Function & Disability Journal

2024, Volume 7

Research Paper
The Resilience and Lived Experiences of the Parents
of Children With Autism in India: A Mixed-method
Study
Minitta Maria Regy1* , Vijaya Lakshmi2 , Deepthi N Shanbhag3

1. Department of Medical Sciences, National Institute for Empowerment of Persons with Multiple Disabilities, Chennai, India.
2. National Institute for Empowerment of Persons with Multiple Disabilities, Chennai, India.
3. St John's Medical College, Bangalore, India.

ABSTRACT
Copyright: © 2024 The
Author(s). This is an open Background and Objectives: Families dealing with autism spectrum disorder (ASD) children try
access article distributed under to adapt with different strategies. 1) To assess the resilience of parents dealing with children having
the terms of the Creative ASD and its associated factors. 2) To explore the perspective and strategies of families dealing with
Commons Attribution License,
children having ASD
which permits unrestricted use,
distribution, and reproduction Methods: This was a mixed-methods study done over a period of 3 months among parents
in any medium, provided the having children diagnosed with ASD; undergoing institutional therapy for more than 6 months in
original author and source are duration. Data collection was done using the PREQ questionnaire and key informant interviews
credited.
(KII). Informed consent was taken prior to each interview and audio recordings. Relevant tests of
significance and deductive analysis followed.
Results: There was an equal divide observed between the low (50%) and high resilience (50%)
groups. Binary logistic regression showed that the upper socio-economic class showed higher
odds of better resilience (OR=4.038, 95% CI, 2.857%, 4.894%) as compared to the lower socio-
economic class, and those with higher levels of education showed better resilience (OR=9.903,
95% CI, 2.502%, 3.483% than the lesser educated. KII explored different perspectives on personal
experiences, concerns, challenges, attitudes, etc. where both perspectives such as benefits and
hardships were addressed on an individual as well as a family basis, respectively
Article info: Conclusion: Education and socio-economic backgrounds played a role in mending the resilience
Received: 15 May 2024 and other active measures such as peer support mechanisms and self-coping strategies also
Accepted: 29 Jul 2024 influenced the attitude and improved determination of parents dealing with children having ASD.
Available Online: 25 Sep 2024 Keywords: Autism spectrum disorder (ASD), Parents, Resilience

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Cite this article as Regy MM, Lakshmi V, Shanbhag DN. The Resilience and Lived Experiences of the Parents of Chil-
dren With Autism in India: A Mixed-method Study. Function and Disability Journal. 2024; 7:E310.1. http://dx.doi.org/10.32598/
fdj.7.310.1

* Corresponding Author:
Minitta Maria Regy
Address: Department of Medical Sciences, National Institute for Empowerment of Persons with Multiple Disabilities, Chennai, India.
Tel: + 91 (99) 62645330
E-mail: miniregy6@gmail.com

1
 2024, Volume 7

What is “already known” in this topic:

The parents of children with autism spectrum disorder are expected to experience social challenges more than
physical concerns, which thereby reflects on their self-esteem, motivation for daily activities or nurturing resil-
ience and various adaptive behaviors.

What this article adds:

Half of the parents of children with autism in India have low resilience. The educational level, occupation, and
socio-economic status of these parents can predict their resilience. Peer support and coping strategies influenced
the attitude of these parents.

