The specific methods employed are

described in detail in the next chapter.

 54

Chapter 3
Methods

The primary goal of this project was to provide a rich understanding of parents'

experiences facilitating an intensive Floortime early intervention program for a young

child with an ASD. Toward that purpose, semi-structured interviews were conducted and

analyzed using a qualitative research method called interpretative phenomenological

analysis (J. A. Smith, 2003; J. A. Smith, Flowers, & Larkin, 2009). Individual interview

questions asked parents to reflect on aspects of several broad research subtopics,

including: (a) the types of parents who are drawn to Floortime and why it appeals to

them; (b) the process of learning and using the model; (c) the effects of using the model;

(d) the types of parents who are ultimately best suited to it; and (e) the support needs of

parents who use it.

Qualitative methodology. Qualitative studies are useful for generating

hypotheses, developing parameters for quantitative studies, and identifying areas for

further research, especially when minimal research exists on a topic. Qualitative research

methods are also appropriate for assessing data that cannot be quantified and for

providing in-depth answers to exploratory questions. In general, qualitative research

aims to "understand and represent the experiences and actions of people as they

encounter, engage, and live through situations" (Elliott, Fischer, & Rennie, 1999).

As evidenced in the literature review, no existing studies to date focus on parents'

personal experiences of and thoughts about Floortime. The few studies that address

parents' experiences more broadly tend to utilize strictly quantitative measures. As a

result, the current body of research insufficiently depicts the nuances of parents' lived
 55

experiences with interventions like Floortime. Therefore, an in-depth qualitative

investigation was warranted.

IPA methodology. IPA was designed by social psychologist Jonathan Smith and

introduced into the health psychology field in 1996 (J. A. Smith, et al., 2009). The

creation of IPA was an attempt to join conventional qualitative research practices with

what Smith deemed to be the experimental and experiential roots of psychology. The

method has been embraced by researchers around the world and is particularly common

in clinical and counseling psychology.

The primary aim of an IPA study is to provide detailed, flexible understandings of

the experiences of a particular group of people. The method was selected for this study

based on its ability to distill meaningful themes from individuals' narratives of their own

personal experiences and for its usefulness in research concerned with applied

psychology (J. A. Smith, 2003). IPA is widely used in the human, social, and health

sciences because it provides frameworks for interview design and data analysis

specifically aimed at uncovering aspects of individuals' unique internal worlds, as well as

their individual ways of making meaning out of major life experiences (J. A. Smith, et al.,

2009). As such, while with this idiographic approach statements can be made about

individuals, the IPA approach does not make generalizable and objective statements

about the group of individuals studied. IPA values the unpredictable, emergent material

that can surface during an intimate conversation between two people. Therefore, the

model advocates against the development of formal hypotheses (J. A. Smith, 2003).

Although IPA is relatively new, its theoretical underpinnings have much longer histories
 56

in philosophy and other academic traditions (J. A. Smith, et al., 2009). The method was

created by fusing together three long-established theoretical perspectives:

1. Phenomenology. Phenomenology is a philosophical approach to the study

of subjective, lived experience. Instead of seeking out data to fit into

preexisting categories, phenomenology contends that experience "should be

examined in the way that it occurs, and in its own terms" (J.A. Smith, et al., p.

12). However, a strictly phenomenological approach has limitations. The

founder of phenomenology, philosopher Edmund Husserl, developed the

approach with philosophers in mind; thus it is not ideal for psychology

research. Additionally, Husserl provided few methodological procedures and

was more "concerned to find the essence of experience" (p. 16) than to

understand the experience of a particular person or experience. Beginning

with philosopher Martin Heidegger and more recently with Smith, influential

thinkers have attempted to focus phenomenology more on individual

experience by blending it with hermeneutics and other theories and

methodologies.

2. Hermeneutics. Hermeneutics is the study of interpretation. In the social

sciences, hermeneutic research seeks to uncover how individuals interpret

their lived experiences. IPA employs a "double hermeneutic" (p. 35) stance,

wherein the researcher attempts to make sense of participants making sense of

some aspect of their lives. IPA also assumes another layer to the

"hermeneutic dialogue" (p. 109) in which the reader is a third interpreter

 57

whose role is to understand how both the researcher and the participant derive

meaning from experiential information.

3. Ideography. IPA can be considered ideographic because of its emphasis on

the particular. An IPA study uses small samples so that the researcher can

describe case similarities and differences in detail and make meaningful

statements about each participant.

Sample. In accordance with IPA recommendations, the researcher used the

accounts of a small, reasonably homogenous sample of eight participants. According to

Smith, by sampling a small group of similar individuals, a researcher "reports in detail

about that particular culture but does not claim to be able to say something about all

cultures" (J. A. Smith, 2003).

Selection criteria. To ensure that participants were similar enough to make

meaningful statements about as a culture, participants were screened for participation on

the basis of a number of criteria. To be eligible, they must have been parents of children

with an ASD who were diagnosed and commenced Floortime treatment before the child

turned 5 years old (see Chapter 2 for a detailed definition of "early" intervention).

Parents must have received Floortime-informed parent training or guidance from at least

one expert on Floortime, such as a psychotherapist, educator, occupational therapist, or

speech therapist. It was also required that they had been directly involved in the child's

intensive Floortime intervention for at least one year.

Notes related to sample selection. Originally, the researcher attempted to recruit

based on a definition of intensive intervention as characterized by the NAS as a program

composed of a minimum of 25 hours per week of structured, goal-directed activities

 58

delivered in brief intervals nearly every day (Lord, 2001). However, a number of

stumbling blocks were encountered during the recruitment process that limited the

researcher's ability to control for certain variables, such as the frequency of Floortime

use. Of the 29 parents who expressed interest in participation, only two used the model at

least 25 hours per week for at least one year. Therefore, the list of interested parents was

arranged in order of weekly averages, and parents who used the model most frequently

were selected for interviews. Due to the limited pool of potential participants, no

preference was given to mothers or fathers.

In order to further protect the homogeneity of the sample, reasonable attempts

were made to select parents of children with similar levels of functioning. Based on the

researcher's anecdotal experience and her extensive review of the pertinent literature, she

presumed that parents of children on opposite poles of the autism spectrum tend to have

significantly different experiences. A more homogenous sample was expected to

facilitate attempts to make more useful comparisons and conclusions about the data.

Ultimately, preference was given to frequency of Floortime use over diagnosis

and level of functioning. Therefore, there was some variability in the functioning of

participants' children; all parents selected for participation had children with autism

disorder or PDD-NOS with levels of functioning in the medium to high range.

Limitations will be discussed in the Discussion chapter.

A total of nine parents were interviewed for this study; however, only eight of the

nine interviews were used as data. An initial set of eight individuals were recruited and

interviewed. However, there were technical difficulties with one of the original eight

interview recordings, which made it impossible to transcribe the interview with accuracy.
 59

The researcher contacted the participant whose recording was unintelligible to determine

whether she would like to be interviewed a second time, but the participant did not

respond. The researcher then contacted and interviewed the next parent on the list.

Participant characteristics. The basic demographic information of the eight final

participants is presented in Table 1. Initials have been used to identify individual

participants and protect their identities. The final sample consisted of seven mothers and

one father from six states across the country. All parents were married to their child's

other parent. They ranged in age from 35 to 49 when interviewed. At the time of their

children's births, parents ranged in age from 20 to 43. All parents received at least some

college education. One partially completed a bachelor's degree, one completed a

bachelor's degree, four had master's degrees, and two had doctorates. While using

Floortime, half had part-time or full-time work outside the home, while the other half

stayed home. Six of the eight participants' spouses worked outside the home.

Participants' past and present occupational backgrounds varied and included careers in

technology, sales, law, education, the corporate world, and the helping professions.

There was also great variation in spouses' jobs, which included work in technology, law,

business, and engineering. Two of the eight participants' spouses were full-time stay at

home parents, both of whom were from the East Coast.

In an effort to protect participants' identities, ethnicities and religious affiliations

were not included in Table 1. Six parents described themselves as Caucasian, and two

described themselves as East Indian. All parents identified themselves with a religion.

One identified as Catholic, two as Christian, two as Hindu, one as Jewish, one as

Methodist, and one as Buddhist.

 60

Table 1

Participant Demographics
Participant D B R J M

Relationship Mother Mother Mother Mother Father Mother Mother Mother

to Child

Relationship Married Married Married Married Married Married Married Married

Status

Current Age 36 35 46 49 39 38 36 36

Age at 33 20 42 43 32 30 26 30
Child's
Birth

Highest Master's Doctorate Some Master's Doctorate Master's Bachelor's Maste

Level of college
Education

Employed Yes No Yes No Yes No No Yes

Outside
Home
While
Doing FT?

Spouse Yes Yes Yes Yes No Yes Yes No

Employed
Outside
Home?

Number of One Two Two One One Two Five One

Children

All participants' children were diagnosed with ASDs before turning 4 years old.

Table 2 presents basic characteristics of each child. Seven children were male, and one

was female. At the time of their parents' interviews, children's ages ranged from 3 years,

4 months to 14 years, 10 months old. The children's ages at the time of initial diagnoses

ranged from 1 year, 6 months to 3 years old. At the time of interviews, the youngest

child was in preschool, and the oldest was in the 9th grade. One child was home-schooled

and her parent therefore did not specify a grade level. Seven children had autism disorder

diagnoses, and one had a PDD-NOS diagnosis. Five parents rated their child's current
 61

level of functioning as high and three as medium. In at least two cases, parents clarified

that their children functioned at a lower level than their current levels before using

Floortime.

Table 2

Child Characteristics
Child's
Parent S D B R J A C M

Sex Male Male Male Male Male Female Male Male

Current Age 3.4 14.10 4.6 5.11 7.7 7.5 9.9 6.4
(yrs)

Age at 2.0 2 3 2.8 1.6 211 3 2.3

Diagnosis (approx.) (approx.)
(yrs)

Grade Pre- 9* Pre-K Kinder- 2nd n/a 3rd Kinder-

school garten garten

Current Autism Autism Autism Autism PDD- Autism Autism Autism

Diagnosis Dis. Dis. Dis. Dis. NOS Dis. Dis. Dis.

Current High High High High High Medium Medium Medium

Level of
Functioning

Actual intervention programs varied greatly across the sample. Characteristics of

participants' Floortime use are presented in Table 3. When children first began using the

model, they ranged in age from 1 year, 11 months to 4 years old. The shortest period of

time that Floortime was used intensively was 1 year, and the longest was approximately 5

years. Weekly usage averaged from 6.5 to 35 hours per week. Most parents practiced

Floortime during sessions that averaged 20 to 30 minute long; however, one parent's

sessions averaged 1 hour, and another parent's sessions averaged 4hours. Although all

programs emphasized Floortime, most parents either experimented with other

intervention methods prior to starting Floortime or used other methods concurrently with
Floortime. The most common treatments used alongside Floortime were biomedical

interventions like special diets and vitamin regimens. Three parents used ABA, and two

used closely related treatments called Pivotal Response Therapy (PRT) and Verbal

Behavior. In all cases, parents consulted with a Floortime professional at least once, and

most parents had the regular help of Floortime professionals, such as occupational

therapists, speech therapists, psychologists, or paraprofessional tutors. The majority of

Floortime activities took place inside the home, and four parents also talked about using

the model in other settings, such as at playgrounds and during other outings. In all cases,

the participant's spouse was also involved in Floortime activities. Two parents talked

about also involving siblings, one parent talked about involving her own parents, and one

talked about including an au pair. All parents typically used Floortime with their children

5 to 7 days a week. In some cases, parents were accompanied by therapists or family

members during therapy hours.

Parents were asked for an approximate number of hours per week during which

they "formally" used the model with their children. Because many parents did not

consider their programs to be formal in a strict sense, and because many in fact stressed

that they incorporated the principles into a "lifestyle" or "24/7" way of being with their

kids, it was often difficult for parents to produce an hourly average. Ultimately, the hours

given by parents for how much time they devoted to Floortime each week were estimates

and did not include casual daily exchanges that may have been informed by Floortime

techniques.
 63

Table 3

Characteristics ofFloortime Use

Participant S D B R J A C M

Age of Child 1.11 3.6 3 2.3 1.6 3.5 4 3

When FT (approx.)
Began (yrs)

Total Time 1.6 5 1 2.9 3.6 3.6 1.6 3.0

FT was Used (approx.)
Intensively
(yrs)

Average 35 25 12 to 15 7 IVi 11 Vi 6'/2 10

Total Time
Participant
Used FT per
Week (hrs)

Average 20 to 30 240(4 60 20 30 20 20 30
Length of hrs)
Sessions
(mins)

Other Non- Biomed TEACCH PRT ABA Bio- ABA, Verbal ABA,
FT ical (briefly) medical Bio- Behavior, Verbal
Interventions medical Bio- Behav-
Tried medical ior

Parent/Child Yes Yes Yes Yes Yes Yes Yes Yes

Worked with
FT
Therapist/Tr
eatment
Team?

Where Did Home Home Home Home Home Home Home Home
Sessions/FT mostly, mostly, mostly, mostly,
Typically thera- some some but now
Take Place? pist's outings outings just
office, about
some every-
outings where

Other Child's Child's Child's Child's Child's Child's Child's Child's

Family father, father, father, father mother father father father
Members mater- sibling sibling
Involved in nal (also a
Treatment? grand- nanny)
parents
 64

Procedures. A number of procedures were carried out to obtain the data for this

study.

Recruitment. Participants were recruited using a "snowball sampling" technique,

in which the researcher initially asked colleagues and other qualified individuals to

spread the word about the project (see Appendix D for sample recruitment letter),

distribute copies of a recruitment flyer (Appendix E), and refer potential participants to

the researcher directly. Attempts were made to have external individuals who were

uninvolved in the research project make the initial contacts with potential participants in

order to protect the individuals' privacy. Initial attempts aimed to recruit solely from the

Bay Area in order to protect sample homogeneity and make in-person interviews

possible. Contacts were made using the following resources: local Floortime clinicians

who work closely with parents; local agencies and schools with Floortime service or

training components; local sites offering parent groups, such as support groups; and

other individuals known to be active in the local Floortime community.

In the end, local recruitment efforts resulted in a small pool of potential

participants, none of whom used Floortime at or near the preferred weekly frequency.

Thus, a wider net was cast, and a decision was made to conduct interviews by phone in

order to accommodate a national sample. The recruitment flyer was posted on a number

of national e-lists and other online communities for Floortime parents and parents of

children with autism. Interested individuals were instructed to contact the researcher to

determine final eligibility. Of the participants who were ultimately interviewed, all but

one learned about the study from postings on online forums, and the other participant

learned about it from a clinician who had seen a posting on one of the forums.
 65

Once participants were selected, interviews were scheduled, and each participant

was sent a letter of introduction (Appendix F), a consent form (Appendix G), a brief

demographic questionnaire (Appendix H), and a list of referrals to mental health services

and other supports (Appendix 1/Appendix J) for reference if they sustained any difficult

emotional reactions as a result of their participation. Ample time was given to ensure that

participants could thoroughly consider the potential risks and benefits of involvement

free of coercion. The letters of introduction and consent informed participants that

although confidentiality can never be guaranteed, it would be protected to the full extent

of the law. The letter stated that the researcher would remove any identifying

information from materials immediately after they were received. The letters also stated

that signed letters of consent would be stored in the locked confidential files of the

Wright Institute's Committee for the Protection of Human Subjects for 2 years and

shredded thereafter. The letters stated that the researcher would store all other materials

in a separate secure location to which only she would have access; although exceptions

were made for transcribers and an internal auditor (described below), who had brief

access to data but no access to participants' names. The letters also informed participants

that their interviews would be audio-taped to ensure the accuracy and completeness of

information collected and that all sensitive interview content (e.g., children's or spouse's

first names) would be held in confidence by the researcher and any external individuals

employed to transcribe or audit the data, who would additionally be required to sign

nondisclosure agreements (Appendix K). Participants were also instructed in advance

that they could be quoted in the final dissertation but that all identifying information

would be disguised.
 66

Each participant returned a signed consent form by mail with the exception of one

participant who provided formal verbal consent instead. The special arrangement was

made because the participant was unable to successfully mail the form and stated a

preference to give verbal consent. The verbal consent was audio-recorded (the

participant was informed that she was audio-taped) and consisted of the researcher

reading aloud the entire consent form and the participant clearly stating her consent,

along with her name and the date. An audio compact disc with the recording will be

stored with the other consents at the Wright Institute for 2 years. The researcher also

obtained the participant's answers to the demographic questionnaire by phone.

Demographic questionnaires. Completed consent forms were assigned a code

prior to being filed at the Wright Institute, and the codes were transferred to the

corresponding demographic questionnaires. Names on questionnaires were blacked out

and replaced with pseudonyms for identification purposes. The codes were used to

anonymously link questionnaires to audio recordings and consent forms, and the first

initial of each pseudonym replaced each actual name in the Results chapter.

Semi-structured interviews. Participants were interviewed individually for

approximately 60 to 90 minutes using a semi-structured interview format. All interviews

were conducted by phone at a time of the participant's choosing. Attempts were made to

interview all participants in the same manner.

The IPA interview format was selected for its flexibility and ability to foster a

conversational tone and open dialogue. Compared to more structured interview formats,

the IPA interviewing style affords researchers considerably more exploratory latitude,
 67

including options to adapt questions based on participants' responses and to pursue

unanticipated avenues (J. A. Smith, 2003).

Interview schedule. An "interview schedule" (p. 57) was created in order to

ground and direct conversations with participants (Appendix L). The standard IPA

interview schedule includes a short list of questions, as well as a set of "prompts" (pp.

59-60) to be used judiciously when participants were overly vague or hesitant.

Employing a technique called "funneling" (p. 60), questions were organized from general

to specific in order to generate data germane to the researcher's original predetermined

interests. Funneling also reduced the risk of the researcher forcing his or her assumptions

on the participant. There are two other reasons why this researcher started with broad

questions and gradually eased into more specific and more personal questions: to build

rapport with the participant and to provide ample opportunity for the participant to freely

detail a narrative and introduce unexpected content. Participants were encouraged to

answer questions in great detail. Because IPA participants are considered to be the

experts on the area under investigation, their segueways are deemed important pieces of

information with the potential to lead the researcher down unforeseen paths. Therefore,

each interview differed slightly from the others based on participants' unique associations

and varying levels of engagement with individual questions. IPA also permits for

adjustments to be made to the interview schedule (and other procedures, as appropriate) if

the first interviews expose flaws or yield unexpected information. This study's first two

interviews revealed that the introductory questions and prompts elicited long, time-

consuming answers, which were often irrelevant to the topic at hand; therefore, in
 68

subsequent interviews, the researcher judiciously omitted questions and avoided

prompting participants unnecessarily.

Development of study questions. Interview schedule questions were designed to

address this study's overarching question: What are parents' experiences and thoughts

with regard to facilitating an intensive Floortime early intervention program for a young

child with an ASD? Questions were arranged in five categories beginning with

introductory questions and then questions about processes, effects of intervention use,

goodness of fit, and support needs. Within categories, individual questions were

developed and organized to follow a logical sequence, beginning with broad questions

and progressively introducing more specific questions. For most questions, numerous

prompts were anticipated and included in the schedule; they were used if and when the

researcher wished to elicit elaboration from participants. Prompts like, "Why was that?"

and, "How was that for you?" were used when necessary. The specific content of

questions was primarily informed by the researcher's review of the literature, which

included recurrent details about parental well-being, identity issues, and changes or

adaptations. While these topics have been well studied in the general population of

parents of children with ASDs, specific information about how they interface with

Floortime was scant or nonexistent prior to this study.

Interview transcripts. Interviews were audio recorded and transcribed verbatim.

Consistent with IPA norms, semantic details were recorded and considered meaningful

data. For instance, transcriptions included words often deemed unessential, such as "um"

and "you know." They also included significant language features, such as intonation

qualities and notable pauses.

 Data analysis. The content of the interview transcripts was analyzed for themes

using IPA's iterative analysis procedures. This process required constant engagement

and scrutiny in which the researcher formed an "interpretative relationship" (p. 64) with

the material. It began with careful, repetitive readings of transcripts, followed by

thorough note-taking and theme-reduction. Finally, the results were used to develop a

narrative final statement about potential meanings of participants' experiences. It is

possible to group the IPA procedures used for this data analysis into five stages:

1. Initial transcript readings and note-taking. The researcher read transcripts

multiple times and recorded unlimited notes, ranging from associations to

summaries.

2. Initial theme reduction. Each set of initial transcript notes was reviewed and

abstracted into a list of more essential themes about what each participant was

saying.

3. Theme connection. A list of emergent themes was created and sifted through

to develop connections in the form of "superordinate" themes (p. 71) and

"clusters" of themes (p. 72). Painstaking steps were taken to ensure that

connections accurately captured participants' most salient concerns.

4. Theme organization. Themes were organized into increasingly logical

patterns and final clusters. Transcripts were continually compared and

contrasted with other transcripts to ensure accuracy and relevance.

5. Theme write-up. Themes were listed and expanded on in a narrative analysis.

Findings were related to existing literature on the subject under investigation.

 70

Presentation of data. The Results chapter presents data in three forms: (a)

tables, (b) a narrative theme analysis, and (c) transcript extracts. Tables are commonly

included in IPA results sections to schematically represent information and ensure

transparency and clarity (J. A. Smith, et al., 2009). This study used tables to present

select raw data (e.g., demographic details), as well as major themes and findings. The

researcher's interpretations were elaborated on in the write-up's narrative theme analysis,

along with a discussion of how the findings relate to the extant literature. Smith (2009)

advises researchers on the importance of balancing original analysis with raw transcript

excerpts:

You are attempting to capture something of the lived experience of your

participant but that inevitably invokes interpretations on your part. One
way of looking at the write-up is to think of the extracts from the
participants as representing the P while the analytic comments on the
material form the I. Thus an IPA narrative represents a dialogue between
the participant and researcher and that is reflected in the interweaving of
analytic comments and raw extracts, (p. 110)

As such, a 'case within theme' write-up style was used; each superordinate theme was

thoroughly interpreted in its own section and evidenced with transcript extracts from each

participant's case.

Validation measures. Extensive measures were taken to ensure the validity of

results. The credibility of qualitative methods is commonly contested, as the traditional

measures of validity and reliability used in quantitative research tend not to apply to

qualitative research (J. A. Smith, 2003). Credibility was addressed by using a number of

measures deemed appropriate for safeguarding the integrity of qualitative data. The

measures were checked for consistency with IPA's epistemological foundations.

 71

Record-keeping. One way the researcher established trustworthiness was by

maintaining thorough records of her research process, creating a "chain of evidence" (J.

A. Smith, et al., 2009) that could be easily followed by another individual to ensure that

final arguments are credibly grounded in raw data and logical analysis. The chain

included: annotated interview transcripts, detailed notes chronicling analysis decisions,

the dissertation proposal, and the final dissertation. All written documentation were filed

systematically and stored with audiotapes and any other non-written materials.

Independent audit. The files were reviewed for validity by an individual who

was not involved in the project. The auditor, a student who had previous experience with

qualitative psychology research, performed a "mini audit" (J. A. Smith, et al., 2009) by

reviewing the first annotated interview and checking it with the researcher's initial set of

notes, categories, and themes to ensure that they were applicable to the topic and research

approach. This study assumes that there is no one correct interpretation of qualitative

research data. It takes a constructivist approach to knowledge, which assumes the

existence of multiple views of reality and truth. Smith (2009) asserts that "the

independent audit allows for the possibility of a number of legitimate accounts and the

concern therefore is with how systematically and transparently this particular account has

been produced" (J. A. Smith, et al., 2009). For these reasons, the auditor checked for

logic and consistency rather than correctness or singular objective 'right' answers. No

adjustments were needed.

Notated transcript sample. Another measure to guarantee credible results was the

inclusion of a sample page of one of the notated transcripts in an appendix (Appendix M).
 72

This offers the reader a visual depiction of how the researcher made sense of the data,

thereby contributing to even greater levels of transparency and credibility.

Additionally, the researcher followed seven guidelines established by Elliott et al.

(1999) to ensure the credibility of qualitative research in psychology and related fields:

1. Owning one's perspective. The researcher disclosed her theoretical

orientations and relevant beliefs prior to conducting research (see "Notes on

assumptions" below) in order to help readers interpret and understand the data

in the context of possible assumptions.

2. Situating the sample. Participants are thoroughly described (see Results

chapter) in order to help readers consider the populations and circumstances to

which the data might be pertinent.

3. Grounding in examples. By offering examples of the data, the researcher

demonstrated her analytic methods, thereby allowing readers to see how she

made sense of data. Examples also permit readers to consider other possible

meanings of the data.

4. Providing credibility checks. In order to demonstrate the credibility of themes

and categories, the researcher "checked" (p. 222) her understandings with an

individual who had characteristics similar to those of the participants. This

step took place after the mini audit and after the data analysis was complete.

The credibility checker was a prior colleague and friend of the researcher who

used Floortime for over a year with a child with an ASD who was under 5

years old at the time of intervention. The credibility checker reviewed the

findings that were identified by all eight participants. She agreed with all but
 73

two closely related findings. The divergences are detailed in the Discussion

chapter.

5. Coherence. The meanings of the phenomenon under investigation were

organized to provide a coherent "data-based story/narrative, 'map',

framework, or underlying structure" (p. 223). When appropriate, charts and

other graphic visualization tools were used to clearly illustrate categories and

relationships.