Introduction ily resilience and parental stress in families with a child

A
diagnosed with ASD, thereby it was important and rele-
utism spectrum disorder (ASD) is a range vant to explore the perspectives from a caregiver’s point
of developmental disorders which is pri- of view towards dealing with such children so that we
marily characterized by impairments in may be able to plan initiatives to improve care and facili-
social, communication and cognitive skills tate well-being of both, the child as well as the parent or
along with restricted and repetitive patterns caregiver, respectively. This study mainly aimed at two
of behaviour, interests, or activities [1]. Resilience is a aspects, being:
dynamic process at any level of functioning that encom-
passes the capacity by which these individuals adapt 1) To assess the resilience of parents dealing with chil-
positively following adversity [1, 2]. dren having ASD and its associated factors; 2) To ex-
plore the perspective and strategies of families dealing
The parents of children having ASD are expected to ex- with children having ASD.
perience social challenges more than physical concerns,
which thereby reflects on their self-esteem, motivation Materials and Methods
for daily activities or nurturing resilience and various
adaptive behaviors doesn’t come with ease, thereby This was a mixed-methods study done over a period of
measures such as continuous reinforcement, peer sup- 3 months (April 2023 to July 2023) among parents hav-
port initiatives and self-healing measures contribute as ing children <6 years of age who were diagnosed with
methods of consideration in view of individual level ASD and undergoing institutional therapy for >6 months
of mental health and consequently the bearing of their in duration. The study setting was at National Institute
child’s care and progress [1]. for Empowerment of Persons with Multiple Disabilities
(NIEPMD), Chennai which is run under the Ministry of
The quality of life, in case of parents with special chil- Social Justice and Empowerment, Government of India.
dren, is greatly a focus of concern as it relies on multiple For the quantitative part of the study, a cross sectional
aspects which all ultimately revolves around the care of study methodology was followed and purposive type of
the child; the support system in terms of family, rela- sampling was done. Sample size was calculated using
tions, finances, health, etc are various areas which con- the Equation 1:
tribute towards the greater question of parental resilience
and self-help measures [2]. 1. z2pq/d2

Thereby, to address the need for this study, families of , where p=0.23, Poovathinal et al. (2016) [3],. q=99.7
children with ASD experience an appreciable amount of and d=3(d2=9) Therefore, calculated sample size=9.78,
stress relative to other families. Reasons begin with lim- Rounded off to 10 (estimated sample size). The quantita-
ited awareness to misconceptions and may even result in tive data was collected using the parental resilience ele-
hesitant and non-supportive decisions at an individual, ments questionnaire (PREQ) [4] which is a self-reported
familial or community level. To date, little research has scale that consists of 16 questions assessed by a Likert
examined the relationship between social support, fam- scoring and graded from a score of 0 to 4. It analyses

2 Regy MM, et al. Building Bridges: Resilience and Autism. Func Disabil J. 2024; 7:E310.1.
 2024, Volume 7

the outcome of parental resilience in the context of child Qualitative data

welfare mainly looking at areas such as coping and prob-
lem-solving, self-efficacy, social support and meaning- The qualitative data was done in the form of KIIs and
fulness under the broad umbrella of 3 sections, namely: the respondents included-parents, special education
Knowledge of child’s characteristics, perceived social teachers, paediatrician/developmental doctor, clinical
supports and positive perception of parenting. The total psychologists, occupational therapists, speech/language
score for the PREQ was taken as the sum of all scores for pathologists and early interventionists. Each interview
the 3 factors and the mean value was noted as the cut off, was recorded with consent and a deductive analysis was
below which was it was considered as low resilience and done for the same, following which suitable themes were
above which it was taken as high resilience, respectively. structured as listed below:
The qualitative data was collected in the form of key in-
formant interviews (KII) using a topic guide, with each 1) Events and elements of experience; 2) Concerns and
interview lasting for 15-20 minutes, respectively. KIIs criticality; 3) Being and beyond; 4) Fine line between
were taken from parents, special education teachers, pae- faith and fate; 5) Pave the way.
diatrician/developmental doctor, clinical psychologists,
occupational therapists, speech/language pathologists Most of the interviews had one view in common, being
and early interventionists. Informed consent was taken “despite ASD being the common connecting diagnosis,
prior to each interview and audio recordings. the presentation of every child affected with the same
varies from one another. It is indeed unique in features
Data analysis was done using Microsoft Excel and with only maybe a few common signs as such”. The lon-
SPSS software, version 21 using appropriate statistical gest interview time were spent with the developmental
tests of significance interpreted using tables and figures paediatrician and the speech therapist, both who high-
for the quantitative part and for the qualitative part, after lighted the importance of follow up as a big mandate for
using the narrative data for a grounded theory approach, such children undergoing therapy.
a deductive analysis was done with the help of themes
which were then further elaborated. Theme 1: Events and elements of experience