6. Accomplishing general vs. specific research tasks. Generalizations were not

made unless sufficient examples were available. Limitations to

generalizability are addressed explicitly in the limitations section of the

Discussion chapter.

7. Resonating with readers. Data and understandings were presented in such a

way that the experiences under investigation were brought "to life" (p. 224)

and were intended to "accurately represent the subject matter or to have

clarified or expanded [the readers'] appreciation and understanding of it" (p.

224).

Notes on assumptions. Although measures were taken to minimize the effects of

biases on results, interpretations are expected to include the researcher's preconceptions.

The IPA approach deems interviews and analyses to be dynamic processes in which

meanings are co-created between the experiences, beliefs, and perceptions of both the

researcher and the participant. As such, the model contends that it is unfeasible to isolate

the researcher's experiences and prevent them from influencing results (J. A. Smith,

2003). However, as consistent with IPA practices, efforts were made to address biasing
 74

effects related to the researcher's prior experiences. She made conscious, consistent

efforts to be aware of her assumptions and prevent them from influencing methods and

results whenever possible.

The researcher acknowledges that aspects of her background could influence

assumptions. She has clinical experience facilitating Floortime and other play- and

relationship-based interventions with children who have ASDs. She has received

supervision in the model, and she obtained training in a DIR/Floortime infancy and early

childhood training course taught by Stanley Greenspan and Serena Wieder. Prior to

commencing her research, she had several brief, casual discussions with parents about

their experiences with the model. In preparation for this study, she also informally

consulted with several Floortime clinicians to inquire about the topic's relevance and

clinical utility. In several instances, clinicians shared anecdotes and thoughts pertaining

to the topic.

It is therefore assumed that the researcher's background contributed to her

thinking about the study; however, it should be noted that attempts were made to

maintain an open mind and separate subjective knowledge from knowledge derived from

the literature. For instance, the researcher considered designing specific interview

questions based on assumptions that parents' relative tolerance for ambiguity and

capacity to play directly impact their levels of compatibility with Floortime. After

reflection on the origins of these expectations, she determined that they originated from

her personal experiences with only a few parents, so the questions were omitted in an

effort to eliminate leading questions and minimize biasing effects. In contrast, the extant

literature was allowed to guide the inclusion of some assumptions in questions. For
 75

example, the literature led the researcher to anticipate that differences between

individuals' experiences will emerge and relate to the unique qualities of each parent.

Therefore, some interview questions reflected an expectation that parents' opinions and

experiences of the model vary depending on their preexisting personalities, relational

styles, and values.

 76

Chapter 4

Results

The participants. S is a 36-year-old mother of a 3-year-old boy who was

diagnosed with medium-functioning autism at age 2 and who is currently considered to

have high-functioning autism disorder. S began using Floortime with him just before his

initial diagnosis. She reported that she used the intervention intensively for 1.5 years.

On a weekly basis, she used it approximately 35 hours total, which were usually broken

down into 20- to 30- minute sessions. At the time of her interview, S still used the model

with her son.

D is a 35-year old mother of a 14-year-old boy who has high-functioning autism

disorder. Her son was first diagnosed with an ASD at about 2 years old, and he was

about 3.5 years old when they started using Floortime. The intervention was used

intensively for approximately 5 years, during which time the number of hours devoted to

Floortime per week varied between 25 and 40 hours, though a typical week tended to

include 25 hours of therapy. Individual sessions usually lasted four hours, and service

providers were present with D and her son during most sessions. D's case was unique

because she went to extensive lengths to secure trained professional help. She actually

paid for all providers to be trained in Floortime technique and even sent them to

conferences. When interviewed, she and the professionals who worked with her son

were still using some Floortime strategies with him.

B is a 46-year-old mother of a 4-year-old boy with high-functioning autism

disorder. Her son was diagnosed with an ASD at age 3 and began receiving Floortime

treatment the same year. Treatment was intensive for approximately 1 year. An average
 77

week included 12 to 15 treatment hours, which were usually comprised of one-hour or

longer sessions. Professionals were present during approximately 8 to 12 of those hours.

B's program differed from that of most other parents, because hers involved quite a bit of

PRT in addition to Floortime, whereas most parents used only Floortime and possibly

some biomedical interventions. She felt that PRT was consistent and compatible with

Floortime. At the time she was interviewed, B was still actively using Floortime with her

child.

R is a 49-year-old mother of a 5-year-old boy with high-functioning autism

disorder. At the time Floortime began, R's son was 2 years, 3 months old, and he was

diagnosed with an ASD later that year at 2 years, 8 months old. The model was used

intensively for almost 3 years, during which time average weekly use totaled 7 hours

(however, she emphasized that she used Floortime "unofficially all day long"), which

were usually broken down into 20-minute increments. At the time of her interview, R

was no longer using Floortime with her son.

J is a 39-year-old father who has a 7-year-old boy with high-functioning PDD-

NOS. His son was first diagnosed with an ASD at 1 year, 6 months old and began

Floortime at the same time. The father and son used the model intensively for three and a

half years, at first using it 40 hours per week, but ultimately averaging approximately 7.5

hours per week. Sessions typically lasted 30 minutes. J was no longer formally using

Floortime at the time he was interviewed.

A is a 38-year-old mother of a 7-year-old girl with medium-functioning autism

disorder. Her daughter was almost 3 years old when she was diagnosed with PDD-NOS,

and the diagnosis was changed to autism disorder almost 2 years later. They began
 78

Floortime when the daughter was 3 years, 5 months old. The model was used intensively

for 3.5 years. An average weekly schedule consisted of 20-minute sessions, totaling 11.5

hours per week. At the time of her interview, A was still using Floortime with her

daughter.

C is a 36-year-old mother of a 9-year-old boy who has medium-functioning

autism disorder. The son was diagnosed with an ASD at about 3 years old and started

receiving Floortime intervention at 4 years old. Treatment was deemed intensive for

about 1.5 years. On a weekly basis, Floortime was used about 6.5 hours per week,

broken down into 20-minute increments. By the time she was interviewed, C no longer

used Floortime formally with her son, but she continued to use the basic principles.

M is a 36-year-old mother of a 6-year-old boy with medium-functioning autism

disorder. Her son received an ASD diagnosis at 2 years, 3 months old, and he began

Floortime at 3 years old. Intensive intervention lasted for 3 years, during which time

weekly usage averaged 10 hours per week and consisted of 30-minute sessions. M and

her son were still actively using Floortime at the time of M's interview.

Clusters and themes identified. The data analysis resulted in the identification

of 168 initial themes, all of which were endorsed by at least two participants. Themes

were reduced and abstracted into 51 final superordinate themes, and the superordinate

themes were arranged into five clusters: Finding Floortime, Doing Floortime, Effects of

Floortime, Goodness of Fit, and Support Needs. Some of the themes in clusters 1, 2, and

4 were further divided into sections for purposes of clarity and organization. For

example, the themes in Cluster 2, Doing Floortime, were grouped into three sections:

Early Process, General Process, and Coping.

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Table 4 identifies all clusters, sections, and superordinate themes, and it lists the

number of participants who supported each theme. In the written body of this section,

each theme is elaborated on and illustrated with select quotes and examples, which were

chosen for their salience or goodness at depicting a given theme.

There is overlap between some themes and clusters. In many cases, participants'

responses were arranged into multiple categories. Because a single quote or example can

express more than one meaning, some are used more than once. However, for the

purpose of readability, attempts were made to avoid excessive repetition.

In order to convey responses in a natural form, minimal changes were made to

participants' quotes. For instance, semantic details like "um" and "you know" were

retained, and other conversational features like laughs and notable intonations were not

omitted. In some cases, words were added to quotations when the meaning of the

original language was unclear. Changes are indicated with brackets.

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Table 4

Clusters/Sections and Superordinate Themes Identified in Participant Responses

Number of
Clusters/Sections with Superordinate Themes Participants
Cluster 1: Finding Floortime
Diagnosis Reactions
Negative emotional reactions 8
Positive emotional reactions 3
Decision to use Floortime
Negative experience with ABA 7
Intuitive fit 8
Not dogmatic 3
Healing must be parent-driven 4
Emphasizes relationship 4
Emphasizes family 4
Healthy developmental model 4
Comprehensive 2
Automatic decision 4

Cluster 2: Doing Floortime

Early Process
Diving in 4
Hard at first 7
A lot of learning 7
General Process
Pressures of parental responsibility 8
Getting stuck is hard 3
A roller coaster 4
Progress is rewarding 8
Negotiating multiple roles 6
Isolating 7
Tolerating ambiguity 4
Exhausting 8
Becomes a lifestyle 8
It gets easier 8
Some aspects get harder 2
Floortime standards are too high 3
The type of person you are can impact experience 7
Shifting mental states can impact experience 5
 81

Number of
Clusters/Sections with Superordinate Themes Participants
Coping
Putting child's needs above own 8
Using others to cope 8
Using self/own mind to cope 4
Practical adaptations 6
Withdrawal and denial 3

Cluster 3: Effects of Floortime

Intrapersonal transformation 8
Interpersonal transformation 8
Parent-child relationship improved 6
Few changes when already a good fit for FT 4

Cluster 4: Goodness of Fit

Was the right intervention, despite struggles 8
You're either DIR or you're not 2
Helps to have compatible personality, but not
necessary 3
Accepts centrality of parent 6
Values
Strong family values 8
Child-centered values 8
Personality Traits
Confidence and strength 4
Capacity to play 5
Tolerance of ambiguity 4
Capacity for self-reflection 4
Compassionate 3
High standards for self 4
Introverted 2

Cluster 5: Support Needs

Emotional and practical support is critical 8
Clinicians can dramatically influence quality of
parents' experiences 8
 82

Cluster 1: Finding Floortime.

Cluster 1 includes themes related to finding Floortime. The themes are listed in

Table 5 and described in detail thereafter.

Table 5

Superordinate Themes for Cluster 1: Finding Floortime

Sections with Superordinate Themes

Diagnosis Reactions
Negative emotional reactions
Positive emotional reactions
Decision to use Floortime
Negative experience with ABA
Intuitive fit
Not dogmatic
Healing must be parent-driven
Emphasizes relationship
Emphasizes family
Healthy developmental model
Comprehensive
Automatic decision

Diagnosis Reactions. This section describes diagnosis reactions that were

present around the time that parents first researched the model.

Negative emotional reactions. All eight participants recalled experiencing strong

negative emotional reactions to learning that their children had ASDs. Common

responses to diagnoses included shock, denial, depression, anxiety, overwhelm, and

frustration.

Shock and denial. R remembered her disbelief when a professional told her that

her child had an ASD: "There's no way—surely she's got this wrong. Surely, it's just

something else and you know because we knew—we just couldn't believe the horror of

that." Even though C long suspected that her child had a developmental disability, she
 83

was still taken aback when she received the formal ASD diagnosis, in part because she

did not know much about autism. It took a long time for her shock to wear off and, in the

meantime, she often denied the reality of the diagnosis. When D received the news, she

was so flooded by surprise and emotion that she recalled only hearing 10% of what the

diagnosing clinician had to say, and she wept inconsolably during her entire drive home

from the clinician's office.

Devastation and mourning. Many parents described feelings of profound sadness

about their child's diagnosis, which they commonly viewed as bleak or even as hopeless

as, in A's words, a "life sentence." As such, it was common for parents to describe a

process of grieving a lost version of their child or mourning what they had once dreamed

of for the child's future. J poignantly illustrated how his dramatic reaction plunged him

into a sudden state of despair and mourning:

It's like the Challenger disaster. I mean, that's exactly how I would feel.
My life was going like a rocket and it just plummeted from there. It's a big
letdown... .Um, I mean I never wanted to think about myself, you know
what would happen to me, my people, that kind of thing. Then suddenly I
have to think about that and um that's a huge reversal. And um yeah it
was a very depressing experience. Your whole world basically comes
crashing down on you. Um it's yeah it's extremely hard to explain
actually. Very very tragic. Um you are in continuous mourning. It's 24
hours of the day, every day in the year basically that you are mourning
what you lost, so it's a very powerful experience. Very powerful.

An insidious feeling of helplessness compounded J's devastation. He talked about how

painful it was to watch his child remain retreated in "his own world" despite J's efforts to

coax him out. J talked about how limited he felt when no amount of his love or care was

useable to his child. To make matters worse, the cumulative effect of J's emotional state

took a toll on his self-concept. He described how he compared himself to another father

he saw on the street, who was playing with his typically developing child:
 84

Here I am. I'm actually worse off than that guy is how, you go through a
minimization of yourself. Um that you are absolutely worth nothing, that
your life is basically become zero. There is no meaning, nothing for you
to do again. I mean, you're done. You're done basically. So, it's very
powerful, and it has lasting impact on your sense of self, your sense of
life, everything.

J and some other parents described how despair and preoccupation led them to self-isolate,

which only further compounded their depression. J explained how he cut out all nonobligatory

facets of his life, including friends:

Yeah, basically I lost contact with everybody. Um whoever I—anything

that is optional in my life, any action that is optional or not necessary was
cutoff. Um, no contact with friends. It's completely like you're shutting
yourself off. And only from life into a mere existence... .Um, we just
didn't have the mood to talk to anyone. It was yeah for a lot of people, I
ceased to exist.

Fear and anxiety. Many parents remembered being filled with anxiety around the

time of diagnosis, and they named a large variety of fears, some of which included:

trepidation about a child's long-term future, nervousness about the idea that they could

permanently lose the child to the diagnosis, and worries about how they themselves

would rise to the occasion. R aptly described how unrelenting her fear was:

When somebody tells you there's something devastating to your child, and
there's reasons your son can't talk, it is very overwhelming, and it just
rains fear on you that you're not going to be able to help that child. I
really think that's a pretty good description—it does.

Overwhelm. All but one parent referred to feelings of overwhelm. Oftentimes,

parents recalled feeling clueless about what autism was, let alone how to go about

helping their children. Many parents felt daunted by the large amount of information

given to them by professionals or that they found through their own research. Some

talked about the countless days or weeks they spent making phone calls, highlighting how
 85

stressful it was to bear the responsibility of choosing an intervention method and hiring a

treatment team.

Time pressures intensified feelings of stress and helplessness for some. For M,

research became an obsession, a way of channeling her anxiety into a mission to find an

answer to questions about what to do next. She recalled how the possibility of a cure

contributed to her sense of urgency:

You know, it was a race against time. That was my main feeling. I didn't
know, I just, I remember feeling desperate that I wish I could just stop
time, like literally. Because I felt that there was an answer; there was a
magic answer. Four years later, I know there's no magic answer, but back
then I thought there was a magic answer, and I really wished I could find
it. You know and so I was obsessed with researching everything 'cause I
felt that the answer was there... if I would j ust find it.

Frustration with lack of protocol. Another common theme was frustration

regarding a lack of clarity about how to proceed with treatment after receiving the

diagnosis. Parents often experienced major dissatisfaction with the diagnosing

professionals, whom they regularly regarded as unknowledgeable, unhelpful, and

overconfident. Similarly, parents were sometimes disappointed and confused by the

large amount of information about ASDs on the internet, which was often excessive and

conflicting. D recalled her early research process and why she was left feeling unsure

about what to do next:

.. .first it was just kind of absorbing the fact that there wasn't anything sort
of concrete and everything was sort of wishy washy and although
everything you read is authoritative, or at least sounds authoritative, it's all
different.. ..It was it was literally everything you would read sounded
authoritative, yet everything you read contradicted what you read five
minutes earlier. And I think for us what was so frustrating was there was
no protocol on even how to begin to attack this, how to address it, and that
for me was probably one of the most frustrating things.
 86

Positive emotional reactions. It was far less common for parents to cite positive

emotional reactions to the diagnosis than negative reactions; in fact, only three referenced

positive emotional experiences. The only recurring response was relief related to finally

having a definitive explanation for a child's symptoms and behaviors. A's first reaction

was: "That explains a lot." Similarly, B described her reaction as "enlightening," because

she was finally able to understand the basis of her child's struggles.

Decision to use Floortime. This section describes themes related to how parents

ultimately chose to use Floortime.

Negative experience with ABA. During the process of finding Floortime, seven

parents also investigated or tried ABA. These parents all expressed some form of

dissatisfaction with ABA based on either researching the model or trying it. Most

commonly, parents reported feeling repelled by ABA's techniques and theoretical

underpinnings, finding them to be "cookie cutter" or overly mechanical. Typically, the

model did not strike parents as resonant with their families' values and ways of being.

For example, B declared simply: "ABA is not our style." She explained that the model

was "too regimented" for her and her husband, and she thought their laidback approach to

life would clash with the model. Floortime was more appealing to her because their style

was more about getting down to a child's level and playing.

Top-down. Some were critical of ABA because they considered its approach to

children to be top down. B and R observed ABA to be overly forceful and not reliant

enough on a child's uniqueness. B said: "I describe Floortime as getting into someone,

you know getting into him from the inside out instead of changing his behaviors, which

ABA does from the outside in." R went so far as to call ABA "brutal," and she offered
 87

an opinion similar to B's: "It's applying behavior and not allowing the child to grow

themselves." In some cases, parents thought behavioral techniques were actually

inhumane. After attending an introductory meeting about ABA, D thought to herself:

"Oh my God, they are doing the same exact thing with that kid as we were training our

dog."

Not relevant to real life. Some parents thought ABA did not teach children skills

that would be germane to what they considered to be central life priorities. For instance,

it was common for parents to stress how important they believed the ability to form

meaningful, loving relationships is in life; and they felt that ABA did not adequately

support those aims. C, a mother who was relatively uncritical of ABA, talked about why

she switched her child from ABA to Floortime: "Yes, he was learning what they were

teaching him, but we felt like what they were teaching him wasn't relevant to real life."

She went on to explain that she wanted her son to learn how to "converse" rather than

merely speak. She added that, with ABA, "you're not teaching the child why they need

to mimic them and you're not teaching the child why you need to learn yes or no." R

similarly explained that she preferred Floortime because, in her opinion, it is better at

teaching children to communicate in meaningful ways, which she felt was more

important than teaching children discrete words and skills. Another recurring complaint

was that ABA did not teach children to participate in groups, such as families or peer

situations.

No warmth or love. One parent, a psychotherapist, had previous work

experiences using ABA with children on the spectrum, and her negative recollections of

the model helped her know immediately that she would not pursue it. She recalled
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feeling repelled by the model's seeming lack of love and warmth. Like some other

parents, she was turned off by techniques that aimed to extinguish behaviors—namely,

strategies that she considered to be punitive.

Unsuccessful. The parents who tried ABA felt that the model was unsuccessful at

teaching their children what they wanted their children to learn. A and B added that the

model was not only unhelpful, but that it also had adverse effects on their children. A

recalled that ABA caused her child to become agitated. B also claimed that ABA had

distressing effects on her child and added that she thought her child felt "abused" by the

techniques, as he temporarily stopped talking and would often leave therapy sessions in

tears.

One parent, C, described a Floortime culture in which parents are quick to bash

ABA. She felt that parents were overly critical, and she actually believed that the ABA-

bashing culture negatively impacted her transition to Floortime. It caused her to question

if she was an appropriate fit for the model and contributed to her preexisting doubts.

Intuitive fit All parents except one described feeling an intuitive pull toward

Floortime.

It just made sense. More than one parent said Floortime "just made sense" or

described a similar sentiment. S said: "Everything clicks for me with the model." C,

who was slower and more deliberate than the other parents with her decision to use

Floortime, said the model "makes a lot of sense" and that "it seems like less of a therapy

than a common sense way of living and parenting."

Fit preexisting values and parenting style. For many parents, Floortime clearly

suited their preexisting value systems and parenting styles. Using the model was a "very
 89

easy choice" for D, who said: "It was the [methodology] that just already meshed with

our lifestyle." A voiced a similar process of arriving at her decision to use Floortime: "I

think my final decision was really trying to find something that was going to be a better

fit for me and I think would be a better fit for my child too." When J went on the internet

to find an intervention, he also relied on his instincts to find the right model. He talked

about the importance of finding a good philosophical fit:

I would not take things because they are prescribed by somebody; it has to
just sort of agree with me, so I had to feel convinced at a principle level—
at a fundamental level—rather than at a superficial level. So, as soon as I
read the description of Floortime, I mean I went on the 'net and I kind of
started reading about things as I suspected there was something wrong
with my child, and it when I read about Floortime, it completely agreed
with me, with my outlook and so on.

Not dogmatic. Part of Floortime's appeal for three parents was that it struck them

as less prescriptive than other models. Many were advised early on to try ABA because

it was in many ways the least ambiguous model and certainly the most popular; and they

described making conscious decisions to risk taking "the road less travelled." J described

himself as someone who does not take something just because it is prescribed. Instead, it

must really resonate with him. D's attraction to Floortime was influenced by that fact

that it was less about regimen and more about the quality of experience. She said:

I mean even though it's a 24/7 always doing it sort of thing, but it's about
the quality of the interaction and not just this dogma of you need to do 40
hours a week kind of thing. It emphasizes the quality and I think that's
one of the things that made me respect the philosophy most.

Healthy developmental model Another reason why four of the parents were

attracted to Floortime was because it centers on what they deemed to be a healthy

developmental model. J's final decision to use the model was facilitated by his intuitive

resonance with Floortime's focus on a ladder-based model of development. He recalled:

 90

It seemed to make a lot of sense, and it seemed to agree with what I felt
about a child and his potential and what childhood is all about, what
development is all about Um, what growth meant in real terms, so it
seemed to agree with what what I intuitively felt, and I had no—that was it
for me—there was no hesitation in my mind whether it was going to work
or not I knew it was going to work, because it absolutely made sense So,
okay, this is it, and this is a developmental model that makes sense
Development is stepwise, and there are steps, and it's beautifully
described, let me just go get the book, read it, and start doing it Um, there
was no hesitation There was no gap between knowing about it and
starting to do it basically

Healing must be parent-driven. Four parents expressed that a major draw to

Floortime was its emphasis on the centrahty of the parent in treatment These parents

usually stated a belief that primary caregivers and their children have unique relationships

that should be capitalized on and supported S did not question whether or not she would

be centrally involved in her child's therapy She said emphatically "And who else—with

the guidance of a DIR professional—who else to be an integral part of that child's

healing than the parents9 It's got to be parent-driven " R agreed, asserting that parents

need to be on the "front line of communication" with children who have ASDs She

added her belief that the parent needs to be the one "taking command of everything,"

because children most want to communicate and be with the parent

Emphasizes relationship. Four parents were drawn to Floortime in part for its

emphasis on relationships When asked about their values for themselves and for their

children, parents regularly highlighted the importance of communication, socialization,

and intimacy All parents recalled their own happy childhood memories that involved

closeness or at least one key early relationship with a family member Many wanted to

offer their children similar experiences, and some fundamentally believed in the
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importance of relationship in early development A talked about a related reason why

Floortime appealed to her more than behavioral models

I really believe in the sort of core theory m Floortime in the sense that you
know the parent does have that unique relationship with their child and
that you can really capitalize on that relationship and that that's so
important, like if you can't have relationships with other people, you're
not going to go far in life, so for me it you know that overrides whether or
not she can match a VCR to a picture of a video tape

When R discussed her value system as it relates to her long-term goals for her child, she

referenced the dual importance of independence and interdependence Like A, she also

thought it was more important for her child to learn how to interact than to acquire certain

non-relational, discrete skills She said

No man is an island And unfortunately, autism isolates everybody, so

you know we're doing everything we can to try to teach him that he needs
other things You know, other values, other than just playing a video
game That he has to spend time with us

Ultimately, one major reason why R chose Floortime was because she believed its

relational focus could help her son "stand on his own two feet" and make use of other

people throughout his life

Emphasizes family. Four parents also cited Floortime's emphasis on family as a

critical factor in their decisions to use the model R was particularly impressed with her

sense that "Floortime shows you how to be part of a family," which she believed "was

never part of ABA " Prior to using Floortime, she observed that her child did not know

she was his mother, instead, she was a means to an end—namely, the person who got him

his cookies Due in part to her strong family values, it was crucial to her that her child

learn to both know that he is a member of a family and be able to make use of his family

She said
 92

With Floortime, you are being a family with everything—whether you're

sitting on a floor playing row row row your boat together or playing stop
and go, where you just run around the room and you say run, run, run, run,
stop and everyone stops and you giggle and you play, and you begin to
build a relationship

Comprehensive. Two parents were attracted to Floortime for its comprehensive

approach to treatment Parents appreciated that the model considers the "whole child,"

not just isolated aspects of the child like speech or sensory integration capacities A

commented on how the integrative approach was a "huge motivator" in her decision to

use Floortime

I knew again that was just one of those things that you have that
intuitiveness where you're like no, I know that this is wrong on some level
that [the ABA clinicians] are not embracing this and not listening to me
and not really helping her, because if you're not going to look at all the
components of all of her issues, then how are you ever really going to get
to the bottom of it all There's a lot of different issues with her

Automatic decision. Despite their negative diagnosis reactions, all but one parent

described going into a type of "action mode" almost immediately after learning that their

children had ASDs These parents described how they launched into research, promptly

organized treatment teams, and began intervention as soon they could Some described

sleepless nights and marathon sessions surfing the internet J emphasized that there was

no gap between reading about Floortime online, settling on it, and starting to use it with

his son, who was in the same room with him at the time S remembered her decision to

use Floortime "I didn't flinch in realizing the importance of DIR and needing to pursue

that even though it was going to be a road less travelled " Like J and S, many other

parents linked the intuitiveness of their gravitation to Floortime with their automatic

decisions to use the model—and in some cases, their instant confidence that it would

work The only parent who did not mobilize right away was C, who explained that her
 93

initial despair and lack of acceptance of her child's diagnosis resulted in simply not

knowing what to do

Cluster 2: Doing Floortime.

Cluster 2 includes themes about the process of using Floortime, which are

introduced in Table 6 and then elaborated on in detail

Table 6

Superordinate Themes for Cluster 2 Doing Floortime

Sections with Superordinate Themes

Early Process
Diving in
Hard at first
A lot of learning
General Process
Pressures of parental responsibility
Getting stuck is hard
A roller coaster
Progress is rewarding
Negotiating multiple roles
Isolating
Tolerating ambiguity
Exhausting
Becomes a lifestyle
It gets easier
Some aspects get harder
Floortime standards are too high
The type of person you are can impact experience
Shifting mental states can impact experience
Coping
Putting child's needs above own
Using others to cope
Using self/own mind to cope
Practical adaptations
Withdrawal and denial

Early process. This section describes themes related to the early process of using

Floortime
 94

Diving in. Four participants reported that they immersed themselves in Floortime

during the first months of using it They described a process of learning as much as they

possibly could about the model—undertaking massive amounts of reading and other

research, seeking out knowledgeable professionals, and launching an intensive

intervention program almost immediately R described the focus and dedication required

of her during the early immersion process She highlighted the fact that during the early

months, Floortime did not yet feel natural to her, and it therefore felt quite effortful She

remembered

I would say [the first] six months was very intensive, very adamant to
where that every single word that came out of my mouth was directed
toward my child was I think geared from Floortime, and trying to tram
myself in everything I did because these children don't learn actively, they
learn passively And it's they don't seek out learning They don't seek
out being with you, and you know so with that, it's just really hard to
understand That's what the first 6 months is—just very intensive

Hard at first. Seven participants found that the earliest stages of learning and

using Floortime were particularly difficult Some attributed this difficulty to the child's

lack of responsiveness and other unfavorable behaviors, which made it difficult to initiate

reciprocal interaction Talking about the early period, C recalled "I hated it1 Yes, a lot

of the time because it was like pulling teeth and because it was such a—that still probably

is for me one of the most painful things about the autism diagnosis is the lack of play "

Some parents recalled a type of intensity that characterized their early experiences

with the model S described being so motivated to help her child that she put herself into

"turboboost" early on Similarly, R remembered going "full throttle" during her early

attempts at using Floortime For six months, she was extremely deliberate about every

intervention and interaction with her child A similar type of focus was described by
 95

other parents, along with observations about the immense amount of physical and mental

energy that was demanded of them Early on, C felt burdened by the rigidity of

scheduled play sessions and experienced relief when she loosened her expectations as

time went on

Another example of early difficulties involved parents' self concept Several

parents reported feeling insecure about themselves at first D described feeling "clumsy"

and "unsure" of herself when she first started using the model M described feeling both

self-conscious herself and highly conscious of how others perceived her child, as she

desperately wanted people to observe his capabilities and share her hope for his potential

She talked about her initial lack of confidence

I used to feel very incompetent I used to feel like a fool, especially

being videotaped Oh my God, everything looked so forced My child
wouldn't perform on video at all Everything looked so stupid It was
embarrassing

A lot of learning. The learning curve was steep for many parents during the early

stages of doing Floortime Seven participants shared thoughts about learning to use the

model Parents took advantage of a variety of Floortime resources, including internet

research, which included reading articles and blogs, as well as watching online videos,

professionals consultations and collaborations, books, video tapes, online hstservs, and

conferences and classes Parents who lived m relatively remote areas were more likely to

rely almost exclusively on self-education than parents who lived in areas where Floortime

professionals were easily accessible

While many parents emphasized the large amount of learning that took place early

on, few singled it out as one of the more difficult aspects of doing Floortime In fact,

some spoke about how enriching and exciting it was Some talked about how knowledge
actually had a soothing or relieving effect, gave them a sense of control, and equipped

them to tackle their next steps Whereas some parents felt incredibly helpless during the

time around diagnosis, learning Floortime was often experienced as a great relief,

because it gave parents ways to immediately intervene and interact with their kids

S was a parent who considered one of Floortime's greatest strengths to be that it

"arms you with knowledge " When she first researched the model, she was relieved that

its major principles not only made immediate intuitive sense to her but also seemed

feasible Additionally, her research bore quick results, which gave her added confidence

and provided confirmation that she made a good choice when settling on the model She

remembered why the learning process was so comforting

The most reassuring thing was that you just meet him where he's at, and
that's okay It was very respectful of him And it took no time when you
know how to meet a child at their level and respect their sensory system
It doesn't take a lot of time to start to get that kind of engagement and
interaction But just to know that there were skills and strategies that I
could use, just to immediately start to get that kind of engagement, you
know, those were times when I didn't have anxiety And it propels you to
keep doing more and more Floortime So, those early months were really
learning from my child The more knowledge you have, the less fear you
have The more you are able to do for your kid So, um, I mean I really
hitched my wagon to it because I believed in it and I saw the results So I
mean [the learning] was probably the least of the overwhelming
components of it, because at least it was something I could do to heal him

Insatiable S was also one of two parents who described having an insatiable

appetite for knowledge, especially early on in the learning process She said "I couldn't

get enough of it I still can't get enough of it" The other especially eager parent, D,

recounted her reaction to her initial introduction to the model "From that point on it was

like Tell me everything you know about Floortime " Other parents described spending
 97

entire weekends or sleepless nights reading books by Stanley Greenspan and Serena

Wieder

Have to learn by doing Reading was not, however, always the most effective

means of learning how to use Floortime Some parents clarified that reading materials

about the model helped them absorb Floortime's theoretical underpinnings but did not

always help them learn to do Floortime Instead, these parents stressed the importance of

learning by doing Despite working with a Floortime therapist and reading a considerable

amount, R felt that Floortime is not something one can pick up in a book She benefited

much more from watching videos on Youtube and other websites B was a parent who

described herself as a "doer" and not a researcher In fact, she read very little about

Floortime, so she attributed the majority of her learning to "doing" the work and learning

from her child

General process. Themes about the general process of using Floortime are

described in this section

Pressures ofparental responsibility. All participants talked about ways that they

felt responsible for their children Many described feeling drawn to Floortime because

they believed fundamentally that it is the parents' job to guide and teach their children A

described her mentality "She''s your child You've got to do something about this

You've chosen this model You've chosen this, and this is on you "

It depends on the parent Many parents evidenced ways that Floortime actually

exerted pressures on the parent to assume a tremendous amount of responsibility for the

child's progress and well-being The results were mixed, with most of these parents

claiming that parental responsibility had both advantages and disadvantages For
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instance, A touched on some personal benefits of progress and some personal

consequences of lack of progress

Another element of Floortime that can be challenging is that it depends a

lot on the parent, and as a result, it's a lot of you know if your child is
making progress, you can be like, woo, that's great, I did that And if your
child is not making progress, you can be like, shit, I'm doing something
wrong, you know so it's there's a lot of kind of bemg willing to accept and
shoulder that responsibility, and There's days when / don't want to do it'

C echoed the idea that Floortimers are vulnerable to a belief that a child's lack of success

could signify parental culpability She said

One of the things that struck me about Floortime and Greenspan was you
know all the research I had done, all the things I had learned, Floortime
was the only thing that ever gave me the impression that it was kind of the
parent's fault And that was always the thing like oh the poor mothers
back in the 60s—the refrigerator mothers—um everyone knows that's a
passe" way of thinking No one thinks that way anymore And while I
wouldn't say that's the Floortime approach, I definitely—you know from
the materials—got the impression that could be the parent's fault Not the
autism [but the child not getting better]

The stakes are high Many parents' anxious feelings about parental responsibility

were intensified by a sense that the stakes were extremely high for their children S

described how she often felt like she was in survival mode during her earliest months

using Floortime She recalled the feeling "You're fighting for your child's life, because

it really does feel like life and death when you're talking about your child's

development" R said of the early experience "You know if you ever give in, your child

will never talk "

Some parents felt that reading the dramatic success stories about cured children

actually conveyed less hope than a sort of black and white message about the parent's

duty to save the child C recalled the pressure she felt

 So then you start reading the books about you know the children who
recover, so then you know you feel very hopeful and you feel an enormous
amount of pressure knowing there is a possibility and you have to work
really hard to make that happen urn and you don't know exactly what to
do (laughs)

M also remembered having desperate reactions to reading about "heroic mothers" who

"saved" their children in literature about autism and Floortime However, unlike C, M

described how the high stakes mentality actually fueled her motivation to do Floortime

She said "You keep thinking, Oh my God, I need to do this Without this my child is

doomed "

Time pressure Another factor that exacerbated most parents' stresses related to

parental responsibility was a persistent sense that a clock was ticking and that they

therefore needed to work as hard and as fast as possible to move their children along

These parents were aware of ideas about the importance of early intervention and the

significance of a child's limited developmental wmdow, which together led them to feel

like "everything matter[ed] so much, every moment matter[ed] so much " D recalled a

question she sometimes asked herself in the early stages "You know everybody's all

about early intervention you know and it's like, oh my God, did I just waste three months

in doing something with my child that really isn't going to work?" In retrospect, she was

critical of the alleged importance of intervening as much as possible during a child's

early years and grateful to Floortime for stressing quantity less than quality She said

about the emphasis on early intervention

Right, which by the way I think is bullshit I think, does every minute
count9 Yes, it does, but I think that it is the quality and not the quantity
And I think that's what, one of the things that um made me respect the
Floortime methodology so much
 100

Getting stuck is hard. Four parents talked about how difficult it was to

experience periods in which their children stopped making progress Interestingly, all

four parents described a feeling of being stuck along with the stuck child For instance, A

emphasized the pronoun "we" in statements like "We 're stuck You know, she's stuck in

this pattern, and we 're stuck here "

Whereas A and C had relatively easy experiences working with their children on

early Floortime milestones like engagement and joint attention, they struggled with more

advanced milestones like imaginative play or activities that more fully included the

parent's subjectivity C highlighted the frustration she felt when she and her child got

stuck early on

Although you know we could get joint attention if it was something he

was interested in—because he was into letters and numbers and um, and
that would be rewarding—getting the smiles and the feedback and you
know if he could engage well If it was that kind of thing Um, but it
would be frustrating not to get it to go beyond that to something more that
/ was interested in It felt like we were stuck there at that level for a really
long time We weren't able to move past it

A talked about how she and her daughter still get stuck, which she hypothesized is due in

part to her own limitations with quick and creative thinking She described episodes of

panic and tedium she endures during moments of feeling stuck

And now that she has moved up the ladder, I'm like, Oh no' What do I do
now*?' (laughs) Like I actually feel more puzzled sometimes now because
I keep feeling like I'm getting stuck So, I feel like looking back on our
development up to this point, the hardest, probably the hardest days for
me was she has a lot of motor planning and sequencing issues as well as
probably a lot of the kids do and she for a long stretch, she would get
stuck in like doing the same thing over and over and over and over
(laughs), and you know like she would always want to go over and sleep
in my bed, like that was her little play scenario—go to the brown bed' Go
to sleep' Sleep in the brown bed' And I was like, Oh my God' Like
literally how many times can we play sleeping in the brown bed, and how
many times can I be creative enough to vary it up and challenge her on
 some level? Like that part is hard1 That part is hard for me I feel like
the kind of creative part of constantly—I mean I can do it a few times—
but a thousand times having to come up with ok well, who's going to
come play m here with us? Or you know being conscious of what
language I'm using and if I'm varying my language and blah blah blah,
there's just that kind of the creative aspect and the constant thinking on
your feet—I think that those two pieces together, especially for a kid like
her who has a real difficult time kind of moving on to the next piece on
their own and needs a lot of facilitation and support for that, that's hard

Like C, A also spoke about frustration, but A linked the frustration to what she

perceived to be the symbolic significance of her child's interrupted momentum early on,

which included the reminder that her child had autism and contributed to preexisting

Her wanting to do the same thing over and over was kind of a reminder of
where she was at that time, and then my inability to come up with the
thousandth way to become creative m that pattern would frustrate me—
like oh no, now I'm not helping her either because I can't help her with
something else And then I would go to [our Floortime therapist] and he'd
be like, oh yeah, did you think about this, and it would seem like the
simplest thing, and I'd be like no, I can't believe I didn't think about that
Because I am hard on myself, so I would give myself a hard time, you
know, why didn't you come up with that yourself? You know, a bit of a
vicious cycle

Is this as good as it gets? Some parents elaborated on why moments of feeling

stuck produced feelings of panic For instance, D spoke about a common fear that a

pause in progress signified that the child had reached his or her highest potential

I think there is a constant anxiety of "Is this as good as it gets?" I mean I

think that for me personally, that was the most difficult part to deal with is
are we going to make more progress? Was today the most progress that
we are going to make?

A common reaction to the "Is this as good as it gets?" anxiety for a few parents was brief

emotional devastation, as they feared that their hopes and dreams for their respective

child were dashed or that the child was forever lost

 102

A roller coaster. Four participants described ways that their experiences with

Floortime were characterized by emotional ups and downs related to their children's

varying levels of progress J and A both used the term "roller coaster" to illustrate the

emotional volatility they underwent For A, the erratic shifts were most pronounced early

in the process of learning and using Floortime, and she touched on how impactful they

were on her self-concept and confidence m the model

I think, especially early on, I would go through—I like to classify it either

as a wave or a big roller coaster ride where you are kind of going up the
coaster and you're feeling pretty good and you hit that high and you're
like yes' I've got everything under control and this is working and I feel
like I know where I am at, and you know I feel like I've made the right
decisions and then suddenly, inevitably, (laughs) you start to go down the
hill again and you question a lot of things

She went on to emphasize how difficult it was to maintain perspective on her child's

progress amidst so much precariousness She explained how important it was to her

when other individuals, such as her spouse, witnessed the ups and downs and helped her

keep track of the big picture

In J's case, the internal turmoil was more unrelenting, as his emotional ups and

downs paralleled those of his child for years after starting the intervention

Uh, it's like a very bumpy ride, a very bumpy ride Very unpredictable
You think he is making progress You work very hard, and you get your
hopes up, one day my life will be normal, his life will be normal And
then something would happen and everything would come crashing down,
and then you would just lose it completely So, many many many
instances where we would play—I think he's making, we had a good time,
and then um then I would lose him, and I would cry Um, so it was very
um it was like life and death every day One moment you're living, one
moment you die One moment you know it's all sunny and bright, and
one moment it's totally dark So it was that intensely bumpy roller
coaster-type of life for a full three years
 103

Progress is rewarding. All participants emphasized the emotional rewards of

witnessing their children make progress as a result of using Floortime While most

parents evidenced their satisfaction with progress with examples of skill-building and

intellectual mastery, it was more common that they cited satisfaction with relational

gams, such as increased giggling, greater affection, and improvements m joint attention

Early progress is quick, elating, and reassuring Most parents spoke about how

quickly they noticed progress and how striking and sometimes pivotal the very earliest

signs of progress were They recalled an assortment of positive experiences during the

earliest months, such as relief and reassurance that they had chosen an effective

intervention for their child The first major motivating success for J's child took place in

a store, where J successfully initiated an impromptu game of peek-a-boo with his child

using the store's mirrors He remembered the confidence he felt after this first instance

of progress

I would pull him towards the mirror and we can see each other in the
mirror, so and he—I immediately saw that spark in his eyes He
immediately—his eyes lit up, and then I really got that back and forth,
back and forth, and I knew at that point that you know this is the way to
connect, um so that was a very um very revealing moment, and I would
say that it was the genesis of his recovery—that instant in Walmart I
knew the battle was won at that point If I could connect, then that's just
the thing that—everything else would fall in place, so I was very, very
excited

Another parent who recounted the reassuring and often thrilling aspects of early progress

was S, who emphasized the frequency of early developments She said "Literally every

day he was learning a new skill He was making progress in some way, shape, or form,

and it was a constant high It was awesome "

 Progress is more rewarding over time For some parents, progress was more

rewarding over time, after milestones had been achieved and the child's unique

personality had come more fully into view As a parent who was particularly hard on

herself early on and often felt like she could not shed the therapist role long enough to

appreciate her child, A found great relief as time went on and as her child's

improvements were more dramatic She depicted a process of coming to enjoy her time

with her child more once she had relaxed into the model somewhat and once her child

had achieved communication milestones and was showing more of her unique

personality A said

Now that I am more confident in what I am doing and she is making

progress you know, now I think and you know I still go through my ways,
but when we are having a good time, they are even more rewarding Does
that make sense9 Because it's like they are so much richer and I feel like
some of my worry has been put to rest because she is making progress, so
you know it's nice to just see her grow and develop and to be able to have
some moments when I am purely just you know in the moment with her
and be like whoa, this is totally awesome, you are one funny kid (laughs),
you know, and I am really enjoying you right now This is so great

Finding the child Similar to A, many parents spoke positively about a gradual

process of finding or rediscovering a child who they felt had been lost R recalled what it

was like to witness her child "come to life"

Well, that was overwhelming to me I just thought, it should have been

like this It was always like this with every child I knew And with this
kid at two and a half years old, he's finally getting lively, he's finally
getting excited to see his mommy, he's finally getting excited to see his
daddy come from work It was like, this is him' This is the son he should
have always been Here he is' It is him emerging and his personality
emerging It's him growing into the person he should be It's kind of like
do you worry about looking back or do you go, this it it' This is the little
boy he should have always been And we're getting him He's here He's
coming
 105

Progress motivates you to keep going Many parents claimed that progress was

an important motivator throughout the entire course of intervention and stressed that it

was often responsible for propelling them to do more Floortime despite bad moods,

fatigue, and other possible emotional impediments to the work M declared "Floortime

is kind of addictive The more you do it, the more you want to do it" She observed that

her son was more regulated when she did Floortime with him on a more regular basis,

and when he was more regulated, Floortime felt more natural and automatic to M She

added

And now some evenings when I crash and I'm dead tired, and thinking
there's no way I can do anything—there's nothing in me left, and I want to
crash in front of the TV he would drag me out to get into the trampoline
and play with him, you know? So and then somehow I find the energy,
and then you're both doing that back and forth Once you start, if you just
keep going for a while, you cannot stop Like, I can't imagine ever
stopping the Floortime

Oftentimes, the relational rewards were what made the hard work and perseverance

demanded by Floortime feel worthwhile B described how gratifying it is to observe her

son make progress every day, highlighting how especially rewarding it is when he

responds to her affectionately

You just go, oh my gosh, this is so cool' It is just—that is a good feeling

when something comes out of his mouth that is totally spontaneous or he
tells me he loves me without being prompted Um, it's just incredible
And so yeah, it's an amazing feeling And it's just like, it's worth all the
work

Negotiating multiple roles. Six parents described challenges related to

negotiating multiple roles and responsibilities Some parents who worked outside the

home talked about the need to multi-task and prioritize in order to successfully balance

their careers with responsibilities at home Some parents who had more than one child
talked about needing to find ways to divide their attention and distribute it among

multiple children The most common subject was difficulty related to balancing the roles

of being both parent and therapist to a child with an ASD

Frustration with not just being mom When D's efforts to obtain financial

assistance and support services from her local school district were met with major

resistance, she took matters into her own hands and established an elaborate home-based

program for her son, which she and her husband paid for out of pocket The lack of

support meant that D was forced to hire and coordmate an entire team of clinicians,

arrange and pay for the team's supplemental Floortime training, and plan treatment

goals—all while serving as her son's primary Floortime therapist, mother to both of her

children, and partner to her spouse She recalled her fleeting irritation with having to be

both her child's mother and his program manager

I knew we were doing the right thing, but at other times too it was very
frustrating because it was like I was the CEO of my child You know,
oftentimes I felt more like a CEO than I did a parent You know urn and
so I think that part of it was frustrating because there were a lot of times I
just wanted to be mom I didn't want to have to be the CEO, I didn't want
to have to do the scheduling and the billing and the charting and the
tracking and you know I remember one night, I was laying in bed and I
looked at my husband and said "Can we hire a secretary to do this 9 " and
he said we can't afford it

As a mother who reported that her preexisting parenting values and style meshed

extremely well with Floortime, D voiced relatively few complaints about her use of the

model, however, she stated that it was "disappointing when you're doing it because you

have to and not because it's a choice " A also grappled with how to manage multiple

roles when she often just wanted to focus on being her child's mother She talked about

how readily the line between roles blurred and overlapped

 107

It is hard to kind of take off the therapist hat and just be a mom Like I
would give almost anything for having like those two and a half years of
bliss when we were just clueless, because I could just be her mom I could
just enjoy her for who she is and you know just have fun with her and not
be worried about oh my God' Did you see she just did this*7 Or you
know, but now I don't feel like I have that anymore Because again
because of who I am or whatever, I feel like as much as I try to just sit
back and enjoy her, I am still analyzing everything constantly' And that's
exhausting in and of itself, just the analyzing, not to mention then the okay
I just analyzed that, now shit I've got to go in and do something about it
now

Isolating. Seven parents described their expenences with Floortime as isolating

at times

Your own autistic world Parents commonly talked about ways that their worlds

came to feel insular due to the amount of time they spent focused on Floortime, often

within the confines of their homes Some parents added that their children's easily

dysregulated sensory systems rendered outings nearly impossible at first S, a mother

who "hitch[ed] her wagon to Floortime" and fully immersed herself in the intervention

early on, described the result "It's almost like you're living in your own autistic world "

Even as time went on, or in-between Floortime sessions, some parents found it difficult to

get out to go to movies, grocery shop, or participate in other activities outside the home

on their own time R talked about how difficult it was to find people to care for her child

in her absence due to her child's limited tolerance for less familiar caregivers, such as

grandparents and other family members She said "You just—you begin to get isolated

Your relationship with [your child] opens up, but you 're isolated "

People don't get it Another aspect of isolation described by many parents was a

pervasive sense of being misunderstood by others, which left parents feeling alienated,

depressed, and sometimes envious of others' good fortune B and R both used the phrase
"people don't get it" to describe the sentiment A talked about the disconnect she

experiences with friends who do not use Floortime with their autistic children, or with

other friends whose children are not on the spectrum

It can be a very lonely journey at times, and you know a lot of people—
even your friends with other kids—they don't necessarily get it, because
they're dealing with, oh so and so won't eat spaghetti and meatballs And
I'm like, oh my God, if that was my only problem, I'd be so happy'
(laughs) You know so but you can't say that You know so it's just hard
You want there to be someone out there who knows really what you're
going through

C talked about feeling especially isolated early on when she experienced

frustration with working so hard at things a mother of a typically developing child would

take for granted She recalled how painful it was to witness her baby show no interest in

playing, which she felt should be one of the most natural instincts of a baby his age,

meanwhile, she worked steadfastly and often fruitlessly at engaging him in play

activities She recalled "I mean my husband you know he gets it, but there really wasn't

anyone else we could talk about it with who understood what it was like—to have to

work so hard at play "

Tolerating ambiguity. Four parents talked about the importance of being able to

tolerate ambiguity and uncertainty while doing Floortime Of these parents, two said

they struggled greatly with ambiguity, and the other two hypothesized that they

transitioned smoothly to Floortime due to their preexisting comfort with not knowing or

having limited data Floortime was seen as ambiguous mainly because of its absence of

the clear steps and goals that are common features of behavioral programs Some parents

also focused on how murky and unidentifiable progress sometimes was, which made it

difficult for them to locate themselves and their children in the big picture
 109

Exhausting. Four participants described features of Floortime that were

exhausting—both physically and mentally Early on, some parents spent their free time

reading and learning as much about the model as possible, sometimes surfing the internet

into the wee hours of the night R talked about how physically draining it was to get on

the floor and follow her child's lead Some linked their fatigue to the 24/7 nature of their

programs Some discussed how Floortime came to pervade almost all domains of their

life, thereby sapping time and energy they would otherwise have for themselves and other

activities For instance, A talked about how tiring the constant analysis of her daughter

was and how hard it was to turn off the analyzing function

Becomes a lifestyle. All detailed ways that Floortime eventually became a way of

life R said "But overall Floortime to me is just part of our life now, so it's not work as

much as it's just part of our lives " Some parents exemplified the "Floortime

everywhere, all the time" ethos D talked about how Floortime activities easily fit into

daily routines

Well and I think one of the things is that it can fit—I mean when you're
doing the program, it can fit very naturally into your lifestyle if you let it
I mean everything you do can be a learning experience It can be very
much a, you can fit it into every aspect of your life if you know how to do
the program You can fit it into every aspect of what it is you' re doing It
doesn't just simply have to be something where you're you know sitting at
a table for 40 hours a week I mean everything from taking a shower to
brushing your teeth to taking a ride in the car, you know having
conversations about you know what are you seeing out the window, you
know silly things like why is the dog barking to looking at the birds going
out of the trees or you know I mean everything that is happening in your
world at any given moment you can use that to as a teachable moment

S and some other parents described a process of prioritizing Floortime so much that it

dominated their experiences around the clock

 110

It's a 24/7 operation Everything else is secondary DIR is our number

one first priority with our child, so our schedules are really around that
Everything is based around that So really, when I say it is a lifestyle, like
when we go out, we are doing DIR, or when we are in the store, we are
doing it It is a way of relating to your child all of the time And I am
with him most of the time