“I have been in this field of disability over 30 years and

Results
probably have seen over 5000 cases of ASD. The pat-
terns are increasing as compared to the previous years
Quantitative data: The total number of study partici-
and this could be taken a good thing (considering more
pants were 10 and the mean age was 39±10.5 years. The
awareness) as well as a difficult thing (considering the
sociodemographic profile is given under Table 1. Certain
rise in number of cases)” (KII 1, developmental paedi-
questions in specific to the child’s condition were also
atrician). The prevalence of ASD is higher today, both
asked (Table 2) where it was found that among the total
globally as well as nationally; with more preponderance
10 cases, 6 of them were diagnosed before the age of 3
among male as compared to females. The rising number
years and majority (9 out of 10) did not have any signifi-
of cases could not only be due to a multi-factorial reason,
cant family history with respect to their condition. The
but it could also be due to the increased awareness in
outcome variable, parental resilience, was calculated us-
present times about such developmental conditions.
ing the PREQ scoring and an equal divide was observed
between the low and high resilience group among our
“As compared to earlier times, we see parents bring
study respondents (Table 3). A further analysis was done
their children to us as early as 8 to 9 months of age to
in the form of bivariate analysis and logistic regression,
2 years and above; which is unusual as far as the previ-
(as shown under Tables 3, 4 and 5) and it was found that
ous times were considered. But I feel it is a good thing
those who were gainfully employed had a higher odd of
that they come to us early, as it helps us detect the prob-
better resilience (OR:2.645, 95% CI, 0.465%, 3.126%)
lem earlier and intervene sooner thereby giving the child
as compared to those who were homemakers. Similarly,
more time for therapy and rehabilitation to his/her high-
those who were among the upper socio-economic class
est function of ability” (KII 2, early interventionist).
showed higher odds of better resilience (OR:4.038, 95%
CI, 2.857%, 4.894%) as compared to those belonging “Earlier, not many knew about Autism. So, finding
to the lower socio-economic class and those who with about this condition during childhood was rare. And this
higher levels of education had higher odds of better re- is why initially, Autism related to a form of childhood
silience (OR:9.903, 95% CI, 2.502%, 3.483%) as com- schizophrenia. But now due to better awareness and
pared to those who were less educated, respectively.

Regy MM, et al. Building Bridges: Resilience and Autism. Func Disabil J. 2024; 7:E310.1. 3
 2024, Volume 7

Table 1. Socio-demographic profile of study participants (n=10)

Variables Sub-category No. (%) Mean±SD

Age (y) ≤40 7(70)

Mean age (y) >40 3(30) 39±10.5

Male 1(10)
Gender
Female 9(90)

Married 6(60)

Commitment Separated 1(10)

Widow/Widower 3(30)

Illiterate 1(10)

Middle school 1(10)

Highest level of education High school 1(10)

Graduate 3(30)

Post graduate 4(40)

Homemaker 8(80)
Occupation
Gainfully employed 2(20)

Lower class 3(30)

Socio-economic classification
(modified BG Prasad 2021)
Upper class 7(70)

Yes 9(90)
H/o persisting stress
No 1(10)

more studies, it has been framed under the spectrum of Mostly, the areas concerned with ASD children in-
ASD and a multi-disciplinary approach has been sought clude-cognition, speech and social skills. It is these
as a part of therapy” (KII 3, clinical psychologist). which make the parents notice the deviant behaviour and
bring to the notice of the therapist.
Mostly the interview respondents gave a comparative
response to the question pertaining to increased number “When parents ask us the questions, ‘‘Will my child get
of ASD cases. They related it largely to the fact of “bet- cured?’ It gets very difficult to explain about the inten-
ter awareness” which thereby led to “early detection or sity of the condition. Also, to prepare a parent for such
suspicion”. long-term measures, it is often worrying” (KII 2, Early
interventionist).
Theme 2: Concerns and criticality
The scenario of dealing with ASD children, both from
“One of the prime concerns from my side, that which the family side as well as the therapist side, gets taxing
I have repetitively encountered while dealing with chil- after a while due to the requirement of consistent, long-
dren having ASD is that, they do no have any intent to term measures for approach in different aspects. Not
communicate. Thereby it makes it very difficult to break many would be willing to hold on their strength for that
that limitation and try training them for basic speech ini- long a time which makes them give up and neglect be-
tiations” (KII 4, speech/language pathologist). yond a certain period.