J talked about how everything seemed to revolve around Floortime for about three

years "There's no other thought in your mind There is nothing else on your horizon

It's just one thing "

Some parents who talked about the lifestyle shift did not report going to the same

type of 24/7 extreme that D, S, and J depicted, but they instead shared that their

experiences felt more like a "lifestyle" after they had absorbed Floortime concepts and

felt like the work was more infused into daily activities

// gets easier. A related theme was that all eight parents touched on ways that

Floortime became easier for them over time The most common theme was that

facilitating the model felt more natural to them as they adopted it as more of a way of

life When C began to think of Floortime as more of a choice than an obligation, she was

able to be more forgiving of herself, which had a positive effect on her ability to be

increasingly spontaneous, playful, and able to laugh off hard moments She reflected on

the transition to Floortime as a way of life

Um there was less pressure than the actual having to [do it early on] You
know you can Floortime while your kid's in the bathtub or you know
while you're making lunch or while you're in the car Um and that took a
lot of the pressure off for me, just thinking of it in that way—thinking of it
more as a way of interacting with my child rather than something I had to
do and I had to do right—just thinking of it more as an attitude or an
approach to parenting
 Ill

R talked about how much more naturally the model came to her once she had a

good grasp of the fundamentals, which she believed could only be mastered by

immersing oneself in the work

I think it's very hard when you first learn but then when you see it there—
when you understand the eye contact that needs to be made, you
understand the touching and the happiness and energy that you two
together whoever's doing Floortime with him, the energy Those children
feel that energy—the energy from themselves, they understand the energy
from you, and for once, you're down on their level You're doing
something they like to do You know it's it's you know I just think it's
something you can't read from a book You know, you just have to see it

A was one of several parents who spoke about Floortime not feeling like work

after a child made enough progress early on to allow them to engage in more mutually

rewarding reciprocal interactions She also reflected on how her own personal process of

loosening her standards for herself permitted her to appreciate her daughter more fully

and to feel like a typical mother more often, which in turn alleviated the sense that

Floortime was a burden She recalled

And for me now, you know what, it's not work' It is work, but I don't feel like I
mentally look at it that way I look at it like, wow' This is our time to go and
have fun together, because it's turning out now that she is able to engage more
easily and stay more regulated that wow, we actually get somewhere that is
really—I mean the stuff that she comes up with is hysterical, and if you really are
just following her lead and facilitating that, you know it's really amazing what
she comes up with So for me, because I think of who I am, I am able now at
being better at really valuing where she is at and how far she has come, even
though I know in the back of my mind that she still has a long ways to go

For some parents, their growing ease with the model paralleled their children's

progress in areas such as improved engagement and sensory regulation Some described

feeling less insular and isolated over time, and some hit on the theme that their own

worlds opened up as their children's worlds opened up, allowing parents to reengage in

activities they had previously enjoyed, relinquish some other sacrifices they made early
 112

on, and essentially feel more like themselves S said "Our world has started to open

up—that we are able to do more, more enriching, more imaginative, his imagination is

exploding Um, you—so I think little by little our world is opening up too " R recalled

how Floortime initially expanded the infant-parent relationship in the confines of the

home and, as her child became more regulated, gave her family the tools necessary to

participate in activities outside of the home She said "You just—you begin to get

isolated Your relationship with them opens up, but you 're isolated [And then Floortime

eventually] opens up the world of the family to be able to do things "

M described a slow process of feeling less plagued by guilt as she has come to

better accept her son's differences As a result, she believes she can more readily

experience a range of emotions and better appreciate her child She said "You know, it's

not that the guilt is completely gone, it's just a lot of other forms of emotions have taken

up my brain space "

Some aspects get harder. Two parents who described an overall process of

Floortime getting easier over time also mentioned ways that some aspects got harder over

time D described a fairly smooth early period usmg the model during which her son

moved successfully through the first four developmental milestones, however, when it

came time to work with him on imaginary play, she found herself feeling disappointed

and a bit helpless She remembered thinking to herself "He was making so much

progress You know he could do everything else but, my God, why can't this kid have an

imagination9" In retrospect, she thought the Floortime literature stressed the importance

of imagination so emphatically that her expectations for her son's imaginary play

sometimes exceeded his capacities, leading her to often feel dejected Ultimately, she
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found it was more useful to turn away from the imaginary play at times to instead work

on her son's strengths Like D, A felt that the earlier milestones were more intuitive and

required less energy and quick, creative thinking at first Unlike D, however, A

wondered if imaginary play was a struggle for her because of her own minor limitations

with imaginative thinking, as well as features of her own personality, such as

perfectionism

FT standards are too high. Some parents commented on implicit and explicit

messages they internalized about a type of endorsement of "very high standards" for

Floortime parents As a result, these parents applied tremendous pressure on themselves,

which often left them feeling guilt-ridden and inadequate M described a mentality that

seemed to insist that a parent "drop everything" in order to sufficiently support a child C

remembered how other Floortime parents sometimes promoted all-or-nothing notions

about the virtues of the model, such as a "thought that there's a right way to do

Floortime" or a communication that "if you're not doing Floortime, it's because you want

someone else to take care of your child " A talked about messages that made Floortime

sound easy, when in reality, it was incredibly challenging for her at times Interestingly,

of the parents who were critical of what they considered to be lofty expectations, none

questioned the value and effectiveness of a primary parent staying home and devoting

large quantities of time and attention to a child, rather, they focused on impracticality and

the emotional toll of absorbing the messages

M, who is her family's sole wage earner and who fills many of her free waking

hours doing Floortime with her son, wondered aloud why the standards as she perceives

them must be so high, particularly for mothers

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Moms have got to do what moms have got to do Why are we held up to a
much higher ideal than what we're supposed to do 9 Is feeding a family no
longer an (inaudible), you know9 So I mean that's only part that I find
like, that bugs me They don't expect that someone can just give up
everything and become Believe me, any guilt that you can assign onto us
moms, adding on to us moms, it is already there without any help from
you Heaven forbid you are a two working family I know [Stanley
Greenspan is] right and I know what he's saying makes sense, but it's just
not fair It's not possible for some of us, you know9

Early on, M's guilt about not staying home to facilitate a more intensive program for her

child drove her to consider quitting, which ended up not being a viable option It took

many months for her guilt to reach more tolerable levels

The various perceived high standards seemed particularly impactful on parents

who were vulnerable to perfectionism A recalled feeling overwhelmed, guilty, and

frustrated with herself for not being perfect

I think reading the Greenspan book, I would get [perfectionistic] because I

want to do everything 110% But then I get really frustrated with myself
when I can't do that, and then I feel guilty and I feel like I'm doing it the
wrong way and I get down on myself and blah blah blah, so the Greenspan
books are so overwhelming in the sense that it's like eight to 10 20-minute
sessions a day, and you're hke Oh my God' How in the world am I—you
know I have another child and I have a husband who is always gone for
work—you know by that time I'm sure we were already doing a gluten-
free blah blah blah You know I put her on a special diet I spend half my
life cooking You know, I honestly I was like How am I going to do
that 9 '

There were times when A felt like the Floortime literature advocated that parents eschew

their own negative emotional reactions without sensitively reflecting how difficult it is

for parents to put their own feelings aside Instead, she was left feeling not only guilty,

but also abandoned and lacking sufficient direction about how to cope and what to do

next She said

I think that the way—with all respect to Stanley Greenspan—but I um do

feel like sometimes he is just so, ah, just get yourself off the couch and do
 115

it kind of thing So, I'm like oh my God, it's hard to get myself off the
couch some days, you know this is overwhelming' Where do I start?
What do I do7 How do I do this9 I mean this all sounds great on paper,
but here I have a kid who won't do anything but stare out the window you
know and suck on her fingers Am I supposed to stare out the window and
suck on my fingers with her9 Like okay' I guess I can do that you know
but what—and it's hard as the parent, from my experience, to not feel, to
not be m a constant state of panic about your child's development, so the
books are really—and every consultant, every video, every whatever
really encourages you to kind of put that to the side and just be in the
moment and be present, but as the parent, it's incredibly hard to do that

Two parents talked about pressures they felt to act like someone other than who

they were when doing Floortime For example, they felt that Floortime was best suited to

people with big "clown"-hke personalities or people who could pretend to be more

animated and outgoing C described the pressures as she experienced them during a

coaching session

You know, I think it's almost implicit Um, you know because it's you
know you need to do this, you need to act this way You know it's very—
it was very much this therapy that they suggested it was all on us you
know and on how we acted But I'm not very extroverted I'm more
introverted So, of course that's not the way to be when you're doing
Floortime (laughs) Um, you know, I'm trying to remember what his
phrasing was—like 'energize' or I wasn't lively enough was the big—one
of the big problems um for working with my child You know I needed to
be higher energy, which again kind of was against my just nature, um so
that was also very (laughs) pressure was to know okay I have to act like
someone I'm not in order to best help my son Yeah it's for your child to
get better, you need to act different than how you are

C also cited another attitude that she considered to be prevalent and problematic

in the Floortime commumty a mindset of unconditional acceptance of a child's autism

Like many parents, C actually struggled immensely with her child's diagnosis and

behaviors, especially early on She remembered ultimately questioning the goodness of

her fit with the model when she could not shed her negative reactions
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I was so down about [the autism], so overwhelmed by it, angry about it—
you know reading about some of the other people who did FT, like on the
internet, they just seemed so much more accepting than I was—you know,
you have to love your child exactly the way they are And I didn't'
(laughs) Um, so it—that was my problem Not only can I not make my
child better because I'm not outgoing enough or not energized enough, but
I don't accept him the way he is' (laughs) So, you know you think, is
this the right fit for me, this kind of therapy'?

The type ofperson you are can impact experience. Seven parents described

ways that who they were when they started Floortime impacted their experiences with the

model For instance, parents who were prone to perfectionism described frequent doubts

and a heightened vulnerability to criticism Parents with high standards for themselves

also described feeling self conscious and embarrassed more often than others Some

parents who described themselves as "doers" and preferred being out and about to being

home struggled with having to remain home and stay so focused on their children much

of the time B and A were the types of parents who would rather have gone on outings

with their kids than stay inside, so they had to practice restraint and focus On the other

hand, Floortime was not always easy for people who were not "doers" either The best

example was J, a studious, serious man who was an avid reader of religious and

philosophical texts prior to his child's diagnosis He recalled why playing was

sometimes challenging "I am really more of a theoretical person and an idealistic person,

so actually doing it was tough " Some parents started Flootime without a well-developed

capacity for imaginative play, which affected their abilities to intervene effectively and

impaired their self-concepts A frequently felt stumped and dejected as a result of not

knowing how to extend episodes of pretend play

It was also common for a parent to talk about how he or she was forced to be

different than his or her true self C thought Floortime was better suited to extroverted
 117

types who can act like a "clown" or be an "actress" better than she could She described

how she reacted to being coached to be livelier than she naturally was "You do feel

fake, not genuine, so that made me question myself as well You know, this isn't me "

Shifting mental states can impact experience. Fluctuations in mood also

influenced five parents' experiences with Floortime—namely, their feelings about the

model and their abilities to use it effectively

Parents' emotions impact child A bad mood could, for example, interfere with a

parent's ability to be emotionally present with a child Conversely, a particularly good

mood could facilitate closeness and infuse the work with creativity and vitality Many

parents talked about how sensitive they were to their children's shifting moods and

behaviors, and they also stressed how attuned their children were to them, which seemed

to render mood swings potentially hazardous to the work A talked about why she thinks

it is important to be genuine with a child on the autism spectrum She said

It is key about the child being sensitive [My child] is so sensitive, and
my opinion is that any parent who thinks that their child is not sensitive is
clueless (laughs), because it plays a major role—like how you are feeling
plays a major role

A added that she sometimes felt like the Floortime literature failed to attend to the role of

moods and failed to set realistic expectations for the emotional availability of parents,

who naturally experience changes in mental state She said

I am a huge believer—even just with me and my mood shifts or whatever

that she definitely responds to that, so it again that is one of the things that
is challenging about the Floortime is there is this kind of core piece about
the parent and the child, which I think is an essential piece of the model,
but there can be some flaws in that—or life happens'

Mood shifts are most prevalent early on Negative emotional states were

especially common during the early stages, when parents were still reconciling diagnoses
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Common emotional reactions that got in the way of the work included feelings of

overwhelm, panic, and guilt M talked about how she initially felt "all-powerful" and

ultimately responsible for not preventing her child from being autistic She concluded

that "guilt is toxic" and revealed that it pervaded her sense of her self and entered her

interactions with her child

Faking it or doing it anyway M and most other parents who talked about mood

fluctuations stated that they still managed to do the work, despite not feeling up to it,

however, they sometimes felt disingenuous, uninspired, or less useful to their children C

recalled

Yeah, I mean I would still get on the floor, and I would still make myself
do it, but um you know it's when I was feeling like that, I don't think I
was being effective (laughs) when I was—you know when he didn't
respond the way I was hoping he would, you know it was hard not to be
angry and then of course once I would get angry, well then of course he
was not going to respond So, it was kind of a spiral

When M is especially tired or moody, she sometimes "fakes it 'til [she] makes i t " Like

some other parents, she talked about how Floortime itself can be energizing and actually

elicit a good mood She elaborated

I have learned to put on affect like makeup You know, I put on high
energy when I'm not feeling it And it starts an infectious cycle that you
know that really um kind of I don't know it kind of changes the responses
and you know the yeah, my low energy would sometimes affect him And
in the same way, my high energy can change his mood and my being
happy changes his mood dramatically I fake being happy and I pretend
to be high energy, and then before you know it, I feel high energy

Coping. Themes related to how parents coped with doing Floortime are

described in this section

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Putting child's needs above own. All eight parents described ways that they prioritized

their child's emotions and needs over their own while using Floortime R described her

commitment to the goal of helping her child

That was extreme determination for me, and I promised I would not give up for
one minute And I didn't give up [It's hard at first but] when you know that
your child isn't going to speak a word until you change your style of parenting to
Floortime—if you accept that and you know that and you're committed to helping
your child fight—you'll do it

Many parents reiterated R's sentiments about the immense determination and

perseverance that were required to choose Floortime and stick with it They stressed the

large amounts of patience, energy, and tolerance of ambiguity required by the model, as

well as other personal sacrifices, such as significant lifestyle changes

Putting feelings to the side Parents also commonly described ways that personal

sacrifices helped them cope with troubling emotions during difficult times Several

parents talked about how they regularly put their own feelings to the side in order to keep

at Floortime Around the time that her child was diagnosed, R found herself plagued

with worries but had to consciously decide to set aside her concerns in order to help her

child She advised other parents to adopt the mindset she assumed around the time of

diagnosis

What parents have to understand that second is that you can either worry about
the past, worry about the future, or get some help right now in the present You
have to hit the ground running And your emotions are one thing, but your child
speaking is another And so you have to mobilize every bit of energy you have
and every resource you have

Early on, A reacted to her child's self-stimulating behaviors with intense dread

and fear, as she experienced the behaviors as symbolic reminders that her child in fact

had autism, a reality she could not easily accept In these moments, her instinct was to
recoil and deny the reality of her child's diagnosis At times, her worries actually

enveloped her and either caused her to physically withdraw from her child or prevented

her from being as effective at Floortime as she had the potential to be She spoke of a

revelatory moment when a relative advised her, "There are some days that you just have

to hand it over to God " A recalled the usefulness of that advice and the helpfulness of

prayer, in general, in terms of helping her accept her child's diagnosis, maintain her

mental health, and mobilize to do the work She said

You know that was actually really helpful to me because I think I am

always pressuring myself, you know you gotta go go go, but you break at
some point, right, m that process and then you're no good to anybody I
found that the only way I could really do it effectively is if I was able to
put [the negative feelings, like fear and anger] to the side and be like, you
know what, she does have these issues and this is really hard and I wish to
God she didn't have these issues, but you know what9 She's never going
to not have these issues if you just keep sitting on the couch

Some parents discussed a sort of contagiousness of moods that occurred during

Floortime activities, in which the parent and the child readily took on each other's mental

states For instance, if J's son was in a bad mood, J might become a bit depressed, which

in turn impacted his ability to play J recalled the considerable energy and effort it took

to contain his bad moods

So it was um you are kind of conserving all your energy for these sessions
Um, so and that includes physical and well as mental and psychological
energy so that even if you are in a depression or a bad mood, you should
have the strength to put that aside and actually do it with him Um, so so I
would say it had an impact but it took quite a lot of effort actually to
overcome that and consciously put aside the negative feelings and um all
the counterproductive thoughts It requires a lot of energy for sure A
toughness

Parenting instinct takes over Putting the child's needs above the parent's own

was not always a difficult task, as some parents recalled that their parenting instincts
frequently took over and their immense love for their children ended up serving a sort of

palliative function For instance, being a constitutionally quiet and serious man, J felt

that the animation called for by Floortime did not always come naturally to him,

however, he did not find it challenging to put some aspects of his own personality to the

side, because his instinct to help his child was so powerful He remembered

I guess the instinct of the parent is too powerful That's what drives you
to do things Um, basically I had to do anything to get my son to connect
with me, so um I had I basically had to throw away any inhibitions in that
respect That was very clear to me Anything to get him to connect I
would do is what my decision was, you know it was not a conscious
decision but that's exactly what you know I would take him to the park,
put him on a swing, he wouldn't know where he is, now I need to get him
to interact with me, so I have to become a clown If I become a clown
(unintelligible word) that's fine, that's exactly what I will do I may look
funny to all the other parents who are sitting on the benches and chatting,
but that's fine with me I would do anything to get his glance Um, get
him to look in my eye, look at me, pay attention So, so yeah Um, so the
driving force was too high to keep any inhibitions really You have to
drop all that and just get down and do it Um, so so it was different from
what I was, I had to do things that were not myself, but it wasn't like I had
difficulty doing that either

Using others to cope. All parents emphasized the importance of relying on others

for help They named a variety of different sources of support, including spouses, family

members, friends, individual therapist, Floortime therapists, other Floortime parents, and

other parents of children with ASDs Many parents concluded that they would not have

been able to maintain a Floortime program had it not been for the support of others

Ways that parents used and wanted support from others will be detailed further in the

results section for Cluster 5

Using self/mind to cope Four parents talked about how they made use of

themselves—namely, their own minds—to manage difficult situations and feelings

 Self-reflection and self-coaching A number of parents regularly referred to

instances in which they used self-reflection and self-coaching to reassure themselves It

was also common for parents to internalize the coaching function of their Floortime

therapists so that, over time, they were able to coach themselves Some needed to

regularly remind themselves of why they chose Floortime to begin with or to be easier on

themselves A talked at length about instances of feeling discouraged, and she recalled

numerous times when she had to step back to reflect on the big picture and talk herself

back into persevering R gave an example of the way she talked herself through episodes

of frustration, which she speculated set her apart from other parents of typically

developing children

And you have to recognize—sometimes you have to say out loud just to
quell your frustration—if I don't help you to learn this, you'll never learn
it And then you will remind yourself by hearing it out loud that I am
going to help my child to learn this So, it's stuff like that that other
parents don't stand there and do

A spoke directly to why she thinks it is crucial for a Floortime parent to have a self-

refiective capacity

I think it's really important to be a little more self aware and just you
know try—just try your best with what you have that day, if that makes
sense And you know it's true, everyone goes through their cycles and has
good days or bad days, and I think it's important to go, you know what,
I'm not feeling my best today and I have a feeling this is going to be a
little rough today and you know you can even say that to the child, you
know I've done that before I've done that with my [job], where I come in
and say you know what I'm not feeling great, I'm going to do my best, but
you know you're just going to have to be a bit more patient with me today
(laughs) and I find that to be helpful because then at least you are honest
and you can kind of take it from there and in my experience, for me, I feel
like the more self aware I am and the more I am like, A, this is going to be
tough, you know, and if I just kind of ease into it, before I know it—
especially now—I'll be like wow' Look at this' And my mood will have
changed because like that's rewarding right9 You know suddenly I'll be
 like wow' I forgot about whatever I was upset about and here we are
playing with x and she's doing really great today

Meaning-making Some parents relied on their unique belief systems during

periods of distress For example, prayer and faith were cited as useful coping

mechanisms J, a father who described feeling deeply unsettled by his child's diagnosis,

discussed how he derived comfort from making meaning out of his situation He

wondered if God was somehow teaching him cntical life lessons by introducing him to

autism and Floortime He remembered how he thought God used his child to pull him

out of his own autistic-like state in order to show him the importance of human

connection

I was deeply spiritual so it was—my thought was God is doing DIR with
me In a sense, you know I have been autistic You know I am lost in my
own world, um now God has to do something with me, so he he chose for
me the most um um um I guess um the the lure um that would pull me out
of that, and this happened to be that you know my son happened to be
that basically Um, so 11 don't know if I'm making sense but you know
that's how I felt I feel everyone of us is autistic in that sense that we are
kind of lost in our own world, our own thoughts, our own um musings and
um our own plans, and there is a big big big wide world out there which
we're not aware of, and this to me was like that

When asked about the result of his unique form of sense-making, J answered "It was

very, very comforting "

Practical adaptations. It was common for parents to cope with the various

logistical challenges and negative emotional reactions related to Floortime and raising a

child with autism, in general, by making practical changes in their lives Six parents

discussed practical adaptations they made to their routines For instance, some parents

changed their work schedules S, R, and A either stopped working or gave up their
careers entirely Some families altered their homes by adding playrooms and other

features to accommodate Floortime-related activities, such as occupational therapy

Sometimes, parents added practical adaptations to the structures of their Floortime

programs For example, some parents who found that they could easily become

overwhelmed by the scope of Floortime found it useful to build in small, attainable goals

for themselves Similarly, D decided to be flexible with her child's goals, when her son

struggled with pretend play, for example, she found that changing course and redirecting

him to activities that suited his strengths was helpful

Self-care Some parents adopted regular self-care practices into their busy

schedules, such as journahng, pampering themselves, and spending time with close

friends B described her ultimate version of self-care, which entailed hiring a hve-m

childcare provider as a stress-relieving measure D reserved one day per month for

taking care of only herself Some parents' versions of self-care were quite subtle in

comparison For instance, A talked about how household chores offered her some respite

from the hard work of doing Floortime with her child Without taking care of herself in

this unexpected way, she felt like it was difficult to maintain clear lines between her

various roles She explained

I still find that I have to do something for myself, if that makes sense, you
know I have to either clean up the kitchen or do something before I can
like say okay that part is done, the kitchen stuff is over, now I can go and
do what I need to do with her, and kind of separate it all out, because it
can get all jumbled together, and that becomes very overwhelming

Withdrawal and denial When especially overwhelmed or unhappy, two of the

parents found themselves using withdrawal or denial to cope, particularly in the

beginning As a consequence, there were times when they did less Floortime with their
children than other times A, a mother who had a hard time accepting her child's

diagnosis, was reminded of times early on when she sometimes used the need to do

research to justify not directly intervening with her child She explained her

rationalization and described a repetitive pattern of leaving and returning to the work

I think for me it's always a combination, especially in the earlier years, I

would maybe go through one day of being weepy, sad, depressed and then
moving into okay, you've got to do something about this, so my doing
something about it would be gathering information, so instead of sitting
there and really interacting with her, I'd be in the same room with her, but
I'd be reading the Greenspan book, you know instead of waiting until she
was asleep or whatever, I would be like, okay, well, I'm still using my
time wisely because I'm learning, you know (laughs) but I'm still not
really doing anything So, it really took a lot for me and even still there
are still days

Similar to A, B's negative emotional reactions sometimes triggered an instinct to

withdraw and regroup She remembered

Yeah, when I was stressed out and stuff, I mean I usually have had help, so if I
couldn't handle it or needed to have my mind elsewhere or whatever and I
couldn't deal with it, I wouldn't do it That's not the case now because I'm really
focusing on my child, but in the past it was very—and especially in the beginning
where it was just too much, it was too much—I would just back away from it and
let my nanny do it or you know my help do it or whatever

A note on parent responses. The section of the interviews that focused on the

process of using Floortime included some of the most specific questions about emotional

experiences, which are primarily summarized in the Cluster 2 results During interviews,

it was observed that some parents spoke more freely about emotional material than other

parents Parents who reported more challenging transitions to the model seemed to more

openly and frequently express strong emotional experiences Possible explanations for

this observation are described in the Discussion chapter

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Cluster 3: Effects of Floortime

Themes about Floortime's effects on parents are listed in Table 7 and expanded

upon thereafter

Table 7

Superordinate Themes for Cluster 3 Effects of Floortime

Superordinate Themes

Intrapersonal transformation
Interpersonal transformation
Parent-child relationship improved

Few changes when already a good fit for FT

Intrapersonal transformation. All parents talked about ways they felt changed as

a result of using Floortime Most commonly, parents described transformations in the

ways they thought about themselves, the world, and other people In some cases, the

overall personal transformations were remarkable For example, J depicted a global

transformation of his worldview Another set of parents felt less dramatically changed on

the whole but were confident that specific, isolated personality features changed Some

felt like they came to be truer to their genuine selves

Perspectives and priorities change Parents regularly reported ways that their

perspectives and priorities changed S recalled how she was engaged in numerous

activities and interests prior to learning that her child had an ASD, but her focus

narrowed so dramatically when she started intervening that she was left with little time to

read for fun or pursue other ambitions She said

So, when [the diagnosis] came down, we really had only one priority and
it's to heal my child—to maximize his potential Whatever that is—to
maximize his potential Things I used to worry about [went] out the
window Everything really gets put in perspective
The shift required S to adopt a "whole different way of being " For example, whereas

she once enjoyed pampering herself with makeup and manicures, she came to consider

those pursuits "superficial" D also stressed that autism and Floortime "teach you to

prioritize " Like any parent, she once quibbled with her child over minor things,

however, she is now less likely to argue with him about his wish to wear shorts on cold

days, for example R talked about how she came to worry less about small things and

focused her concerns on her family life She said "There's a lot of situations in this

world that used to drive me crazy I tell you what, it re-prioritizes everything, because

you just don't care what goes on up and down the street"

Thinks differently about human existence and purpose Some of the more

dramatic examples of perspective shifts involved large-scale changes to the ways people

viewed existence and life purpose For instance, R talked about how her experiences

with Floortime changed the way she thinks about human potential Prior to using the

model, she questioned whether she could do it, and she was not always certain that her

child would get better As a result of their successes, she now believes that "anything is

possible "

Floortime revolutionized J's ideas about humanity—namely, ideas about human

intelligence and the significance of human connection He recalled

One thing that really got shattered was the idea that intellect is what is
human We are human because of our intellect is what I was thinking at
one point Now that was completely shattered and I know what a human
being is We are human because we connect with others So that was also
profound change I would say—the so called intellect and intellectual
brilliance is not the only expression of our humanity
He went on to consider how influential Floortime's emphasis on the role of emotion and

connection in learning was on what he now considers to be meaningful in life He

reflected on how much more he now appreciates the small things in life as a result

I figured out basically that emotion is actually at the basis of all learning
and that's what really makes us capable of learning, and that is what is
closer to our humanity, and also the fact that we all learn because we
interact You know the baby learns sights and smells and everything
because it plays with its caregivers So learning actually is that, it's much
more that is the backdrop upon which all the other learning actually
happens—that was also new to me and changed my perception and my
outlook So, um when I see a baby smile, I see the tremendous amount of
work that goes behind that smile Um I see the work of God behind that
um it's very profound and I guess I really I am able to enjoy the small
things like that at a very deep level, like you can't take it for granted is
what I found out A baby smiling is not something that just happens
There is a lot of work behind that Um a confident youngster is not a
random happening It is actually because of the all the development that
has gone on before that and all the care that that youngster received as a
child there is so much work of mom and dad behind that, so all those
things actually flash in your mind when you see kids um and so I basically
stopped taking things for granted and when you see good things, you
actually stop and appreciate them Um because it could have been a lot
different So, I guess you slow down in your life a lot

Like J, B and A also connected their greater appreciations for the little things in

life to Floortime Both described themselves as being active types who liked to be

constantly on the go before starting Floortime B thought the model taught her to slow

down a bit, and A thought it made her more "settled "

More jaded In two cases, parents complained that they came to feel less

optimistic or less naive in certain ways due to the challenges of parenting a child with

autism and managing a treatment program Whereas A was "the eternal optimist" before

the diagnosis and prior to using Floortime, she now grapples with more anger and rage J

was also much more optimistic once, but he said he is currently more "defended "
 Interpersonal transformation. All parents also evidenced ways that their

interpersonal relationships changed due to their use of Floortime In some cases, the

practical and emotional demands of the model caused temporary changes to preexisting

relationships, such as some instances of strained marriages In others, parents actually

underwent remarkable changes in the ways they related, in general

Can make or break relationships Quite a few parents referred to relationships

that were either weakened or strengthened as a result of using Floortime For some, the

model was so time-consummg and emotionally demanding that they simply did not have

sufficient time or energy left for some friends or family members According to S,

autism itself "can bond you or it can end relationships," and she was willing to "cut ties"

with at least one family member who was not adequately supportive of her and her child

She explained how essential it was to be surrounded by positive supports In fact,

multiple parents emphasized the importance of bemg well understood and complained

that relationships with unsympathetic friends and family deteriorated, at least

temporarily Sometimes, it was less that people were unsympathetic but more that the

parents felt like they could no longer relate to ordinary problems when circumstances in

their lives felt so dire S said

It's very hard to be around people when they're talking about fluffy things
that don't matter when you're fighting for your child's life Because it
really does feel like life and death when you're talking about your child's
development

Sometimes a parent's depression caused them to isolate and therefore shut out friends

Other times, family members distanced themselves from parents in their time of need or

plainly denied that the child had autism at all

 More effective at relating Some parents thought they were able to use tools they

learned from Floortime to be more effective in their relationships To this day, S uses

strategies like lead-following to communicate more clearly with her husband M, a

professional who manages a department in a large company, spoke about how by seeking

out her coworkers' interests and entering their worlds rather than redirecting them, she

has become a more effective boss

More compassionate and less judgmental A number of parents said they felt

more compassionate and less judgmental as a result of using Floortime R thought she

became more tolerant and understanding of others J talked movingly about a process in

which he came to deeply empathize with all human beings, even his enemies

Parent-child relationship improved. One dramatic area of positive change for six

of the parents was in the parent-child relationship

We have a relationship now When parents were asked if their relationships with

their children transformed, some remarked that they have a relationship now, whereas

they had not felt like they had a relationship prior to beginning Floortime It was

common for parents to explain that their children were so withdrawn and internally

preoccupied before intervention that they had actually felt as though they barely knew

their children and that their children barely knew them Before Floortime, R thought of

her child as an "island" unto himself, she was even convinced that he did not know that

she was his mother She talked about how, as a result of using Floortime, the

development of their relationship paralleled the emergence of his personality

And so we began—that relationship began to emerge at that time It was

truly a relationship It wasn't just about the work It was about his
feelings and our feelings And you could see that it was working And
regardless, if he ever said a word, it didn't matter near as much as what
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was coming out—the emotional part of him coming alive and being part of
the family So, it was very special

A also remembered feeling estranged from her child prior to using Floortime

When her child was very young, they had a relationship, but it faded away after the child

experienced a regression in toddlerhood A responded to the question about the model's

effects on the dyadic relationship

My relationship with my daughter9 Yeah, it's definitely, like wow, it's

had a humongous impact on our relationship There was a period of time
where we felt like she was just gone Um, and she was just very not
responsive to us calling out to her, reaching out to her, she didn't have
much engagement with us, she wasn't really showing much joy in being
together with us, um you know so of course as a parent, that just sort of,
that's not going to fly and it's devastating, so I feel so grateful for
Floortime because I feel like we have really managed to get that
relationship back and I think that is really the most rewarding piece for me
is just having the opportunity to be with her every day and be on the floor
with her playing and you know making it happen, helping facilitate that
relationship again where she feels comfortable enough in her body and
comfortable enough in her environment to suddenly be responsive and you
know be engaged and initiate and laugh and you know show humor and
start to talk and all of those things I mean I can't say enough about that
um, so yeah it's had a huge impact on our relationship

We have a better relationship now For the parents who felt that they already had

relationships with their children at the time they began using Floortime, most claimed

that their relationships improved as a result of using the model Prior to having a child, S

dreamed of one day having an intimate, affectionate relationship with a future child She

was thrilled when her bond with her child developed just as the Floortime materials

suggested it should and would—from "wooing" to "falling in love " She talked about

how Floortime gave her the relationship she had always wanted

The emotional connection that DIR—that's that healthy development

thing that I was talking about that the model is based on—that's what is
necessary for a child to heal, and so we have that thank God [My son]
lays on my lap and we read books and you know, we do all of those things
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and we didn't do that before He didn't you know he didn't sit on my lap
We didn't snuggle You know, he wasn't able to do that, and now can
And you know, that's my dream We do that now Those hugs and kisses,
and that's all a result of implementing DIR

M highlighted improvements in attachment and shared excitement She summed

up the state of her relationship with her child at the time of her interview

I think we are very, very close Um as a mother and child as close as we

are, I mean my husband calls him my psycho son—you know he's psycho
about me He is my biggest fan m the world His face lights up when he
sees me Like literally lights up

Found a new kind of love M was also one of a couple of parents who recalled

learning new qualities of love as a result of using the model She said "I have never

been loved like this before I've never been loved like this My child's love is like this

one thousand watt spotlight that's right on me It's like amazing " J was more focused

on a transformation of his own ability to love Like S, he recalled a phenomenon that

"was like falling in love " He said "I was surprised at the force of love, I guess, that will

impel you to do things you never thought you would do "

Better/different parent Parents frequently talked about ways that Floortime

changed the ways they parented, usually for the better Some changes included being

more "hands-on," more nurturing, more "focused" or "concentrated" on the child, more

patient, or more "intentional " Some talked about practical changes, such as being more

invested in where their children go to school or more knowledgeable about child

development M recalled how changes in her life perspective caused her to be a different

parent "I think it just made me a much more kinder, aware parent and I don't make

drama of all things " A connected ways that Floortime taught her about herself and her
child with improvements in how she parents both of her children, not just her child on the

spectrum She said

Um, you know on the positive side, I think I am a way (laughs) better
parent because of the Floortime, and I have learned so much about her and
about my other child and about myself, and kind of like what my strengths
are and how I can utilize the strengths to help them both meet their
potentials I mean, I learned so much

C talked about how her parenting improvements came at the cost of her own well-being

She said

I think it has probably been good for me as a parent I mean I think I may
be a better mother, but it has been hard emotionally, I don't know if I
could say being a Floortime parent has made me a happier person—you
know there has been a lot of stress and a lot of pressure, but I do think it
has made me a better mother—if not a happier mother' (laughs)

Understanding the child better Others spoke about how they felt that their

parenting improved in part because they came to know their children better M said "So

because of Floortime, I feel like I got a unique insight into his life You know, into who

he is, not what I want him to be " She went on to say that she thinks her child knows that

M understands and respects him and that this awareness underlies why he trusts and

adores her so much

Few changes when already a goodJit Four parents who thought they possessed

personality traits that were particularly compatible with Floortime prior to using the

intervention also thought they underwent few or only minor changes as a result of using

it In some cases, parents reported that the experiences of having a child with an ASD

and using Floortime primarily amplified preexisting personality traits For example,

some who considered themselves to be assertive and protective parents before their

children were diagnosed claimed to be more assertive and more protective as a result of
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their experiences M was proud of the personal attributes elicited by Floortime She felt

more sincere and "more like [her] self " S was another parent who thought that using the

model amplified some character traits She talked about how she was always a "momma

bear" type of parent, but the combination of Floortime and parenting a child with autism

made her even bolder Her statements about feeling more like herself hinted at some

possible confusion about how to assess whether or not she had changed For instance,

she slightly contradicted herself when she said "I'm a different person I mean I'm the

same person, but I'm a very different person " Later in the interview, she concluded "I

don't know if I've really changed, I just have matured more "

Cluster 4: Goodness of Fit

Themes concerning goodness of fit are presented in Table 4, which is followed by

detailed descriptions of each theme

Table 8

Superordinate Themes for Cluster 4 Goodness of Fit

Sections with Superordinate Themes
Was the right intervention, despite struggles
You're either DIR or you're not
Helps to have compatible personality, but not necessary
Accepts centrahty of parent
Values
Strong family values
Child-centered values
Personality Traits
Confidence and strength
Capacity to play
Tolerance of ambiguity
Capacity for self-reflection
Compassionate
High standards for self
Introverted
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Was the right intervention, despite struggles. When asked if they thought they

had chosen the right intervention for themselves and their children, all parents answered

that they had Whereas the majority answered 'yes' emphatically, C's response was less

enthusiastic She ultimately thought Floortime agreed with her on a basic philosophical

level, but she was dubious about whether her child responded better to the model than he

would have to ABA or another intervention In retrospect, she also questioned whether

Floortime was the best fit for her personality, wondering if the model favored parents

who were more extroverted and extreme

You're either DIR or you're not When asked if they thought they had been

appropriate candidates for Floortime, two parents were adamant that to be a good fit, an

individual must be prepared to be immersed in the work and fully absorb the Floortime

philosophy—sometimes to the exclusion of all other models This extreme attitude was

exemplified by S, who firmly asserted "You're either DIR or you're not" Of people

who insist that Floortime can be a feature added to other programs, like ABA, she said

"You do not incorporate DIR into ABA " J did not express as adamant an opinion, but he

voiced a conviction that one must absorb oneself m the model

I feel you can't do it half-heartedly, um then you are setting yourself up

for failure You have to really get involved, basically immerse yourself
into this experience so that it just doesn't become you know you had a
Floortime session and then you had the rest of you life kind of, but
continuous and reinforcing the structured session um is reinforced by the
more playful unstructured sessions, and there is a synergy between the
two Um so you know basically when you are doing such a structured
session, you are still following the same principles but you are doing a
specific activity—that way so unless you kind of make it part of your um
part of your um being and your way of interaction overall, then it becomes
very difficult and it would be very inconsistent, so during the session you
are following the child's lead but then other times you behave differently
Then you know it can be confusing to the child, so you have to have a
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very consistent approach um so those are the mam things I think that are
really important

Not surprisingly, the parents who were most vocal about the need to devote

themselves to the model tended to be the parents who used the model at higher weekly

frequencies C, the parent who used the model the least number of hours per week and

also integrated other approaches into her child's program, was critical of parents who

insisted that there was a specific way of being a Floortime parent, she experienced them

as being overly rigid and judgmental The "right way" attitude caused her to question the

goodness of her fit, and, in turn, her doubts sometimes impacted her ability to be fully

present with her child

Helps to have compatible personality, but not necessary. While the findings

from this study seem to suggest that parents who have personality traits that are

compatible with Floortime might adapt more easily to the model than those who do not,

three parents did not believe it was necessary to be perfectly well-matched After J

recounted ways that he was not ideally suited to the model, he said he found it

"empowering" to find his "own way" with it Similarly, just because C's introversion

sometimes contributed to difficulties with playfulness, she did not think it ruled her out as

a good candidate for the model

Accepts centrality of parent. When discussing the attributes of an individual who

is a good fit for Floortime, six parents talked about the importance of accepting the

centrality of the parent in a child's therapy and life, in general Some parents emphasized

that their own decisions to use the model were facilitated by their readiness to be

accountable to their children R, the parent who talked about the need for parents to "take

command of everything," said plainly "I accept that / am responsible for this child " S
linked her belief that some parents' insecurities impact their reactions to Floortime with a

belief that some parents are not prepared to be a primary attachment figure for their

children She said

I think that some parents who maybe lack, um, confidence in their
parenting or in their ability to really be that primary person to their child—
to identify themselves as that primary person who is going to be able to
bond with the child to heal their child—sometimes parents feel it's easier
to just, you know, here have the therapist do it, because they are scared

Personality traits. This section describes themes related to personality traits that

were associated with goodness of fit

Confidence and strength. S was one of four parents who emphasized how

helpful it is to be confident when adopting Floortime She thought the decision to use

Floortime specifically had something to do with how parents feel about their parenting

She said "I think DIR tends to draw parents who have confidence in their parenting

ability " Some parents hypothesized that those who choose ABA over Floortime are

afraid to be principally responsible for their children's therapies and therefore prefer to

hire therapists R asserted that some parents are so afraid of their children's behaviors

and interests that a model like Floortime can be threatening, as it asks parents to squarely

take on the child's perspective and enter the child's world of interests

When discussing what it takes to be a good fit for Floortime, some parents

pointed out the importance of strength R recalled that it took "strength of steel" to stay

committed to being her child's teacher and restrain herself from giving in to his tantrums,

when succumbing would have been the easier option J described a "toughness" that was

necessary in order to suppress negative thoughts and feelings while working with his

child
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Capacity to play. Floortime demands a tremendous amount of playfulness of

parents For this reason, parents who described themselves as naturally playful seemed to

adapt quite easily to aspects of the model that call for lively, hands-on play When asked

what kind of person is best suited to Floortime, M highlighted playfulness In her

experience, she observed that the parents who do best seem to possess a capacity to

play—not just a value of or respect for the importance of play She also emphasized that

being playful is far more important than being "more about curing or fixing their kids," as

she noticed that 'fixer" parents struggle more with the model

Just because relatively more playful parents seemed to have an easier time with

the model did not mean that less playful parents could not be successful For instance, in

A's case, she considered herself to be a natural at rudimentary play activities when her

child was young, but she struggled greatly with more sophisticated imaginative play

when the child was older When B and C decided to use Floortime, neither was the type

of parent who naturally got on the floor and focused on playing with their children for

extended periods of time However, by virtue of using Floortime, both felt progressively

better at and more likely to play over time It should be noted, however, that one

significant area of overall difficulty for C was play It is unclear to what extent her

difficulty can be attributed to her own personality or, her child being especially

disinterested in play,

Tolerance of ambiguity. Four parents spoke about ways that Floortime

demanded a high tolerance of "not knowing " M thought one reason Floortime came

easily to her was because she is someone who is "comfortable with ambiguity " In fact,

one reason the model appealed to her was because it neither made empty promises nor
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marketed certainty in the way she felt that some other interventions did In her early

research process, she was skeptical of ABA's emphases on data and systems, as she had

the impression that the approach was developed by "a lot of people just trying to read

some rules in a place that there were no rules "

C and A were two parents who talked about being relatively less comfortable with

ambiguity, and, as a result, had harder times in some ways Going into Floortime, C was

a thorough, detail-onented worker When she encountered Floortime's relative lack of

structure and measures, she struggled because she wanted to know what to do and what to

expect, which added to her already active doubts For A, the lack of definitive right and

wrong ways to do things contributed to her difficulty with maintaining perspective, which

in turn added to feelings of overwhelm and episodes in which she was hard on herself

Capacity for self-reflection. Many parents demonstrated the necessity of having

a well-developed self-reflective capacity In order to be emotionally present during play

interactions, they routinely showed the importance of being able to examine and censor

thoughts, as well as to name and contain emotions A said

I feel that to be a good Floortime person, you have to have the ability to be
reflective, and I think that a lot of parents don't come by that naturally and
you know that there are some parents out there who do not come by that
naturally but that—could there be like training for parents who want to be
involved in Floortime and help them learn how to be more reflective
thinkers

Compassionate. When asked to depict who they were at the time of diagnosis

and needing to choose a therapy method, many parents described qualities linked to

compassion, such as being empathic, kind, giving, and loving Three parents talked about

or demonstrated the importance of having compassion when using Floortime J, a parent

who was greatly influenced in childhood by his mother's immense compassion, stated
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that he would have been unable to help his child had he not been empathic He believed

that his ability to identify with others' problems was a key to his success with his son

He said "Without empathizing with his situation, there was just no way I could have

connected with him " Similarly, R talked at length about the importance of being able to

get an accurate understanding of the lens through which a child with autism perceives the

world After a Floortime therapist described to her in detail how children with autism

sometimes think in pictures, she was better able to embrace her son's world without

feeling compelled to bring him into hers

High standards for self. Four of the parents interviewed for this study described

being prone to perfectionism While these parents highlighted various consequences of

holding oneself to high standards—such as self-doubts, stress, low tolerance for

ambiguity, and a heightened self-consciousness about how they were perceived by

others—they also hinted at ways that perfectionism served them well While it is not

clear if there is a correlation, it is interesting to point out that some of the parents who felt

they were particularly hard on themselves also seemed to be particularly diligent and

reflective

Introverted Just two parents described themselves as having qualities of a classic

introvert J referred to himself as a quiet, "phlegmatic" man who prefers to have only a

few very close friends and once even considered becoming a monk He did not think that

being an introvert affected his ability to learn and use Floortime largely because the

power of his parenting instinct compelled him to bypass feelings like shyness or self-

consciousness that could have gotten in his way Unlike J, C believed that her

introversion sometimes negatively impacted her ability to adopt the model Floortime
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values like accentuated affect and energetic play did not come easily to her She

concluded that a parent who could be like a "clown" or an "actress" would likely have

been a better fit than her Nonetheless, she felt that her relatively reserved demeanor did

not rule her out as a capable interventionist

Values. This section details themes about values that were associated with

goodness of fit

Strong family values. All parents interviewed for this study endorsed a number

of personal attributes that indicated that they had strong family values, and some referred

to their family values as evidence that they were properly suited to Floortime All parents

described aspects of their childhoods that were happy, and many recalled growing up in

tight-knit families—some with particularly influential parents or grandparents It was

common for parents to cite how their own happy childhoods were influencing factors in

their visions for creating their own tight-knit families Many talked about how important

it was for them that they and their children be close, interactive, and loving

Child-centered values. Similarly, all parents endorsed personality traits that

exemplified child-centered values, and many described these values as reasons why they

thought they were ultimately compatible with Floortime Parents frequently depicted

their styles as being "hands-on" and "respectful" of early childhood

Attachment It was also common for parents to stress that they possessed respect

for attachment that preexisted their introduction to Floortime For example, D was a

dedicated "attachment parent" who instituted a family bed and ensured that either she or

her husband were constantly in their children's presence during their early years
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Learning through experience and personal motivation Many parents

underscored the importance of supporting a child's natural interests and supporting their

unique, self-motivated learning processes For instance, A has always been dedicated to

helping her children find their own passions She said

I can remember when she was an infant sitting there and thinking, wow
the whole world is open to you and it's like my responsibility to kind of
lead you through that or but also not close too many doors but I also feel
like urn I guess one of my values is that I do feel like it's important for my
kids to find their own way to a certain degree—I mean obviously with
guidance and support, but I don't want to be one of those parents that's
like forcing them to do x, y, and z because I think that's what's important
I really want to be respectful of their opinions and their ideas and what
they already bring to the table or what their interests and passions are

Cluster 5: Support Needs

Cluster 5 includes themes related to support needs named and discussed by

parents The themes are presented in Table 9, which is followed by a description of each

theme

Table 9

Superordinate Themes for Cluster 5 Support Needs

Superordinate Themes
Emotional and practical support is critical
Clinicians can dramatically influence quality of parents'

experiences

Emotional and practical support is critical. All parents spoke about how critical

emotional and practical support was Many parents added that they would have been

unable to maintain their Floortime programs had they not had support for others D

declared "One person can't do it all" Similarly, A said

it's very important, I can't stress enough to other parents who are
choosing this model It's incredibly important to find that support
somewhere because if not, it is next to impossible It takes a lot out of a
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parent It is very rewarding, but it is also very demanding and I mean that
in as positive a way as possible (laughs)'

Friends andfamily Of particular importance was the feeling of being understood

by others, and parents most often cited friends and family members as the people whose

understanding they most desired J talked about how grateful he was that he eventually

decided to sit down a select group of friends and educate them about autism and

Floortime so they could better support him and his wife He recalled that this was just

one component of a master plan for "expanding the circle of care" for his son

Spouse Many parents pointed to their spouses as their most effective and reliable

sources of practical and emotional support Some talked about the need for partners to be

in sync about decisions and other matters R recalled parents she knew who fought

constantly and could not reach an agreement about their child's diagnosis, thereby

delaying the child's treatment She concluded "So the cohesiveness of the mother and

father is critical in treatment with any child with autism, but especially with Floortime "

Like some other parents early on, D and her husband achieved a balance by divvying up

duties Because her husband was able to do the grocery shopping and handle most

financial concerns, D was freed up to focus on her child's therapy A focused more on

the need for emotional support from the other parent She talked about how her husband

helped her regain perspective by reminding her of the big picture and reflecting on how

well she and their child were doing

Other Floortime and ASD parents Many parents msisted on how crucial their

relationships with other parents of children with ASDs were—particularly Floortime

parents They talked about how Floortime parents were better able to understand the ins

and outs of their days, offer practical suggestions, and empathize with their unique
emotional situations Hearing similar parents' stones tended to have a normalizing effect

and often conveyed a sort of forgiving attitude, which made the work easier for some A

recalled telling one of her Floortime therapists "As much as we [parents] listen to you

and to the other professionals we work with, we listen to each other a lot more " She

followed up with "Because it's true you know To have someone else who is in the

trenches all day long understands you and hears where you're at and gets it, that goes so

far"

C felt differently Whereas she would have appreciated support from other

parents, she did not receive it from the Floortime parent community Actually, she

thought many Floortime parents were intense and judgmental, and she thought they

propagated extreme ideas about "right ways" to do Floortime that she found

counterproductive

A number of parents were involved in ASD or Floortime parent support groups,

with at least two parents leading their own groups Some parents met regularly with a

group, and all took advantage of at least one Floortime listserv A talked about how vital

her support group was

So for me, having the support and just kind of coming together with a
group of people who are like-minded but also have the same struggles is
huge, because it makes you feel like you're not alone because it's true a
lot of days, you feel really like you're just totally alone and nobody gets it,
and that can be so frustrating And there's days when you really need that
support You need to hear that there is someone else who understands
where you're coming from

Reference materials Many parents relied heavily on Floortime reference

materials, such as books and videos Parents who lived in parts of the country where

Floortime was relatively less accessible seemed most dependent on them

 M, a parent who lived hours from a major city, often turned to reference materials

for support in lieu of a thriving local Floortime community and solid professional

support She remembered how much hope she derived from listening to podcasts

I used to burn Dr Greenspan's lectures on CDs and listen to them in the

car You know, and he just infected me with his just his optimism, his
energy, his real thinking about things, his way of thinking about you
know, all of this His attitude was a very looking forward attitude His
attitude was very respectful toward autistic people, you know, and he was
the eternal optimist It's not that [Floortime] ever give[s] you a message
of hope Like, nobody ever talks about, like, be hopeful, be positive, be
optimistic