4 Regy MM, et al. Building Bridges: Resilience and Autism. Func Disabil J. 2024; 7:E310.1.
 2024, Volume 7

Table 2. Results pertaining to child’s condition (ASD) (n=10)

Variables Sub-category No. (%)

<3 2(20)
Age of child (y)
≥3 8(80)

1-3 6(60)
Age at which child was
diagnosed with ASD (y)
≥3 4(40)

Yes 5(50)
Does the child have siblings?
No 5(50)

Yes 1(10)
Family history of ASD or other DD
No 9(90)

<1 3(30)
Duration of therapy for ASD (y)
≥1 7(70)

“How long will they have to be dependent? What will “My in-laws have disowned me and my child from the
happen to them after I die? Will all these therapy ses- moment they knew he is not a normal child. They blame
sions help them live alone tomorrow?” (KII 5, parent of it on me and my pregnancy care. My husband does not
child with ASD). seem to object their opinions, but I do not feel wrong on
his part. They are his support system just like I am for my
Most of the parents who were accompanying the chil- child. I can raise my child alone. This is my destiny; I am
dren for therapy were either mothers or grand-parents. accepting it. If my husband does not want to be a part of
Very few fathers were found to be present with the child this, I will not force him. At least he is earning on behalf
for therapy. This could be due to various reasons such of us and helping me take care of my child. At this point,
as –earning member of the family, work needs, abandon- I do not think I should expect any further from anyone.
ment, and more. That is life” (KII 5b, parent of ASD child).

With respect to this, when asked about the “support sys- The shaping of resilience was differently structured for
tem” a parent replied: different individuals. Some of them had a good support
system, while the rest were going forward with the best
“We were both working when we got married. Once they could. Some of them reported gaps in their care,
I had a child, I took a break. But he continued pursu- questioned themselves; while some of them resorted to
ing his work. Now that we know our child is not well, I accepting their circumstances and pushing through.
have completely resigned from work and dedicated my
whole time for my child. I do not see that effort from my Theme 3: Being and beyond
husband’s side. Is it wrong to expect him to try as well?”
(KII 5a, parent of ASD child). “Some children might not be good in academics, but
they might be gifted otherwise. Like for example, we
However, to the above response, another parent had a have a child in our class who is very good at art. He can
different perspective, which was as follows:

Table 3. Percentage distribution of resilience assessment (n=10)

PREQ Outcome No. (%)

Low resilience 5(50)

High resilience 5(50)

Regy MM, et al. Building Bridges: Resilience and Autism. Func Disabil J. 2024; 7:E310.1. 5
 2024, Volume 7

Table 4. Results of bivariate analysis (n=10)

Resilience
Variables Sub-category P*
Low High

≤40 3 4
Age (y)
0.490
Mean age (39±10.5)
>40 2 1

Male 0 1
Gender 0.280
Female 5 4

Married 2 4

Commitment Single 1 0 0.368

Widow/widower 2 1

Illiterate 1 0

Middle school 1 0
Highest level of
High school 1 0 0.036
education
Graduate 1 2

Post graduate 1 3

Homemaker 5 3
Occupation 0.014
Gainfully employed 0 2

Socio-economic Lower class 3 0

classification (modified 0.038
BG Prasad 2021) Upper class 2 5

Yes 5 1
H/o persisting stress 0.294
No 0 4

Chi square test.