Although most parents spoke favorably about reference materials, they commonly

also voiced some complaints about omissions and limitations in the literature

For instance, D wished there was more written about the advanced milestones, and since

she now has a teenager, she yearned for anything having to do with adolescent or peer

development When she found the Floortime literature to be lacking, she turned to books

about the Montesson philosophy, which she thought complemented Floortime well and

more adequately covered the later years She also spoke of the absence of literature

written by and about parents She shared her wish for a book to be written about the

emotional experiences of parents who use the model She speculated that by hearing

about other parents' honest reactions, parents' own emotional responses would be

normalized and their expectations of themselves would be better contained She said

I would really love to see something out there from a parent perspective
that talks about successfully using the program while simultaneously you
know allowing—saying you know it's okay to be exhausted, it's okay to
be burnt out, it's okay to be angry, it's okay to be frustrated, it's okay you
know that your child didn't make any progress today or this week or this
month or this year, it's okay if you don't do the program perfectly, the
point is you attempted to do it I think all of the material that's out there
talks about the philosophy itself but it doesn't talk about the parents'
toll—and toll isn't even the right word, because toll has a negative
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connotation, but the role that—the amount of—the the toll that it takes on
parents It's exhausting It's time-consuming It's 24/7

Clinicians can dramatically influence quality ofparents' experiences. Parents

unanimously agreed that support from clinicians was crucial Floortime professionals

were especially critical, as parents often felt that they were more likely than others to "get

it" than others

Child's therapist is parent's therapist too Some parents emphasized that they

considered their child's therapist to also be their own therapist J wished to advise

Floortime clinicians to remember that "as much as you are doing DIR with the child, you

are really doing DIR with the parent" Around the time of B's interview, members of her

treatment team had announced that they could no longer work with her family She

stressed how important it is for clinicians to remember how much impact they have on

the parent's experience, and she talked about how hard the change was She said "I

mean [my child's] therapist is changing, but my therapist is changing too And it means a

new person in my house that I need to create a relationship with "

Floortime professionals are like family In A's case, members of her Floortime

team came to feel like family She consulted with Floortime experts outside her home,

and she also hired young people as "Floortime helpers" to assist her at home Because

her helpers witnessed her life in action, cared for her child, and knew exactly what

Floortime was, A felt better understood and supported by them than even members of her

actual extended family

There are specific ways professionals can support parents' emotional states All

parents shared ways that they felt particularly supported or unsupported by professionals
 147

The following is a list of ways clinicians can best support parents' emotional well-being,

according to the parents

Clinicians can impart faith Many parents talked about how clinicians can greatly

help parents by imparting faith, particularly in the most difficult times, such as when a

diagnosis is fresh or when a parent and child are stuck in a frustratingly repetitive pattern

Some parents said it was or would be useful to be helped with perspective-keeping, and

some found a clinician's optimistic tone to be especially soothing After M's earliest

consultation with a Floortime professional, she walked away feeling dejected because she

felt like her child was not fully acknowledged She wished the professional would have

seen and spoken more to her child's potential D and a number of other parents talked

about how challenging it was to be patient, particularly when they were aware of time

pressures She talked about how she was riddled with doubts at times

And then you know especially if it's taking some time for your child to
make progress, then initially you feel like well God did I make the wrong
choice9 Were all these people right in telling me you know that I was
choosing the wrong methodology9 Were they right in telling me I should
be using ABA instead of Floortime9 Did I just wasted three months in
doing something with my child that really isn't gomg to work9

D would want other Floortime parents who struggle similarly to be reminded "It takes

time, it's exhausting, there's a lot to learn, [but] hang in there It works "

Clinicians can empower parents A number of parents emphasized the importance

of empowering parents to feel confident and competent S said "The biggest impediment

to who will use Floortime and who will not is how well their confidence is supported "

Some parents talked about how useful it was when clinicians gave them tools but did not

overwhelm them with unattainable goals or too much information A recalled how
 148

helpful it was when her therapist gave her manageable goals, such as fitting in a couple of

sessions a day, instead of the often recommended eight session a day She said

Our first consultant was fabulous in the sense that she was very aware of
what else we had going on and where I was in that moment and how can
we still find way to fit something in that would be rewarding enough that I
would see the connection and see the gleam in her eye and I would feel
rewarded by that, of course You know because that's what I am looking
for, that's what I want out of her, so of course that's going to encourage
me to do more, right9 So, she was very smart in that way

J thought a way of empowering parents would be for clinicians to coach parents

on "how to take things into their own hands" by not only ensuring that the parents know

the Floortime fundamentals, but by also arming them with resources He pointed out how

cost-prohibitive frequent therapy sessions are and how parents are therefore frequently on

their own, so, it would be helpful, he thought, for therapists to support parents'

independence from the get-go

Parents also felt empowered and comforted when therapists told them when they

were doing a good job D said

If you're a therapist and you're working with a family, you know if you're
giving the child a gold star, give mom one too You know, mom needs a
gold star also Moms and dads need gold star also, you know

Clinicians can assess and address parents' mental health Some parents talked

about how helpful it was when professionals acknowledged their moods and overall

mental health J thought it would be useful for professionals to routinely and directly ask

about parents' well-being Many wished that therapists would empathize better with the

troubles of a parent who recently received their child's diagnosis and better understand

how they can best support a parent's ability to take in information and use Floortime
 149

Clinicians can communicate honestly and clearly Parents tended to consider their

work with professionals to be a collaborative process, and some underscored the

necessity of open, honest communication Some parents emphasized the importance of

clarity, talking about how much they appreciated Floortime therapists who explained

concepts and did not "dumb things down," but also did not use too much jargon or

superfluous language One theme was that listening is as important as teaching R

mentioned that the parents of recently diagnosed children tend to have countless

questions and want desperately to be heard Another theme that was applicable to the

need for clear communication was that different parents need different kinds of supports

No two parents interviewed for this study had identical personalities or identical learning

styles Finally, another related theme was that it is helpful when therapists help parents

plan their next steps B wished her therapists had helped her anticipate their termination

by giving her clearer and more advanced warning

Clinicians can realize that the tone of their coaching can impact a parent's sense

of self Most parents were remarkably sensitive to being coached Encouragement was

generally welcomed, whereas anything that could be interpreted as critical was often

experienced as painful and counterproductive One aspect of coaching that was

sometimes difficult to take was that it communicated to parents that their intuitive ways

of being and playing with their children were not good enough Although B was

generally open to and accepting of feedback, she remembered periodically thinking to

herself " why can't I just be playing with my child naturally?" She went on to

elaborate on how coaching sometimes felt like bemg told she was doing things

incorrectly She said

 150

And you know it was how I could do it differently So, yeah, having
somebody tell me how to play with my child—and they weren't doing it in
a bad way, they were making suggestions and stuff—but it's hard It's
your child You know you assume when you have children that you are
going to raise them and play with them and do things the way you want to
do it, not the way someone else is telling you to do it

C was another parent who was sensitive to being coached For example, she

sometimes experienced being told to be livelier as a communication that there was

something wrong with who she actually was When she followed the clinician's direction

and acted more energized and animated than she would ordinarily be, she felt "fake "

When asked what might be a better way of coaching, C was stumped Although she

suggested that clinicians try to help parents find their own genuine way of doing

Floortime, she was not sure how they would do this She spoke about parents' dual needs

for positive feedback and encouragement However, she believed that most parents

would always feel vulnerable to direction, no matter how gently delivered, and, in her

experience, especially supportive therapists were also challenging, because they censored

themselves too readily and did not realize "it would be okay to give [her] more " She

concluded that clinicians would always have to straddle a delicate line between being

constructively critical and supportive

Clinicians can demonstrate more Most parents mentioned the importance of

demonstration, and many wished that their Floortime therapists had demonstrated more

often An impressive number of parents complained that therapists overloaded them with

reading materials or suggestions for further research Many parents recalled feeling

burdened by the suggestions and ultimately guilt-ridden when they did not follow through

with them Many parents also said they learned best by doing or seeing, and they learned
 151

least well by reading By watching a seasoned clinician work with their children, parents

felt reassured and supplied with ideas

Clinicians can reinforce Floortime fundamentals Some parents talked about how

key it is to really understand the theoretical bases of Floortime J suggested

There should be a lot of emphasis on actually getting the fundamentals of

the model, because you could get—-just the name Floortime is misleading
in a sense—people think you just play with the child, but if you don't
master the basic stuff, like the developmental model, if you don't have a
good mental map of how you know healthy development happens and
really not understanding where the child is, uh and teaching the interaction
at the right level—all those fundamental things if you don't get them right,
you can spend a lot of time not getting the right output, so they should be
focused more on getting that understanding Um and then it will flow
after that point It could sound a little theoretical, but I think knowledge
comes first and then um action—understanding is a much more powerful
and efficient I feel than just techniques

Clinicians can respect the parent and temper authoritarian mentality Many

parents stressed a wish that clinicians would respect the parent and not abuse their

professional authority Likewise, some parents talked about the need for parents to stick

to their own parenting instincts D said " if there's any advice I could give any parent,

it's never substitute your instinct as a parent for a professional's opinion or judgment"

Although few parents were critical of Floortime clinicians, many parents complained

about other clinicians who undermined or misled them

M was one of the few parents who voiced considerable disappointment in a

Floortime therapist At her first Floortime consultation, she experienced the therapist as

distant, dispassionate, and overly confident It was relatively unimportant to M that the

therapist was brilliant, professional, and full of answers She wished far more that she

had been emotionally supportive She recalled how the therapist let her down
 Her advice actually was spot on—which I realize more and more as the
years have passed—and her report a work of art, but it was delivered
coldly and with a lack of passion that really discouraged me So, she had
all the expertise in the world but her attitude alienated me

She followed up with

The experts need to not pretend that they have all the answers I think
expertise is very important but I think it needs to be coupled with
encouragement and empathy and optimism I think I am willing to trade
some expertise for a lot of positive energy and humor
 153

Chapter 5

Discussion

Compared to most other prevalent intervention models for children with ASDs,

Floortime parents' responsibilities are uniquely demanding Whereas it is common for

parents of children who use ABA to struggle with logistical concerns like managing the

comings and goings of treatment providers, parents who use Floortime must also contend

with a number of struggles related to being at once a child's program manager, parent,

and primary therapist This study is particularly concerned with the emotional demands

of simultaneously balancing such diverse roles It is concerned with what it takes to

maintain the emotional presence called for by Floortime in the face of diagnosis reactions

and other realities of raising a child with an ASD—not to mention the regular challenges

of parenting any child

To achieve its aims, this study examined the experiences and thoughts of parents

who implemented Floortime intervention programs for their young children with ASDs

Eight parents were interviewed and asked questions about different aspects of the model,

most of which emphasized emotional experiences The interviews were analyzed, and 51

themes emerged Themes were arranged into 5 clusters Cluster 1 included themes

related to finding Floortime, such as diagnosis reactions that surfaced around the time of

looking for interventions and how parents ultimately decided to use Floortime Cluster 2

contained themes that pertained to the early process of using Floortime, the general

process of using it, and how parents coped The themes in Cluster 3 depicted Floortime's

effects on parents Those in Cluster 4 concerned goodness of fit, such as which values
 154

and personality traits seemed to be best suited to the model Finally, Cluster 5 consisted

of themes about parents' support needs

Summary of major findings. The results of this study confirmed that Floortime

was in fact an emotionally challenging model to maintain for the parents who

participated The results also indicate that adopting Floortime was an immensely

rewarding process that yielded extraordinary results and high levels of parental

satisfaction This section lists the major findings (see Table 10) and details each finding

with a brief description

Table 10

Major Findings

Headings
An emotional experience
Emotions affect use of Floortime
Experience changes over time
Demands personal sacrifice
Can be transformative
High parent satisfaction overall
Helps to be compatible
Support is cntical

An emotional experience. The most prominent finding to come out of this

research centers on how emotional the experience of facilitating a Floortime program

often was for the parents who were interviewed for this study Participants described a

remarkably wide array of emotional reactions Their accounts suggested that it is typical

for parents to experience a variety of positive emotions as a result of using the model,

some of which included joy, pride, and relief For instance, a child's progress was

universally rewarding and inspired some of the more intense examples of positive
 155

emotional reactions, such as elation and awe when a child achieved a new milestone It

was also common for parents to reference negative emotional reactions, such as stress,

which was the reaction most frequently cited Some other challenging responses

included frustration, guilt, and resentment Many participants talked about how worried

and demoralized they felt when children temporarily stopped improving, at which time

they were plagued by persistent anxieties about how much progress the children would

make Some wondered in fear "Is this as good as it gets 9 "

Although some parents described their overall emotional experiences as largely

positive, the majority depicted a repetitive series of ups and downs, which two parents

referred to as an emotional "roller coaster " For some parents, ups and downs were more

intermittent and infrequent For others, the occurrence of ups and downs was more

regular and frequent One week would be filled with great successes, which triggered

feelings of excitement and bolstered self-confidence The next week would be dominated

by reactions to feeling stuck, such as disappointment, guilt, and impaired self-confidence

Two of the most emotionally tumultuous time periods described by parents often

overlapped the time around diagnosis and the earliest phases of learning and adapting to

Floortime For all parents, the time around diagnosis was fraught with difficult feelings

Some diagnosis reactions commonly named by participants were shock, denial, relief,

devastation, fear, anxiety, overwhelm, and frustration In the early days of using the

model, although some parents felt energized and reassured, it was more common for

parents to experience stress, uncertainty, self-doubts, and self-consciousness

Emotions affect use of Floortime. The potential for emotional states to impact a

participant's use of Floortime constitutes another significant finding Early on, when
 156

diagnosis reactions were most potent, some parents had a difficult time putting aside their

feelings in order to be emotionally present with their children Some parents emphasized

that in the early days, they were still struggling to accept and reconcile the diagnosis

Therefore, they initially found Floortime's basic principles of accepting and entering the

child's world difficult To join a child's self-stimulating behaviors meant facing the

child's ASD head on, and neither parent was initially comfortable with that reality of the

diagnosis In fact, pain related to the diagnosis led to episodes of active denial and

withdrawal for both

Over the course of time using the model, a number of parents' shifting moods

entered their Floortime practice Good moods were universally described as facilitating

of the treatment, whereas bad moods were generally believed to impede it For one thing,

some parents felt guilty when they were not bubbly, and it seemed like the guilt was more

responsible than the original bad mood for getting in the way of the intervention Some

parents believed moods were particularly consequential because of their children's

heightened sensitivity to others' mental states For instance, it was common for parents

to describe occasions when their own frustration, anger, or sadness caused them to act out

during sessions, which in turn caused their children to become deregulated and derailed

treatment for the entire day

Experience changes over time. Participants' experiences with Floortime were

not static For instance, most parents described a similar trajectory of adaptation, which

began with early struggles and gradually progressed into an experience that felt more

natural Parents often attributed their increased ease with the model to how effortlessly it

blended in with their daily lives Many appreciated that it seemed more like a lifestyle
 157

than a therapy Another reason many parents felt that the model got easier over time

related to their children's progress For instance, as children got better, they were often

more easily engaged and could sustain interactions for longer periods, which caused time

together to feel less like work Furthermore, parents often experienced their children's

progress as motivation to do more Floortime

Not all facets of Floortime became easier over time Sometimes a child's

progress actually set the stage for disappointment For example, some parents commonly

described feeling stuck When a child made exciting strides only to suddenly experience

a regression or other setback down the road, parents often felt defeated, scared, or lost

For some parents, the model got more difficult over time due to what was asked of them

For example, the early stages of engaging a child were relatively simple for some parents,

whereas the later milestones, like pretend play, were more difficult for them due to the

parents' own limitations with imaginative play and quick thinking

Demands personal sacrifice. Another theme in the accounts of participants

involved putting the child's needs above the parent's own One noteworthy area of

personal sacrifice that was uniquely related to Floortime involved bearing a tremendous

sense of responsibility for a child's treatment and progress All parents touched on

continual stresses and pressures they experienced as a result of being the primary

individual in charge of treatment Many also talked about how exhausting the physical

and emotional aspects of maintaining a Floortime program were The large amount of

time and attention demanded of parents also meant that many gave up hobbies they once

found enjoyable, such as reading, going to movies, and pursuing social ambitions outside

the home
 Some examples of personal sacrifice were less specific to Floortime than to

parenting a child with an ASD and using an intensive intervention, in general, and they

ranged from trivial to highly consequential For example, some parents described ways

that their new demands meant eliminating manicures and other "frivolous" pleasures,

while some made radical changes, such as temporarily leaving jobs or drastically

reducing their work hours In some cases, parents even abandoned careers altogether

Despite the great sacrifices described by most parents, it is notable that most

parents did not voice complaints In fact, many felt grateful to autism and Floortime for

helping them reexamine life priorities Some described how changes did not feel like

sacrifices because their parenting instincts took over, or because they enjoyed Floortime

so much Most parents also recalled a gradual adaptation process in which the intensity of

difficult reactions to sacrifice seemed to subside over time, particularly as parents

loosened their standards for themselves

Can be transformative. Participants repeatedly recounted ways that they felt

changed as a result of using Floortime Some described ways that their internal worlds

had changed, and some described ways that their mterpersonal relationships had changed

The most remarkable mtrapersonal transformations involved grand-scale changes in

world-view and priorities For example, some parents talked about how they were less

likely to take the small things in life for granted after using Floortime Some parents

developed more optimistic ideas about human potential, which included improved

confidence in their own abilities Other changes referenced more than once included

improved capacities for compassion, happiness, and playfulness, as well as better self-

confidence and parenting competence, in general Less commonly, parents talked about
ways that they felt negatively changed, such as bemg more jaded and angry as a result of

the challenges related to parenting a child with an ASD and the responsibilities of

managing an intensive treatment program

Other remarkable transformations took place in the area of human relationships

Many parents spoke movingly about extraordinary changes that took place in the parent-

child dyad, evidencing improvements with examples like increased affection and stronger

attachments Some talked about how changes translated to other relationships, such as

how they interacted with spouses and co-workers They tended to feel like they were

more patient and more understanding of others, which led to greater effectiveness at

leading and helping others

High parent satisfaction overall. The overall opimon of Floortime was

remarkably positive Although every participant described struggles related to using the

model, each also believed it was the appropriate choice for his or her family In addition

to the many ways that parents felt personally rewarded and changed for the better due to

their experiences, all but one parent were certain that their children benefited

substantially In fact, many parents depicted "success stories" that involved a child

whose outlook originally looked gnm eventually overcoming the odds One child did not

speak a single word until his mother initiated a Floortime program Within six months,

he was verbal One parent remembered that her son was initially given a diagnosis of

mild mental retardation in addition to his ASD diagnosis Recently, he was administered

an IQ test and scored 154 out of 160 Parents named many other child achievements,

often emphasizing dramatic improvements in relationship and communication skills At

the time of interviews, almost all children were in mainstream schools and classrooms,
and a number had fnends Nonetheless, most parents also referenced struggles related to

their children's conditions that continue to challenge them

The one parent who was unsure about Floortime seemed less dubious about

whether Floortime helped her child at all than she was unsure if Floortime was the only

model that could have helped her child It is also worth noting that the uncertain parent

also described her child as functioning at a lower level than most other parents described

their children It is therefore possible that her child did not respond with comparably

dramatic successes, thus curbing the parent's enthusiasm

Helps to be compatible. In many ways, goodness of fit with the model seemed to

play a role in parents' experiences with the model All parents reported ways that

Floortime felt like an intuitive match for them based on factors like their values or

personalities For instance, strong family values and child-centered approaches seemed

to contribute to all decisions to use the model Some parents thought certain personality

traits facilitated relatively trouble-free expenences, examples included a good capacity

for play, a high tolerance of ambiguity, and a solid self-reflecting capacity Since no two

people are the same, it is therefore likely that personality style would be a significant

contributor to all parents' experiences, and that an extremely wide range of experiences

can be expected

Support is critical. Participants unanimously underscored the important role

social support played in the maintenance of their Floortime programs In fact, some

firmly believed that the model is only possible if one has support Although parents

outlined a variety of supports that were useful, emotional assistance was the most

emphasized means of coping with common difficulties, such as difficulty tolerating

 161

ambiguity, problems with discouragement, and loss of perspective Among the major

social supports frequently cited were spouses, friends, extended family members, and

individual therapists Floortime clinicians were routinely emphasized as a uniquely

important source of emotional assistance The climcal implications section below details

clinical recommendations relevant to this study's findings

Comparison of findings to published literature. Because this is the first known

study to specifically examine the emotional effects of Floortime, many of its findings are

novel and are largely unrepresented in the literature to date However, many findings are

consistent with the substantial body of existing literature that details the emotional

experiences of parenting a child with an ASD, in general

A large share of the literature focuses on stress, which was also a major focal

point for participants in this study Many studies conclude that stress and other turbulent

feelings are especially active around the time of diagnosis and during the years of early

intervention, which was corroborated by many of this study's participants who struggled

most during the early years Guralnick (2000) characterized three categories of stressors

that commonly affect ASD families early on First, he pointed out the overwhelming

amount of information that parents must find and navigate while searching for services

and supports Second, he referenced examples of interpersonal and family distress that

commonly surface during the assessment and diagnosis periods, particularly when

individual spouses react to and make sense of a diagnosis differently Third, he discussed

the considerable burdens on family's resources, such as time and money When

combined, Guralnick concluded that these three stressors ultimately "threaten the very

essence of sound parenting—that is to maintain a sense of control, confidence, and

mastery over the persistent and often surprising parenting challenges" (p 69) Because

Floortime introduces its own unique parenting demands, it can therefore be assumed that

an individual's capacity to use Floortime effectively in the early stages is likely

compromised Furthermore, some of this study's participants depicted a type of viscous

cycle that ensued after then- confidence was shaken, they recalled how insecurities often

triggered a guilt response, and the guilt further stimulated insecurities, and so on

It is important to point out that, of all the literature reviewed for this study, almost

all focused on stress reactions to the near exclusion of all other emotional experiences

Although stress and overwhelm were prominent feelings for many participants in the

current study, emotional reactions tended to be far more mixed, nuanced, and

individualized than they were portrayed in the reviewed literature

The results of this study also point to the likelihood that a parent's mental state

significantly impacts the quality of Floortime interventions, and this possibility is

strengthened by existing studies that explore the relationship between mood and

intervention quality Osborne et al (2008) found that the effectiveness of early teaching

interventions for ASDs was negatively affected by high levels of parenting stress, even

when parents were not responsible for delivering the interventions Interventions that

were more time intensive also corresponded with fewer improvements Literature also

supports that parents' complicated feelings about an ASD diagnosis can interfere with

optimal treatment provision Wachtel & Carter (2008) studied the relationship between a

mother's relative level of resolution about her child's diagnosis and features of her

interactions with her child They found that when a mother's difficult feelings and

thoughts about a child's diagnosis were better resolved, the parent-child interactions more
effectively facilitated the child's progress In play interactions, more resolved mothers

were better able to engage their children and more successfully encourage enhanced

reciprocity and greater mutual enjoyment

Gulsrud et al (2009) demonstrated the promise of interventions that support joint

engagement and teach co-regulation strategies in a study about emotion co-regulation

between mothers and their children with autism They showed that such an intervention

resulted in fewer expressions of negativity in children and improved emotional and

motivational scaffolding on the part of mothers The main relevance of these findings to

the current study relates to the Floortime's FEDLs (see Appendix C) Floortime success

rests largely on the mastery of the first FEDL milestone, self-regulation and shared

attention (Greenspan & Wieder, 2006) According to the developmental theory that

grounds Floortime, an infant or child who is unable to stay calm and regulated also

struggles with joint attention tasks and can fail to progress to subsequent developmental

levels

This study's results additionally showed that most participants' experiences got

easier over time, afindingthat corresponds with literature that depicts the longitudinal

course of parents' experiences with ASDs (Gray, 2002, L E Smith, Seltzer, Tager-

Flusberg, Greenberg, & Carter, 2008) For instance, Gray (2002) showed that it is

standard for parents' well-being and relationships with family members to improve over

time, as they habituate to their new life realities and acquire new coping skills

In the current study, there was some variation in the extent to which participants

were forced to adapt, as well as differences in how challenging parents found the initial

stages While it is likely that relative levels of compatibility with the model largely
accounted for the variability, it is also possible that participants' different styles of coping

contributed In a study of the effects of coping strategies on mothers of toddlers with

ASDs and mothers of adolescents with ASDs, L E Smith etal (2008) found that

problem-focused coping (which employs strategies directed at solving problems or

changing the sources of stress) was more effective at supporting maternal well-being

early on than emotion-focused coping (which employs strategies intended to control or

ease feelings of distress) It is possible that participants in the current study who recalled

smoother adaptations came to Floortime with previously well-developed problem-

focused coping strategies It is also possible that they felt less hopeless than other

parents, since hopelessness is often associated with emotion-focused coping

It was noteworthy that during the interview process, some parents more readily

expressed emotional material than other parents In fact, it was common for the parents

who reported rockier transitions to more freely and frequently share strong emotional

experiences, in general There are a number of possible explanations for the divergence