*

Table 5. Results showing analysis of logistic regression (n=10)

Resilience
Variables Sub-category
Odd’s Ratio 95% CI P

Homemaker 1 - -
Occupation
Gainfully employed 2.645 0.465-3.126 0.07

Lower class 1 - -
Socio-economic class
Upper class 4.038 2.857-4.894 0.019

Illiterate 1 - -

Middle school 3.241 1.783-3.567 0.561

Highest level of
High school 2.693 1.980-2.899 0.326
education
Graduate 2.866 2.688-3.574 0.034

Post graduate 2.903 2.502-3.483 0.018

6 Regy MM, et al. Building Bridges: Resilience and Autism. Func Disabil J. 2024; 7:E310.1.
 2024, Volume 7

colour very well and he is very skilled in clay modelling. strong so that it will help them reflect the same” (KII 1,
So, we have counselled his parents to train him on such developmental paediatrician).
aspects instead of forcing him to study. He is channelled
in a unique way, so it is up to us to shape it accordingly” In our quantitative findings, we found that 9 out of the
(KII 6, special educator). 10 respondents reported to have history of stress dur-
ing pregnancy and when probed further, they reported
“Like us, some parents have tried putting their child stress in terms of familial issues, financial burdens, and
in inclusive schools, but have come back reporting that other inter-personal relationship issues. Before we could
other parents of children attending the same school com- counsel, most of them are already blaming themselves
plain that it is difficult for their child to be in the same and feeling accused for the child’s outcome. In many
class as a special child. These children may make inap- a case, it is true that stress plays a big role in affect-
propriate sounds or show difficulty in sitting tolerance. ing the growth and development of a child. However,
All these might also disturb the teacher while trying to this does not act as a sole reason for a healthy devel-
guide a class in unison. So not all schools may be ori- opment. There are several other reasons contributing to
ented enough to handle varied children, but it is up to the child’s well-being, which includes the immediate en-
the parents to be counselled about the same and shift to vironment, peer attention, care, good nourishment, etc.
easier and less burdensome options in such cases” (KII
5, parent of ASD child). “Initially I used to feel bad when my in-laws blame
me for my child’s state, but now after coming here, af-
The biggest challenge arises when our expectations do ter meeting so many other mothers, I know it is not my
not match with the outcome. The acceptance is yet an- fault” (KII 5c, parent of ASD child).
other worry. Most of all, along with child therapy, parent
training programmes are also required which is incor- “I was not keeping too well during my pregnancy time.
porated in form of counselling, awareness programmes, I had stress, both physically as well as emotionally. But
peer interaction and follow up visits. what made me feel helpless is when my family told me
to bear it all. Now even if I have trouble, I know I am
“Very often, we see ASD children struggle with certain alone and I will have to deal with it” (KII 5b, parent of
sensory issues. Like they avoid a particular texture, or ASD child).
they engage constantly in a specific activity. Such behav-
iour requires dedicated sensory integration therapy. Most Antenatal stress was a common finding among most
parents do not know about this, so we need to re-assure mothers, however the reason and response to the same
them and help them sustain what we teach to be repeated varied. While some mothers felt helpless, most of them
at home regularly” (KII 7, occupational therapist). developed a sense of individuality and courage to work
a way around their situation. Not all had a supportive
The therapist spends probably 30 to 45 minutes per environment, but with the little support they have, they
child for a maximum duration of 3 days a week. The felt adequate.
remaining days, the child is at home with their care-tak-
ers. So, it is necessary for the therapy to be sustained at In an environment such as a common institute for
home, as well. This is why, during therapy, it is good if therapy, the mothers and care givers find solace in each
the parents or care-takers also spend time observing and other’s company. They know each other’s story and they
facilitating the session. This makes them more prepared often step up in terms of care and support for them and
and confident, rather than being dependent on an exter- the children. Every time a new parent comes, this atti-
nal source of aid for the same. tude helps spread positivity to some extent and thereby
helps in accepting their situation as their new normal and
Theme 4: Fine line between faith and fate coping with the same.

“I can recall some parents who bring their child with Them 5: Pave the way
so much of self-blame and guilt. They would have un-
dergone stressful situations during pregnancy that they “We are worried when he does not attempt to commu-
feel blamed when the child is differently-abled. But I tell nicate fluently. We fear that if something harmful hap-
them all, the best way to handle this is first to accept and pens to him, we will never know. More than anything,
then to try best to avoid further stress. Often children we want our child to feel safe” (KII 5, parent of ASD
mimic our emotions, so we should try staying happy and child).