Parents who talked more about emotions may have been more self-aware than other

parents and therefore more likely to assess their emotional state on a regular basis It is

also possible that the more emotional parents were less defended against their feelings

and that the other parents coped in part by shielding themselves from intense feelings and

instead focused on "doing," which the Smith et al study would suggest is a more

effective strategy However, since Floortime so specifically emphasizes the importance

of emotional availability, it may not be advised that parents defend too actively against

feeling states, as such a defense could have a dampening effect on a parent's emotional

range and feeling of authenticity

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Findings about personal sacrifice and the potentially transformative effects of

Floortime shared further similarities with the existing literature on parenting children

with ASDs Tunah & Power (2002) described a process whereby mothers of children

with autism cope by redefining what is important in life and finding original ways of

achieving their newfound priorities Like some of the parents in the current study, the

mothers in the Tunah et al study de-emphasized their careers, acquired strong opinions

about the parent role, developed greater tolerance levels for ambiguity, depended more on

spouses for support, and tended to limit their leisure activities to the realm of the family

Furthermore, in concordance with the current study's finding that many parents actually

talked positively about the sacrifices they made for their children's Floortime programs,

Tunah et al showed that mothers who coped by redefinition exhibited higher levels of

life satisfaction than those who did not

There were also important inconsistencies between the findings in the topic of

transformations Most notably, instances of extraordinary personal transformations like

those captured by the current study were not were not observed in the literature review, a

point that further evidences the novelty of this research

The high levels of satisfaction with Floortime reported by participants in this

study were also consistent with past findings An R Solomon et al (2007) pilot study

investigated the effects of a parent-training program that used Floortime principles and

techniques Not only did the study report favorable child outcomes, but it also evidenced

high parent approval At one year after training began, surveys were distributed, and

results of those who completed them showed that 70% were "very satisfied" with the

program and none were dissatisfied Similar to the current study, the Solomon study also
showed that parents were able to be effective interventionists with their children For

example, a measurement of parent skills showed that 85% of parents interacted

"appropriately" during videotaped evaluations However, neither the Solomon study nor

any other known inquiry examines why some parents are more successful than others,

which renders this study's speculation into why some participants felt they were more

compatible than others highly original

One of the most meaningful findings to come out of the current study centers on

the critical role support played in the overall well-being of all parents, as well as in many

parents' abilities to maintain their Floortime programs Substantial evidence has emerged

from other research that further establishes the many support needs of parents with

children who have ASDs For example, some studies have demonstrated the

effectiveness of informal social supports in reducing parents' stress levels (Hastings &

Johnson, 2001), and others have demonstrated the usefulness of formal professional

supports, such as parent-focused interventions, in minimizing stress and increasing

parental self-efficacy (Keen, Couzens, Muspratt, & Rodger, 2009) In fact, numerous

studies have detailed the effectiveness of parent training as a support for parents (Koegel,

et al, 1996, Mahoney & Perales, 2005, McConachie & Diggle, 2007, M Solomon, et al,

2008) One major benefit of parent training is that it can yield improvements in a

parent's responsiveness to a child, which can in turn yield improvements in the child's

development Although no parents interviewed for this study shared that they took part in

a formal Floortime parent-training program, more than one had a somewhat analogous

arrangement with a Floortime professional that coached them and taught them the

fundamentals of model
 167

Clinical implications. One of this study's most significant themes centered on

the critical role Floortime clinicians played m the lives of participants Clinicians were

especially influential in terms of how parents felt about themselves and their children

Because another major finding was that parents who felt better about themselves and

their children were often more emotionally available and effective, it is important to

discuss ways that parents can be supported

The following is a proposed set of guidelines for working with Floortime parents

that could be useful to any professional or paraprofessional who works with them

Additionally, because the literature on parents and ASD interventions so overwhelmingly

supports the effectiveness of formal parent training, the guidelines could be used to

inform the development of parent trainings that utilize Floortime, such as those delivered

by the PLAY Project The guidelines were informed by the results of this study,

however, it should be emphasized that this was an exploratory study, so conclusions

should not be considered authoritative Table 11 lists the clinical guidelines, and a brief

description of each guideline follows

Table 11

Clinical Guidelines

Headings
Do not underestimate the power of your influence
Be sensitive to emotional reactions to ASD diagnosis
Make space for a variety of emotions
Consider how your own attitude can influence parents' mental states
Remember that no two parents are the same
Avoid communicating "right way" mentality
Help parents anticipate
Do not overwhelm
Respect the parent and the parent-child dyad
 Do not underestimate the power ofyour influence. Clinicians should be

sensitive to the central role they play in the lives of Floortime parents—particularly the

role they play in parents' emotional well-being Many parents in this study talked about

ways that they considered Floortime professionals to be like family members, or ways

that they considered their child's Floortime therapist to be their therapist too It was

common for a parent to recall occasions when a clinician's tone or specific remarks

dramatically impacted the parent's self-concept, which in turn impacted the parents'

ability to be emotionally present and intervene effectively with a child

Be sensitive to emotional reactions to ASD diagnosis. It is important to be

familiar with the diverse diagnosis reactions commonly experienced by parents A host

of different responses, such as devastation and guilt, can pervade a parent's earliest

experiences It should therefore be expected that parents in the early stages of looking for

and initiating an intervention for a young child with an ASD contend with complex

emotional reactions The diagnosis reactions will likely color the parents' initial feelings

about themselves and possibly impact their relative levels of facility with the model

Make space for a variety of emotions. Because of Floortime's implicit and

explicit emphases on fun, hope, and lively affect, it might be tempting for a clinician to

attend to positive emotional states to the exclusion of negative feelings, however, it is

important to pay close attention to parents' entire range of emotional experiences at every

stage of their Floortime use—not just during the early diagnosis period The importance

of feeling understood was routinely pointed out and underscored by parents in this study

Since most parents of children with ASDs experience a wide range of positive and

negative emotional reactions, it stands to reason that feeling understood means having all
emotions heard and known It is actually possible that parents who are struggling in

various ways might experience a clinician's largely positive focus as a failure of

attunement While optimism and levity are clearly important (multiple parents in this

study discussed how helpful the hope and energy of clinicians was), it is likely that a

clinician's accurate attunement is just as critical

Encourage parents to find own genuine way of doing Floortime By holding a

space open for all emotions, clinicians can send a message to parents that it is acceptable

to be who they really are Some parents in this study talked about how frequently they

felt disingenuous while doing Floortime, particularly when they had bad moods and

therefore felt they had to pretend to be happy and lively One parent complained that

Floortime coaching left her feeling like she needed to be someone other than her true self,

which in turn contributed to feelings of doubt about herself and the model Ultimately,

parents do best when they feel accepted They feel more genuine when they can inject

themselves into the treatment, so their uniqueness should be encouraged

Consider how your own attitude can influence parents' mental states. Be

mindful of the possible impact of your attitude on that of the parent, who tends to be

incredibly sensitive to the tone of your coaching and counsel Parents depend on

clinicians for insights into their children's futures, and they also look to them for

indications of how they are doing as parents and therapists Be aware that while some

parents are motivated by feedback and direction, others struggle with it Many parents

feel especially vulnerable and unsure about their parenting by the time they seek

treatment, and they grapple with feelings of failure or insecurity when they learn that the

ways they are naturally inclined to play with their children are not always the most
 170

effective Because parents can feel easily criticized when clinicians coach them, it could

be useful to check m with them occasionally about how well supported they feel and alter

one's stance accordingly In general, parents appreciate clinicians who empower them

and impart faith and optimism, especially in moments of doubt and dejection, or when a

child is stuck However, it is also important to be realistic

Remember that no two parents are the same. As much as the clinician must be

familiar with the child's unique learning profile and individual personality, he or she

must also attend to the parent's unique ways of learning and being in the world

It is important to be aware of the variability of learning styles among different

parents Some parents learn better by doing, others by watching clinicians demonstrate,

and others by reading or studying the underlying theory first Some are easily

overwhelmed by too much information and need to have material broken down into

manageable chunks Similarly, as previously mentioned, whereas some parents might

respond well to being coached, others might find it demoralizing or threatening It is

therefore important for clinicians to observe parents' styles and tailor interventions

accordingly Also keep in mind that a parent and his or her partner likely have different

aptitudes and learning styles In some cases, it might be necessary to work with each

parent individually One parent interviewed for this study was married to a man who

grasped Floortime more slowly than she did and also had far less background in early

childhood development In order to facilitate the husband's learning and avoid marital

discord that could have emerged had she tried to coach him herself, the mother arranged

for the husband to have his own sessions with their Floortime therapist
 171

It is important to be aware of the variability of personality types among parents

Also keep in mind that not all parents are equally compatible with the model It is

possible that individuals with well-developed capacities for play, high levels of tolerance

for ambiguity, and strong self-reflective capacities may be naturally well-suited for

Floortime, however, this does not mean that there are certain types of people who will

have effortless experiences, and it does not mean that others are inappropriate for the

model What it means is that in most cases, parents' personality styles demand attention

For instance, a parent with a serious, introverted demeanor may struggle with aspects of

the model that ask parents to be animated and uninhibited Be prepared to offer

emotional support and help parents adapt interventions and goals according to their

personal strengths

Avoid communicating "right way" mentality. Some parents interviewed for this

study were relieved when clinicians and others communicated a forgiving attitude about

the work On the other hand, they found the mentality that there is a "right way" to do

Floortime both intimidating and frustrating Some parents who habitually held

themselves to high standards seemed especially vulnerable to ideas that one must act a

certain way and use Floortime a specific number of times per day and week For the

most part, parents actually talked about feeling better about themselves and their work

after they had loosened their standards for themselves For this reason, clinicians might

wish to help parents temper perfectionism, feel motivated and satisfied more often, and

develop schedules and goals that are reasonable for each individual parent Above all,

clinicians should avoid propagating an attitude that there is a "right way" to do Floortime

and instead help tailor programs to the unique needs of individual families
 172

Help parents anticipate. Clinicians can help parents greatly by preparing them

for different stages and experiences It would be particularly useful early on to not only

anticipate possible child outcomes and goals with parents but also to help parents

anticipate their own emotional struggles In fact, it could be helpful for clinicians to

know about the different themes and trajectories described in this study Not only could

awareness of them help clinicians respond more sensitively to parents overall, but it could

also help them prepare new parents for what to expect down the road This could be

particularly useful for undecided or skeptical parents and for parents whose experiences

with the model are likely to be especially rocky

Do not overwhelm. Parents in the process of reconciling a child's diagnosis and

just beginning to implement an intervention program are prone to feelings of overwhelm

It is therefore critical that clinicians avoid contributing additional stresses and burdens

Many parents interviewed for this study talked about feeling overwhelmed when

clinicians set unattainable standards for them or when they dispensed too many readings

When parents were unable or unmotivated to read the handouts given to them by

clinicians, some felt tremendous guilt and other threats to their self-confidence In

contrast, parents tended to feel relieved when clinicians offered hands-on support,

explained concepts verbally, and demonstrated more frequently They also tended to

appreciate when clinicians used simple language and concepts to help reinforce basic

Floortime fundamentals

Respect the parent and the parent-child dyad. When a parent brings a child to

treatment, a clinician is likely to feel various internal and external pulls to treat the

individual child, the child is, after all, the identified patient or client However, it is
 173

important to remember that the child is one part of a larger system He or she already has

multiple relationships and at least one primary attachment relationship It may therefore

be helpful to think of oneself as treating relationships more so than individuals, which

would mean treating the child, the parent, and the dyad (and other units if multiple family

members are involved)

Respect the parent A clinician has a great deal of insight and experience to offer,

but respect for the parent is still essential While there might be a great deal that parents

do not understand about ASDs, they do bring a tremendous amount of knowledge about

their children, so think about collaborating with them as one would with any other expert

Always hold in mind the infant-parent dyad When parents begin using Floortime,

it is important to remember that their relationship with their children preexist the

treatment Therefore, during coaching sessions, consider the separate needs of the parent

and the child, but also treat them as a dyad with its own unique ways of relating One

parent interviewed for this study talked about how unhelpful it was when a clinician

worked almost exclusively with her child during sessions and failed to encourage

interaction in the dyad Because it is the parent who lives and interacts with the child on

a daily basis, the bulk of interventions ought to be aimed at supporting the relationship It

might be useful to speak to parents early on about the nature of the parent-child

relationship—for instance, what they most like to do together, particular strengths and

challenges, and the parents' overarching goals for the relationship Clinicians might also

ask parents how they feel about their children, about diagnoses, and about behaviors (e g,

self-stimulating behaviors, which can be off-putting or otherwise emotionally activating

for parents) Remember that the clinical setting might be the only place where some
parents can freely discuss their feelings about their children Acting as a receptacle for

parents' complicated feelings might free them up to be more emotionally available to

their children

Also remember that the parent brings to the dyad (and treatment situation) his or

her own unique set of childhood histories, transferences, and beliefs about what is

important in childhood These are useful to consider because they can help clinicians

predict and prepare for scenarios in the work that could be triggering for parents In

some cases, it may be useful to consider increasing the frequency of sessions or

augmenting the treatment with individual sessions for the parent If the professional is

not a mental health professional, referrals to therapists might be advised

Strengths and limitations of the study. This is the first known study to offer a

detailed picture of parents' experiences with Floortime The nuances and richness of

participants' accounts illustrate experiences that are not easily captured using quantitative

methods In fact, a major strength of this study was that its exploratory design produced

a wide variety of results that can be used to generate and guide future research

Furthermore, the results of this and future research can go a long way to improve the

experiences of parents and children who use Floortime

Despite the many strengths of this study, there are also a number of limitations

Most of the limitations pertain to the generalizabihty, or external validity, of the results

Whereas the small sample size made it possible to conduct in-depth interviews and

allowed for a detailed investigation into parents' experiences, the small number of

participants also makes it impossible to generalize results to a larger Floortime parent

population The homogeneity of participants' demographic characteristics also renders

 175

findings largely unrepresentative of a broader population For instance, of the eight

individuals who participated in the final study, all but one were mothers All participants

were parents of children with autism disorder or PDD-NOS, and all children functioned

at moderate to high levels Parents' cultural characteristics were also relatively non-

diverse Six of the eight participants were Caucasian, and two were East Indian Each

participant was in a heterosexual marriage with the child's other parent, and most male

spouses acted as the sole or primary breadwinner All identified with a religion, and all

tended to be well-educated and financially comfortable Although some parents

struggled more than others with financial and logistical challenges related to maintaining

their Floortime programs, all had at least the requisite resources necessary to

accommodate Floortime with at least one parent working outside the home only part time

or not at all

Although participants shared a number of similarities, there was also variability in

how each participant applied the model, such as the number of hours devoted to

Floortime each week Differences in frequency and duration of Floortime use could have

contributed to different outcomes and experiences for different parents The average total

time parents used Floortime ranged from 6 5 hours per week to 35 hours per week

Whereas most sessions lasted 20 to 30 minutes, one parent conducted 60-minute sessions,

and another extended them to 4 hours Parents also differed in how recently they used

Floortime While some parents still used the model at the time of their interviews, others

had not used it intensively for up to nearly 7 years Some parents had stopped using the

model in formal, deliberate ways but continued to use Floortime principles in regular

interactions with their children It is possible that parents who needed to reflect back
 176

longer than others may have had greater difficulty accessing memories and emotions, or

that their recollections could have been influenced by experiences that took place after

their children turned 5 years old In fact, it was often difficult to encourage some parents

of older children to focus on the time period prior to their child turning 5 years old

There are also limitations related to recruitment Although attempts were made to

recruit parents using a variety of methods (e g , word of mouth and flyer distribution), the

interested parents who used the model most intensively all learned about this study as a

result of postings on listservs that were dedicated to Floortime parents It is likely that

parents who regularly visit online forums are particularly motivated and enthusiastic

about the model In fact, a large number of responses from parents who learned about the

study online included references to feelings of gratitude and indebtedness to Floortime

and Stanley Greenspan Such sentiments point to the possibility that self-selection biases

influenced results Additionally, because recruitment criteria stipulated that participants

must have used the model for at least 1 year and favored parents who used the model

most intensively, the voices of parents who discontinued Floortime early on were not

represented Ultimately, a relatively small number of parents responded to recruitment

efforts, thereby limiting the researcher's freedom to be discerning about all recruitment

criteria Preference was therefore given to higher levels of treatment intensity over most

other variables For example, some parents interviewed for this study used a variety of

intervention modalities despite efforts to recruit parents who used Floortime exclusively

For this reason, it is difficult to tease out reactions to Floortime from reactions to

interventions in general
 Another limitation concerns data collection A large number of questions were

posed to parents in a relatively short interview period As such, the depth and length of

answers varied depending on how concisely and quickly parents spoke, along with how

well they stayed on topic A few parents seemed to regularly stray away from personal,

emotionally laden subject material in favor of topics like the concrete mechanics or

logistics of using Floortime There are a number of possible reasons why these parents

may have veered away from the study's central themes, such as general discomfort with

talking about feelings and the likelihood that parents of young children with ASDs may

be more focused about their children's experiences than their own Regardless, one

consequence was that some parents' voices were disproportionately represented in the

final results more than those of others

A final limitation relates to a credibility check that was performed by an

individual who shared demographic similarities with the participants (see the Methods

chapter for a more detailed description of the credibility check) The credibility checker

agreed with all findings except two interpersonal transformation and intrapersonal

transformation She hypothesized that because she was already particularly well

"oriented" to Floortime when she chose to use the model, it was unnecessary to change

who she was as a person This differed from a number of participants who reported both

a preexisting good fit with the model as well as changes in themselves and how they

related to others Since effects and changes were only one component of this study, and

because the credibility check points to a possible mconsistency, futher examination is

warranted
 178

Suggestions for future research. Relative to the large body of literature that

exists on behavioral models like ABA, the research on Floortime and other

developmental models is scant The model's effects on the parent are just one of many

specific aspects of the model that are understudied One consequence is that parents in

the process of seeking out appropriate treatment methods for then- children have access to

far less information and data about Floortime than ABA, a reality that likely influences

final decisions Another consequence is that clinicians have little more than their own

anecdotal experiences to guide them on how to most effectively support parents As

such, further research is suggested Future projects could either replicate this study with

changes or use its numerous findings as jumping off points for any number of other

meaningful studies

If this study is repeated in the future, a number of suggestions should be

considered It may be useful to consider using a larger sample size that is more

representative of the larger Floortime parent population For instance, it would be

informative to hear from parents who were dissatisfied with Floortime or dropped out of

treatment due to logistical, emotional, or other reasons It could also be illuminating to

sample specific types of parents for whom Floortime may have been relatively more

challenging For instance, research could gather the perspectives of single parents,

divorced parents, low-income parents, or families in which both parents must work full-

time or choose to work full-time Although many would argue that a successful

Floortime program is contingent on at least one parent staying home full-time, this study

seems to indicate that some families have adapted it with positive results, therefore, a

more detailed inquiry into effective adaptations would be valuable

 179

Another important area for future research involves level of functiomng It is

possible that this study overlooked an important parent population by only interviewing

parents of medium to high functioning children Multiple parents even hypothesized that

Floortime might have been a good fit in part because of his or her child's relatively high

functional skills It would therefore be useful to interview parents of lower functioning

children, as it is possible that parents would struggle more with children who exhibit

extreme regulatory problems that render basic engagement especially challenging

Of course, it is possible that the participants m this study were a fairly accurate

cross-section of the larger population If this were the case, it would make sense to

investigate potential reasons why Floortime either appeals more to or is easier to uphold

for some parents than others Ultimately, by knowing more about a broader range of

experiences, it is possible that Floortime outreach could be improved so that the model

might benefit more children

Results of this study were intended to be impressionistic rather than definitive,

future studies could encourage statistical strength by incorporating instruments that use

quantifiable measures and have been analyzed for sensitivity and reproducibility For

example, participants could be asked to complete surveys that measure factors like

personality characteristics, psychological well-being, and coping styles One possible

advantage of including analyzed tests and measurements is that they could reduce the

effects of researchers' biases on results

It would also be worthwhile to study different individuals' perspectives on the

parent's experience of Floortime For instance, a study could focus specifically on the

phenomenon of using Floortime from the father's point of view Studies could be further
 180

enriched by including clinicians' accounts of working with parents and asking them about

interventions that proved to be especially effective It would also be fascinating to

interview Floortime children about their experiences many years after intervention,

particularly about their recollections of working with their parents

Finally, it could be useful for future researchers to consider ways of minimizing

the transformative effects of memory on parents' accounts of their experiences by

employing a longitudinal study design In this study, due to the time delay between

participants' Floortime usage and their interview dates, perceptions of experiences were

likely altered from their original forms In future projects, parents could be interviewed

or surveyed at different points in the process, such as once during the early phase of using

the model, again at the middle point, and a final time at the one-year mark

Conclusions. Raising a child with an ASD is an intrinsically emotional

experience When the demands of a model like Floortime are added, parents are

challenged in new and different ways They can also be rewarded with great successes—

the love of a child who was once deemed unreachable, richer and more heartfelt

relationships, and extraordinary transformations in world-view, to name a few Parents'

well-being fluctuates at different points in the Floortime process, often peaking during

the early stages when diagnosis reactions are freshest and the learning curve is especially

steep Ups and downs persist over time, sometimes reflecting shifts in mood or

paralleling a child's unique rhythm of improvements and setbacks Some parents

struggle more than others as a result of different factors of goodness of fit, like how well

one's personality allows for playfulness, tolerance of ambiguity, and self-reflection

Ultimately, parents' well-being is greatly enhanced by the support of other people,

 181

including Floortime clinicians This exploratory study was the first of its kind to detail

the experiences of Floortime parents and the first to propose tentative guidelines for the

clinicians who work with them The study's findings have the potential to contribute to

the lives of children with ASDs and inform future research in this important area
 182

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 Appendix A: Acronyms

ABA Applied Behavioral Analysis

ASD Autism spectrum disorder

DD Developmental disorders

DIR Developmental, Individual Difference, Relationship-based

EIBI Early Intervention Behavioral Intervention

FEDLs Functional Emotional Developmental Levels

NAS National Academy of Sciences

PDD Pervasive developmental disorder

PDD-NOS Pervasive developmental disorder, not otherwise specified

PPHC PLAY Project Home Consultation

PRT Pivotal Response Therapy

 Appendix B: ASD Diagnostic Criteria

299 00 Autistic Disorder

A A total of six (or more) items from (1), (2), and (3), with at least two from (1), and
one each from (2) and (3)

(1) qualitative impairment in social interaction, as manifested by at least two of

the following

(a) marked impairment in the use of multiple nonverbal behaviors, such

as eye-to-eye gaze, facial expression, body postures, and gestures to
regulate social interaction

(b) failure to develop peer relationships appropriate to developmental

level

(c) a lack of spontaneous seeking to share enjoyment, interests, or

achievements with other people (e g , by a lack of showing, bringing, or
pointing out objects of interest)

(d) lack of social or emotional reciprocity

(2) qualitative impairments in communication, as manifested by at least one of

the following

(a) delay in, or total lack of, the development of spoken language (not
accompanied by an attempt to compensate through alternative modes of
communication such as gesture or mime)

(b) in individuals with adequate speech, marked impairment in the ability

to initiate or sustain a conversation with others

(c) stereotyped and repetitive use of language or idiosyncratic language

(d) lack of varied, spontaneous make-believe play or social imitative play

appropriate to developmental level

(3) restricted, repetitive, and stereotyped patterns of behavior, interests, and

activities as manifested by at least one of the following

(a) encompassing preoccupation with one or more stereotyped and

restricted patterns of interest that is abnormal either in intensity or focus
 (b) apparently inflexible adherence to specific, nonfunctional routines or
rituals

(c) stereotyped and repetitive motor mannerisms (e g , hand or finger

flapping or twisting or complex whole-body movements)

(d) persistent preoccupation with parts of objects

B Delays or abnormal functioning in at least one of the following areas, with onset
prior to age 3 years (1) social interaction, (2) language as used in social
communication, or (3) symbolic or imaginative play

C The disturbance is not better accounted for by Rett's disorder or childhood

disintegrative disorder
299 80 Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS)

This category should be used when there is a severe and pervasive impairment in the
development of reciprocal social interaction or verbal and nonverbal communication
skills, or when stereotyped behavior, interests, and activities are present, but the
criteria are not met for a specific pervasive developmental disorder, schizophrenia,
schizotypal personality disorder, or avoidant personality disorder For example, this
category includes "atypical autism" presentations that do not meet the criteria for
autistic disorder because of late age of onset, atypical symptomatology, or
subthreshold symptomatology, or all of these

299 80 Asperger's Disorder (or Asperger Syndrome)

A Qualitative impairment in social interaction, as manifested by at least two of the

following

(1) marked impairment in the use of multiple nonverbal behaviors, such as eye-
to-eye gaze, facial expression, body postures, and gestures to regulate social
interaction

(2) failure to develop peer relationships appropriate to developmental level

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements

with other people (e g , by a lack of showing, bringing, or pointing out objects
of interest to other people)

(4) lack of social or emotional reciprocity

B Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities,

as manifested by at least one of the following

(1) encompassing preoccupation with one or more stereotyped and restricted

patterns of interest that is abnormal either in intensity or focus

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

(3) stereotyped and repetitive motor mannerisms (e g , hand or finger flapping or

twisting, or complex whole-body movements)

(4) persistent preoccupation with parts of objects

C The disturbance causes clinically significant impairment in social,

occupational, or other important areas of functioning

D There is no clinically significant general delay in language (e g, single words used

by age 2 years, communicative phrases used by age 3 years)
E There is no clinically significant delay in cognitive development or in the
development of age-appropriate self-help skills, adaptive behavior (other than in
social interaction), and curiosity about the environment in childhood

F Criteria are not met for another specific pervasive developmental disorder or
schizophrenia
 Appendix C: Functional Emotional Developmental Levels (FEDLs)

Stage 1 Self-Regulation and Shared Attention (Interest in the World)

This initial stage focuses on harnessing all senses and motor capacities, to
help the child stay calm and regulated in order to draw him or her into
shared attention The adult involves the child in enjoyable interactions that
include looking (look at and examine faces), hearing (focus on voices),
touching (pleasurable tickles, stroking or sharing an object or a toy) and
movement Constructive and playfully obstructive strategies are used with
affect cues to stretch the child's capacity

Stage 2 Engagement and Relating

This stage involves encouraging the child to engage with pleasure as seen
when the child brightens, smiles, references (looks), moves, vocalizes or
reaches The idea is to encourage growth of intimacy and 'falling in love'
As the child develops, the relationship is deepened to include the full
range of feelings such as assertiveness, anger or sadness that can be
incorporated into the quality and stability of the child's engagement (e g
does he or she withdraw or become aimless under stress, does he/she stay
connected when angry or scared'?) Relationships are continually
emphasized to develop a sense of security, intimacy, caring and empathy
Relationships also support the hard work needed to develop motor
planning, language, and positive attitudes towards all new learning

Stage 3 Two-Way Intentional Communication

This stage involves following the child's lead and challenging him or her
to communicate through exchanges of gestures and emotional signals
about his or her affects (interests, needs or intentions) The adult is
animated and shows affect through tone of voice and facial expressions
This begins with a dialogue without words through subtle facial
expressions, a gleam in the eye, and other emotional signals or gestures,
and progresses to a dialogue with problem solving words Affect cues
(signals) are used to woo and wait for the child's purposeful social
gestures (facial expressions, making sounds, reachmg, pointing, throwing,
movement, etc) to express desires, objections or other feelings
Reciprocity is established by challenging the child to do things to the
adult, by helping the child achieve his or her goal and later build obstacles
to add steps A continuous flow is encouraged by opening and closing
multiple circles of communication A circle is opened when the child
exhibits some interest or initiates a behavior - e g the child looks at a toy,
and the parent or caregiver follows the child's lead by picking up the toy
and showing it to the child The child closes the circle by reaching for the
toy, while acknowledging (looking, smiling at) the parent

Stage 4 Purposeful Complex Problem Solving Communication

At this stage the adult and child work up to a contmuous flow of 30 or
more back and forth circles of communication - e g the child takes a
parent by the hand, walks her to the door, points to indicate that he/she
wants to go out, and perhaps vocalizes a sound or word to further signify
intentions The adult expands the conversation by asking where the child
wants to go, what he/she needs, who else will come, what they will get,
what else, how come, etc These conversations negotiate the most
important emotional needs of life (e g being close to others, exploring and
being assertive, limiting aggression, negotiating safety, etc)

Stage 5 Creating and Elaborating Symbols (Ideas)

This stage encourages the child to relate to sensations, gestures and
behaviors, to the world of ideas which can be shared in pretend play The
adult lets the child initiate the play idea and joins the child as a character
through dramatization in direct roles or using figures to elaborate themes
and expand the range of emotions (closeness, assertiveness, fear, anger,
jealousy, aggression, etc) which the child can explore and express safely
When feelings and impulses are elevated to the level of ideas, they can be
expressed through words - e g instead of hitting a friend, the child can
say, 'I'm mad' without acting out Play provides the distance from real life
and immediacy of needs to differentiate self from others through empathic
roles - e g the child pretends to be a mommy, comforting her frustrated
baby who broke his toy It is important to look out for polarizing or being
dominated by one or another feeling state (aggression and impulsivity,
needy or dependent behavior, fearful patterns, etc) The adult engages the
child in long conversations to communicate interests, feelings, desires and
objections throughout the day

Stage 6 Building Bridges Between Symbols (Ideas)

This stage involves challenging the child to connect his ideas together by
seeking his opinion, enjoying his debates, and negotiating for things he
wants using logical reasons The adult promotes pretend play, words,
and/or visual symbols to elaborate a partially planned pretend drama
(theme or idea is identified in advance), or engage in logical conversation
dealing with causal, spatial, and/or temporal relationships between themes
Recognizing when themes or ideas are fragmented, the child is encouraged
to 'make sense', with a beginning, middle and end where elements in the
drama logically fit together, motives are understood, and the child can put
himself in someone else's shoes The child is challenged to create
connections between differentiated feeling states - e g 'I feel happy when
you are proud of me'' Relationships (contingency) between feelings,
thoughts and actions are identified Differentiation of more subtle feelings
states (e g lonely, sad, disappointed, annoyed, frustrated) are expanded
This capacity is essential for separating reality from fantasy, modulating
impulses and mood, and learning how to concentrate and plan
 Appendix D: Recruitment Email/Letter

Hello,

I am a clinical psychology doctoral student at the Wright Institute in Berkeley and am

looking for volunteers to participate in my confidential dissertation study about the
experiences of parents who implement Floortime programs for their young children with
autism spectrum disorders

This is an exciting opportunity for individuals to share their stories and contribute to a
greater clinical understanding of how parents experience the Floortime model and how
professionals can effectively meet their needs Involvement will consist of the
completion of a brief demographic questionnaire and a 60-90 minute individual
interview

Minimal eligibility requirements

• Participants will be a parent of a child with an autism spectrum disorder
• Participants will have used Floortime consistently for at least one year with a
child who was under five years old at the time Floortime intervention began
(They do not need to have used the model recently)
• Participants will be willing to complete a brief demographic questionnaire and a
60-90 minute individual interview
• Participants will understand that they will not be compensated and that whereas
confidentiality can never be guaranteed, extensive measures will be taken to
protect it to the full extent of the law

If you know of individuals who fit this description and may be interested in participating
in my study, I invite you to contact me Alternatively, please feel free to forward this
email or pass along my contact information to potential participants If you work in a
school or agency, please consider posting the attached flyer in your offices

Thank you very much for your time and consideration

Best wishes,

Kathleen Coletti, M A

Phone -
Email -
 Appendix E: Recruitment Flyer

RESEARCH PARTICIPANTS NEEDED!

ARE YOU A PARENT WHO HAS EXPERIENCE USING FLOORTIME

WITH A YOUNG CHILD WITH AN AUTISM SPECTRUM DISORDER?

I am a clinical psychology doctoral student at the Wright Institute in Berkeley,

California and am looking for volunteers to participate in my confidential
dissertation study about the experiences of parents who implement Floortime
programs for their young children with autism spectrum disorders

This is an exciting opportunity for individuals to share their stories and contribute
to a greater clinical understanding of how parents experience the Floortime
model and how professionals can effectively meet their needs

You may be eligible if you:

• Are a parent of a child with an autism spectrum disorder

• Used Floortime consistently for at least one year with a child who was
under five years old at the time Floortime intervention began (You do not
need to have used the model recently)

You will be asked to:

• Review and sign a consent form (5 minutes), complete a brief

demographic questionnaire (15 minutes), and take part in an individual
interview (60 - 90 minutes)

• Understand that you will not be compensated and that whereas

confidentiality can never be guaranteed, extensive measures will be taken
to protect it to the full extent of the law

If you are interested in participating, or if you know of individuals who may be

interested in participating, I invite you to contact me

Thank you very much for your interest'

 201

Appendix F: Letter of Introduction

Dear Participant,

Thank you for your interest in participating in my research project I am conducting

interviews for a dissertation I am writing as a doctoral student in clinical psychology at
the Wright Institute in Berkeley, California My study is about the experiences of parents
who implement a Floortime program for a child with an autism spectrum disorder
Participants will complete brief forms (enclosed) and participate in an individual 60-90
minute audio taped interview If you choose to participate, you and I will schedule an
interview for a time and place that is convenient for you In the meantime, participants
will sign the consent form, answer the questions in the demographic questionnaire (which
should take no more than 15 minutes to complete), and bring the forms with them to the
interview Potential participants should consider the following

• If you participate in this study, your involvement will be entirely voluntary You
may withdraw from participation at any time, and you may decline to answer any
questions without being penalized

• Participants will not be compensated for their involvement, however they may
benefit from the experience of contributing to a better understanding of the topic
It is hoped that study findings will add to the existing body of knowledge about
parents' experiences of raising a child with an ASD and offer valuable insights to
clinicians who work with these families

• Many of the questions will ask parents to reflect on emotional experiences While
no known or anticipated risks are involved in participation, referrals to mental
health resources will be provided in case participants experience difficult
reactions as a result of considering the topic under investigation

• Although confidentiality can never be guaranteed, it will be protected to the full

extent of the law and to the best of the researcher's ability Extensive measures
will be taken to ensure that all identifying information is removed and/or
disguised to protect participants' identities In some cases, participants may be
quoted Only generic statements will be quoted, and/or names and details will be
expunged or changed to make the statements nonspecific Participants'
interviews will be audio taped and transcribed to ensure the accuracy and
completeness of information collected and that all sensitive interview content
Signed letters of consent (the only materials that will retain actual names) will be
stored in the locked confidential files of the Wright Institute's Committee for the
Protection of Human Subjects for two years and shredded thereafter The
researcher will store all other materials in a separate secure location to which only
she will have access, although it is possible that transcribers will be employed to
convert audio recordings to written transcripts, and one of the study's validity
measures will involve a transcript audit performed by an individual who is not the
researcher No identifying information will be included with the recordings or
 transcripts (upon receipt of participants' materials, names on demographic
questionnaires will be blacked out and replaced with pseudonyms and codes for
identification purposes The codes will be used to anonymously link
questionnaires to audio recordings and consent forms, and pseudonyms will
replace actual names in the results section of the dissertation), and sensitive
interview content will be held in confidence by the researcher and by anyone
employed to transcribe or audit the data These individuals will additionally be
asked to sign non-disclosure agreements After two years, the researcher will
shred and destroy the remainder of the materials

• You may contact me with questions about the study's purpose and/or for study
results following participation I can be reached by phone at H ^ ^ H or by
email at H H H H H I ^ I l You may also direct questions to my
dissertation chair, Beate Lohser, PhD, at 510-841-9230 The Wright Institute's
Committee for the Protection of Human Subjects has reviewed this project and
given it ethical clearance, and you may contact the committee at 510-841-9230 if
you have any comments or concerns

Thank you very much for your time and consideration I welcome any questions,
comments, or suggestions you may have

Sincerely,

Kathleen Coletti, M A
 203

Appendix G: Letter of Consent

I, , hereby authorize Kathleen Coletti, M A to gather

information from me for a dissertation research study being conducted in association with
the Wright Institute in Berkeley, California under the supervision of Beate Lohser, Ph D
I read the Letter of Introduction, and the nature of the study and my participation in it has
been explained to me I understand the following

• This is a study of the experiences of parents who implement a Floortime program

for a child with an autism spectrum disorder My participation will involve the
completion of a brief demographic questionnaire and a 60-90 minute interview in
which I will be asked a number of questions about my personal experiences with
the model

• My participation will involve only minimal risk to me beyond the possibility of

some mild emotional reactions involved in considering and responding to the
topic under investigation In the event that my involvement results in adverse
reactions, a referral list of local mental health professionals and support groups
has been provided to me

• My participation is voluntary and has not been gamed through coercion I will
not be penalized for declining to answer any interview questions If at any time I
wish to withdraw this consent, I may do so without penalty by contacting the
researcher

• Involvement will not result in any direct benefits to me beyond what might be
gained through the experience of participating in the study and contributing to a
better understanding of the topic

• Although confidentiality can never be guaranteed, it will be protected to the full

extent of the law and to the best of the researcher's ability Extensive measures
will be taken to ensure that all identifying information is removed and/or
disguised to protect my identity In some cases, I may be quoted, however, only
generic statements will be quoted, and/or names and details will be expunged or
changed to make the statements nonspecific My interview will be audio taped
and transcribed to ensure the accuracy and completeness of information collected
and that all sensitive interview content This signed letter of consent (the only
material that will retain my actual name) will be stored in the locked confidential
files of the Wright Institute's Committee for the Protection of Human Subjects for
two years and shredded thereafter The researcher will store all other materials in
a separate secure location to which only she will have access, although it is
possible that transcribers will be employed to convert audio recordings to written
transcripts, and one of the study's validity measures will involve a transcript audit
performed by an individual who is not the researcher No identifying information
will be included with the recordings or transcripts (upon receipt of my materials,
 204

all names on my demographic questionnaire will be blacked out and replaced with
a pseudonyms and assigned a code for identification purposes The code will be
used to anonymously link my questionnaire to my audio recordings and consent
form, and pseudonyms will replace actual names in the results section of the
dissertation) Sensitive interview content will be held in confidence by the
researcher and by anyone employed to transcribe or audit the data These
individuals will additionally be asked to sign non-disclosure agreements After
two years, the researcher will shred and destroy the remainder of the materials

• The nature and ethics of this project have been reviewed and approved by the
Committee for the Protection of Human Subjects at the Wright Institute(510-841-

S I may contact the committee, the researcher (Kathleen Coletti,

or k coletn@,hotmail com), or the dissertation chair, Beate Lohser (510-
841-9230), if I have any comments or concerns about participation If I have
H

questions about the purpose of the study and/or wish to request study results, I
may contact the researcher

Participant Signature Date

 205

Appendix H: Demographic Questionnaire

(Pg 1 of 3)

Interviewee Name (Will be blacked out by researcher)

(Will be completed by researcher)

Interviewee code / pseudonym: /

PARENT(S)

Parent #1 (interviewed) Parent #2 (spouse, if applicable)

Interviewed7 yes / no Interviewed7 yes / no

Circle one Mother / Father / Other (explain) Circle one Mother / Father / Other (explain)

Age- Age-

Current Current

At birth of child At birth of child

Gender Gender

Relationship status Relationship status

Education level Education level

Occupation Occupation

Ethnicity Ethnicity

Religion Religion

City of residence City of residence

Other parent demographic notes

 206

(Pg 2 of 3)

(Will be completed by researcher) - ^

Interviewee code /pseudonym: /

CHILD

Name

(Will be blacked out by researcher and assigned a pseudonym)

Current age (DOB)

Current grade (if in school)

Diagnosis -

When?

What diagnosis?

Circle one PDD-NOS / Asperger's / Autism Disorder / other (explain)

Where would you place him/her on the spectrum as far as level of functioning?

Circle one low / medium / high / other (explain)

How was he/she diagnosed?

Is he/she your biological child? Adopted? Other? (explain)

Other than parents, who else lives at home with the child?

Please list age and relationship to child

If he/she is your biological child, are there any other family members with an ASD?

If so, please list age and relationship to child

Other child demographic notes

 207

(Pg 3 of 3)

(Will be completed by researcher)

Interviewee code /pseudonym: /

DIR/FLOORTIME:

When did you begin using FT 9 End9

How old was the child when you began FT 7 Ended7

Which other interventions did you try, if any9 (explain)

Did you and your child have an FT therapist/treatment team9 (explain)

Besides you, which other family members are/were involved in the child's treatment9

How did you learn to use FT (e g , trainings, readings, professional collaboration, conferences)9

Where did sessions typically take place9

What was your average FT schedule like9

Average number of sessions per week sessions

Average length of sessions minutes

How long FT was used intensively (25+ hours/wk) months total

Other Floortime experience notes

 Appendix I: Referral List (local)

The following is a list of referrals to psychological services, parenting-related services,

and other resources Many agencies listed offer parenting groups and other services
targeted at specific populations that may apply to you If you have questions or would
hkeadditional referrals^pleasecontactdieresearcher, Kathleen Coletti, at | [ | ^ ^ H
| ^ | or by email at ^ I H H I H l She will be happy to help you find
appropriate services in your community

Resources for parents with children with ASDs and other developmental challenges:

The Family Resource Centers Network of California (FRCNCA) is a hub of

resource centers that provide access to early intervention services for children
with (or at risk of developing) developmental disabilities and offers support to
parents and families in a variety of forms and capacities The website
www frcnca org provides links to the state's numerous resource centers A
complete directory of all FRCNCA resource centers can be obtained from the
researcher upon request or found at http //www frcnca org/drrectorv2005 pdf

The Family Resource Network of Alameda County (www frnoakland org,

(510) 547-7322) is an extensive directory of services and information for families
of children with disabilities in Alameda County (in English and Spanish) A copy
can be requested from the researcher, or it is available online at
http //www frnoakland org/downloads/DirectorvVol7 pdf If you do not live m
Alameda County, similar directories for your area should be accessible through
your region's resource center

If you live in Napa, Solano, Sonoma, Marin, Contra Costa, San Francisco,
Alameda, or San Mateo http //www frcnca org/region3 html

If you live m Santa Clara, San Benito, Santa Cruz, or Monterey

http //www frcnca org/region4 html

If you live in Colusa, Sutter, Yuba, Alpine, El Dorado, Nevada, Placer,

Sacramento, Yolo, Amador, Calaveras, San Joaquin, Stanislaus, or Tuolumne
http //www frcnca org/region2 html

If you live in Madera, Mariposa, Merced, Fresno, King, Inyo, Mono, Tulare, or
Kern
http //www frcnca org/region6 html

Another helpful agency that provides support groups and other parenting services
is Support for Families of Children with Disabilities at (415) 282-7494

General parenting concerns and advice lines:

 Parents' Place
www ParentsPlaceOnhne org
San Francisco (415) 359-2454
Palo Alto (650) 688-3040
San Mateo (650) 931-1840
San Rafael (415) 491-7959
Santa Rosa (707) 571-2048

Talk Line (Telephone Aid in Living with Kids)

415-441-5437

Psychological services:
The following organizations offer adult (and in many cases, also children) psychological
services on a sliding scale or at no fee with MediCal

East Bay -
Ann Martin Children's Center
(510)655-7880

Through the Looking Glass (parents &/or children with disabilities,

takes MediCal)
(510)848-1112

Wright Institute Clinic

(510) 841-9230

San Francisco -
Access Institute for Psychological Services
(415) 861-5449

California Pacific Medical Center - Outpatient Mental Health Clinic

(415)600-3247

UCSF Infant-Parent Program (parents & their children zero-to-three,

takes MediCal)
(415)206-5270

Floortime-specific hstservs for parents:

Floortime Repository
http //www floortimerepository com

Floortime Yahoo Group

floortimers-subscnbe@yahoogroupscom
 Appendix J: Referral List (national)

In the unlikely event that you experience difficult emotional reactions as a result of
participating in this study, please see the following list of referrals to psychological
services, such as parenting-related services and resources that will help you find support
in your area If you have questions or would like additional referrals, please contact the
researcher, Kathleen Coletti, at I H I H I H I o r by email at jk_coletti(g),hotmail com|
She will be happy to help you find appropriate services in your community

Parenting Support

Talk Line 415-441-5437

Help Finding a Therapist

Call 1-800-THERAPIST (1-800-843-7274)

-or-

Go to http //therapists psychologytoday com/rms/

In Crisis? Call

Hope Line Network 1-800-273-TALK

 211

Appendix K: Nondisclosure Agreement (for transcribers and auditors)

I, , understand that the materials I have received must be

kept confidential To ensure the protection of participants' identities and personal
information, it is agreed that I will not share, retain, or duplicate the materials, and I will
not disclose any information in any circumstances When my role in this project is
complete, I will return materials in person to the researcher, Kathleen Coletti She can be
contacted at I ^ ^ I ^ ^ H H or by email at k coletti@,hotmail com with questions or
concerns

Transcriber/Auditor Signature Date

 Appendix L: Interview Schedule

INTRO - Thank you for agreeing to talk with me As you know, the aim of my study is
to develop an in-depth account of a parent's experiences implementing a Floortime
program for a young child with an autism spectrum disorder I will be asking you a
number of questions about how your experiences with the model have affected you on a
personal level I am mterested in details, so please don't be afraid to tell me as much as
you feel comfortable sharing At times, I may prompt or redirect you in the interest of
getting to all of my questions in the time we have today Do you have any questions9

(Review terms of the Letter of Consent and explain measures to protect confidentiality
Remind participant how to contact individuals involved in the study, such as the
researcher and the Wright Institute CPHS, should questions or concerns arise Offer
participant contact information for resources, such as names and phone numbers of
relevant local support groups and mental health clinicians in case the interview elicits
emotional reactions for which the participant wishes to obtain professional support)

A Introductory Questions

1 a Why don't you start by telling me a little bit about you, your family, and
your child9

• Prompts
o Your family background9 Your culture9

b I would like to ask you to think about yourself prior to your child's
diagnosis How would you describe yourself back then9

• Prompts
o Your temperament back then9 Your relational style9 Your
values9 Your well-being9 Your sense of self9

2 What was the time around your child's diagnosis like for you 9 How did this
differ from the time prior to the diagnosis9

• Prompts
o How did you feel about your child's diagnosis9 His/her
symptoms/behaviors (e g , deficits in reciprocity)9

3 Could you tell me about your original decision to use Floortime9

• Prompts
o What drew you to it 9
o Why you ultimately chose it over other interventions9
 213

B Process

4 What were your early experiences with the model like"?

• Prompts
o Learning it9
o Using it?
o What were those experiences like for you on an emotional
level?

5 Now could you describe your experiences with the model over time (after the
early period)?

• Prompts
o Continuing to learn it?
o Using it?
o What were those experiences like for you on an emotional
level?

6 Could you explain some ways you think your feelings about your child's
diagnosis and symptoms/behaviors (e g , deficits in reciprocity) impacted your
experiences using the model?

7 Could you explain some ways you think aspects of who you are impacted
your experiences with Floortime?

• Prompts
o Your family background? Your culture?
o Your temperament? Your relational style? Your values? Your
well-being? Your sense of self?

8 a Were there aspects of the model you found more challenging to adapt to
than others? Easier to adapt to?

• Prompts
o Why do you think some elements were harder or easier for you
to adopt than others?
o How did you cope with the adaptations and challenges?

b How did these adaptations (the challenging ones and the easier ones) affect you
personally?

• Prompts
o Your well-being?
o Your feelings about your self (identity/self-concept)? The
model? Your performance?
 214

C Effects

9 Do you think there were times when you had particularly positive or negative
effects on your child's progress9 Explain how these related to your emotional
state, energy level, etc at the time

10 Looking back, what do you think were some of the long-term benefits and
consequences of implementing Floortime9

• Prompt
o For your chilcP
o Personal/emotional benefits and consequencesybrjyow9

11 In what ways do you think using Floortime influenced any changes in who
you are today9

• Prompts
o Your temperament9 Your relational style9 Your values 9 Your
well-being9 Your sense of self9

12 In what ways do you think using Floortime affected your relationship with
your child9 Your relationships overall9

D Goodness of Fit

13 a In what ways do you think you were or were not well suited for Floortime9

• Prompts
o Was it the right intervention for you and your family9
o Why or why not 9

b What kinds of parents do you think would be the best suited for the model 9

E Support Needs

14 What would you want clinicians and other parents to know about the model 9

15 I would like you to think about your experiences with professionals (e g ,

therapists, occupational therapists, physical therapists) who coached you on
how to use Floortime with your child What was helpful9 Unhelpful9

• Prompts
o Could you describe some times when you felt especially
supported or unsupported emotionally9
 215

o How could your emotional reactions have been better

supported at various phases7

16 Is there anything else about your Floortime experience you would like to tell
me about that wasn't covered in my questions9
 216

Appendix M: Coded Transcript Example

ID (Step 3) (Step 2) (Step 1)

Code Cluster Emergent Themes Transcript Preliminary Notes

502 Interviewer (Question 4) Could

503 you tell me a bit about what your
504 early experience with the model
505 was like''
506
505 21 39
506 2 Early Process - S Um, it was very reassuring It - Early experiences
507 Learning (reassuring was, for me, it just made sense were reassuring
508 and easier when (said slowly and emphatically) for - It just made sense
509 intuitive) all of the reasons I already
510 explained And um [the therapist]
511 would come to the house twice a
512 week and eventually—well
513 maybe from the beginning—or it
514 might have been a little later on—
515 we would do one session at the
516 house and one at her office so that
517 he would have another
518 environment And so the first
519 2 General Process - thing that—the most reassuring - Reassuring b/c it was
520 Progress is rewarding thing was that you just meet him respectful, intuitive,
521 (pivotal early on) where he's at, and that's okay and worked quickly
522 And then expanding that sensory
523 window It was very respectful of
524 him And it took no time when
525 you know how to meet a child at
526 their level and respect their
527 sensory system, it doesn't take a - Early rewards -
528 lot of time to start to get that kind interaction and
529 of engagement and interaction engagement
530 You know then you're building
531 on that to make it consistent and
532 then building on that
533 developmental ladder, but just to
534 2 Early Process - know that there were skills and - Helpful b/c FT
535 Learning strategies that I could use, just to offered tools
536 immediately start to get that kind immediately
537 of engagement, you know, those
538 were times when I didn't have - Therefore anxiety-
539 anxiety And it propels you to reducing and
540 keep doing more and more motivating
541 Floortime So, those early
542 months were really learning from
543 [child] about his sensory
544 system—why from you know I
545 didn't understand some of the