Regy MM, et al. Building Bridges: Resilience and Autism. Func Disabil J. 2024; 7:E310.1. 7
 2024, Volume 7

“While communication is a larger picture, basic com- of their age. However, with continuous training and rein-
prehension, and intent to communicate is rather a bigger forcement, we can make this achievable as well.
concern here. So, we try all methods, be it prompting,
picture cues, whatever it maybe, if it is reflecting well on Each case of ASD varies in presentation and adaptation
the child, we encourage the parents to follow the same time; therefore, it is best to have a regular follow up if a
at home. Because if tomorrow he/ she must go to school routine institutional therapy is not possible.
even, they must be able to at least attempt to understand
and participate in the activities” (KII 4, speech/language Discussion
pathologist).
Raising a child with ASD can get overwhelming be-
ASD children take time to communicate, as they have yond a point for the caretakers, parents and families and
difficulty in comprehension. There are also high func- often, the birth of a child with ASD may alter the fam-
tioning cases of the ASD spectrum who speak but may ily dynamics due to challenging interactions between
sound monotonous or robotic. Either way, the fluency the child and parents requiring sheer effort leading to
and pattern of speech is prioritized for training for basic the emotional burden which may further lead to vari-
social skills development and facilitation of his/her ac- ous forms of outcomes in terms of mental health issues,
tivities of daily living. frustration, guilt, exhaustion and compromised effort sus-
tain [5].
While training at the therapy centres, some therapists
even help them get familiar with sound producing ob- In a recent study done by Raju et al. (2023), the quality
jects as assisted devices, for example- whistle hanging of life was compared between parents of typically normal
on their id cards, anklets, etc. children and parents of children with ASD; although par-
ents from different psycho-social backgrounds showed
“Another common sequel of having such children is different outcomes, few contributing factors towards a
that, if there is another sibling (who is a normal child), better quality of life included general health status, social
chances are there to neglect this child as the parents are relationships and immediate environmental domains [5].
more worried about the special child. In such cases, the In our study, the factors which helped in better resilience
neglected other sibling either harms the affected child or were observed to be higher socio-economic class, higher
they become a little emotionally detached and try to be- levels of education and employment status. Although in
come independent sooner”(KII 3, clinical psychologist). general our outcome showed a 50-50 divide between
those parents with low resilience and those with high
The environmental balance is a vital concern for fami- resilience, on further analysis we were able to see what
lies dealing with special children. It takes time for the factors significantly contributed towards the outcome
families themselves to accept and adapt to their living status of resilience, respectively.
changes after the birth and growing of a child with ASD,
thereby orienting the immediate surrounding and people In a previously done study by Amr et al in 2012, the
to the same will take more time eventually. results showed that the mothers who were homemakers
detected their child to have ASD sooner than the work-
“During one of my workshops with parents of children ing mothers, but the same study also justifies the pattern
having developmental delays, I had a particular session of raising children could be the reason in this case as
where each of them had to mention one difficulty or ob- different countries have different norms of child care [6].
stacle they are hurdling with on a constant basis (with In our study, majority of the respondents were females
respect to their child). Each time a participating parent (90%) and thereby, we were able to get only one perspec-
gave a response, I found all the other parents nodding tive of child care and reasons associated with the same.
their heads and agreeing to that. Which means, all of In our qualitative follow up, we did address these gaps,
them have encountered each of those obstacles at some where some parents reported that being a home-maker
point of time” (KII 3, clinical psychologist). helped them spend more time with their child, thereby
detecting signs earlier; however, those parents who were
Activities of daily living, such as, brushing/bathing/toi- working did report they always had either a grand-parent
let training, etc. are small events that take time to get ac- or spouse taking turns to watch over the child while one
customed to when it comes to such children. They may of them were away for work, hence trying to make sure
take longer time to adapt as compared to normal children there were no gaps in their care towards the young child.
All these could be reasons why the recent trends of ASD

8 Regy MM, et al. Building Bridges: Resilience and Autism. Func Disabil J. 2024; 7:E310.1.
 2024, Volume 7

early diagnosis are much higher than the previous times. Another study done by Sun et al. (2014) investigated
Parents are more aware and there are better resources to the various parental concerns and risk of ASD. In this
refer these days than initially; thus, giving more prepara- study, parents with higher social class seemed to express
tory time for the parents and families to accept and nor- more concerns than those from lower social classes and
malize their situations bringing about better chances of higher the degree of parental concern over their child in
coping and resilience. terms of emotions, concentration, or other behavioral is-
sues, the more likely was the child to have ASD indepen-
In another interesting study by Thomas et al. (2012), dently of potential confounders. The study also justified
the association between socio-economic status and Au- their findings as them being the closest care-givers of
tism were observed, where the prevalence of ASD was their child, parents do have more opportunities to recog-
found to be higher among the higher income groups as nize abnormalities in their children [10].
compared to the lower income groups [7]; this could be
due to higher access to facility-based diagnosis among In another existing study done by Lord et al. (2018),
the higher income areas which could be the reason for ASD was referred to as a term used to describe a constel-
more reporting of cases. In our study, we found the par- lation of early-appearing signs such as social commu-
ents from higher socio-economic status to have higher nication deficits and repetitive sensory–motor behaviors
resilience as compared to those from lower socio-eco- associated with varied etiological causes for the same. It
nomic status. This could be because of their access to also suggested that all families, caregivers and person-
better facility, help measures or opportunities for higher nels associated with individuals living with ASD, would
centre rehabilitation and care. be rather prepared with information regarding the cur-
rent functioning of the person with ASD, which thereby
In a population-based case-control study done by helps them to anticipate transitions, or navigate referrals
Dickerson et al. (2014), the role of parental occupation to service providers and specialists as and when required.
in ASD was assessed and their results suggested that the Thereby, ASD weighs as a substantial economic burden,
usual occupation of mothers (prior to diagnosis of their mainly owing to the environmental contribution, which
child) and occupational history of both parents, as well results in higher needs and lower gaps in receiving due
as field of educational study, may be important to con- care [11]. In our study also, we observed that parents
sider with regards to the child’s diagnosis and develop- from lower socio-economic classes had more concerns,
mental progress [8]. Requiring ”systemizing skills” and more history of stress and lower resilience as compared
suggesting a distinct phenotype, but alternatively this to those parents from higher socio-economic classes.
may have been related to selection biases [8]. In a study, This could be due to their environmental and personal
researchers conducted a population-based study to ex- limitations that are hindering them from higher access to
plore whether fathers, or mothers, of children with ASD support and rehabilitative measures, thereby increasing
are over-represented in fields requiring highly technical their anticipation and worries concerning their child and
skills. Subjects included 284 children with ASD and compromising on their resilience.
659 gender-matched controls, born in 1994 in the San
Francisco Bay Area [9]. Parental occupation and indus- As the trend of research material goes, limited re-
try were abstracted verbatim from birth certificates. sources (man and material) serve as a major contributor
Engineering, computer programming, and science were to delayed diagnosis and likely delayed intervention in
examined as highly technical occupations. To limit bias case of neuro-developmental conditions, such as ASD;
by parental socio-economic status, we selected a referent thereby to improve the outcome in such cases, greater at-
group of occupations that seemed professionally similar tention needs to be channelled towards research, capac-
but of a less technical nature. Odds ratios (ORs in our ity building, and culturally relevant and cost- effective
study, we did not retrospectively evaluate the details of interventions [12].
parental occupation and ASD, however in relation to re-
silience, we found that the parents who were gainfully Conclusion
employed were found to have more resilience than those
who were homemakers; which could be justified as hav- Parents from lower socio-economic backgrounds had
ing another field of interest or effort to be engaged with, lower resilience as compared to those from higher socio-
rather than spend one’s entire time with the child feeling economic classes. Also, parents who had higher educa-
dependent and narrow in options [9]. tion and who were gainfully employed had showed a
higher resilience as an outcome.

Regy MM, et al. Building Bridges: Resilience and Autism. Func Disabil J. 2024; 7:E310.1. 9
 2024, Volume 7

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extended support throughout the study period.

10 Regy MM, et al. Building Bridges: Resilience and Autism. Func Disabil J. 2024; 7:E310.1.