Original Article

Parenting Challenges and Reasons for Not

Availing Rehabilitation Services Among
Families of Adolescents with Autism
Spectrum Disorder: A Qualitative Study
Fathima Noori1, Shivani Tiwari1 , Sebastian Padickaparambil2 and Dan Isaac Pothiyil2

ABSTRACT the rehabilitation services and parental discontinuation of rehabilitation services

Background: Autism spectrum disorder (ASD)
is a lifelong condition requiring continued
rehabilitation services. However, children
with ASD who seek rehabilitation services
tend to drop out once they enter puberty,
challenges among primary caregivers
of adolescents with ASD, and their
corresponding subthemes. The reasons for
discontinuation of rehabilitation included
financial difficulties, difficulties in handling
the child, and a lack of improvement in the
as well as various parenting challenges
among primary caregivers of adolescents
with ASD relevant to the Indian context.
These findings have implications for
mental health care professionals and
policymakers.

because of varying reasons, some of which
are unknown. This study intended to explore
the reasons for not availing of rehabilitation
services in families of adolescents with ASD
and the parental challenges in taking care of
adolescents with ASD.
Method: The study followed a descriptive
qualitative research design by conducting
in-depth interviews with 12 primary
caregivers of adolescents with ASD (10 to
19 years; mean age 16.3 years) who were
not availing of any direct rehabilitation
services. All interviews were conducted
by telephone, and data obtained were
subjected to thematic analysis.
Results: The results showed two major
themes, viz. reasons for discontinuing
child. A few of the parental challenges were
disruptive behaviors and associated medical
conditions of the child and difficulty in
managing changes during adolescence.
Conclusion: The study revealed several
reasons as well as potential barriers to
avail rehabilitation services in Indian
families of adolescents with ASD. The data
further unveil related parenting challenges
specific to the Indian context. Further,
implications for service providers and
policymakers are discussed.
Keywords: Adolescents, autism spectrum
disorder, rehabilitation, parental challenges
Key Messages: Findings from the
study reveal salient reasons for the
A
utism spectrum disorder (ASD) is
a neurodevelopmental disorder
characterized by impairments in
verbal and nonverbal communication,
social interactions, as well as restrictive
or repetitive behaviors that persist well
into adulthood.1 Early rehabilitation ser-
vices are always preferred for children
with ASD; yet, the need for ongoing reha-
bilitation services planned explicitly for
adolescents with ASD cannot be under-
estimated. Given the range of difficulties
and issues that change over time, there
is a need to provide continuous rehabil-
itation services to make adolescents with

1
Dept. of Speech and Hearing, Manipal College of Health Professions, Manipal Academy of Higher Education, Manipal, Karnataka, India. 2Dept. of Clinical
Psychology, Manipal College of Health Professions, Manipal Academy of Higher Education, Manipal, Karnataka, India.

HOW TO CITE THIS ARTICLE: Noori F, Tiwari S, Padickaparambil S and Pothiyil DI. Parenting Challenges and Reasons for Not Availing
Rehabilitation Services Among Families of Adolescents with Autism Spectrum Disorder: A Qualitative Study. Indian J Psychol Med.
2023;45(3):263–270.
Address for correspondence: Shivani Tiwari, Dept. Speech and Hearing, Manipal
Submitted: 30 Jul. 2021
College of Health Professions, Manipal Academy of Higher Education, Manipal,
Accepted: 09 Apr. 2022
Karnataka 576104, India.
Published Online: 23 Jun. 2022
E-mail: tiwarishivani.2009@gmail.com

Copyright © The Author(s) 2022

Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative ACCESS THIS ARTICLE ONLINE
Commons Attribution- NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/)
Website: journals.sagepub.com/home/szj
which permits non-Commercial use, reproduction and distribution of the work without further permission
provided the original work is attributed as specified on the Sage and Open Access pages (https:// DOI: 10.1177/02537176221096769
us.sagepub.com/en-us/nam/open-access-at-sage).

Indian Journal of Psychological Medicine | Volume 45 | Issue 3 | May 2023 263

 Noori et al.
ASD lead independent or semi-indepen-
dent lives in adulthood.2 While several
children with ASD seek rehabilitation
services, many tend to drop out once
they enter puberty3 because of varying
reasons that often remain unknown. It is
assumed that availing of long-term sup-
port services for adolescents with ASD
may be compromised because of parent-
or client-related issues.4
Families of adolescents with ASD
experience significant difficulties in tran-
sitioning to adult medical care. A few
barriers to accessing health or rehabili-
tation services are financial hardships to
cover services for their children, difficulty
in getting insurance reimbursement for
needed services,5 and unavailability of
services.6 Other barriers faced by families
include lack of information on the tran-
sition process, difficulty finding a service
provider with sufficient ASD knowledge,
lack of coordination and communication
between service providers,7 and difficulty
in receiving transition plan for adoles-
cents with ASD.5
Primary caregivers of children with
ASD play a key role in facilitating con-
tinued access to various rehabilitation
services to facilitate overall develop-
ment. Providing intensive and adequate
care to an adolescent with ASD is always
an enduring task for the parents or care-
givers. Many parents reported a negative
impact on their recreational activities,
finances, physical and mental health,
marital relationships, and personal
development.8 Furthermore, parental
misconceptions and guilt,9,10 behavioral
problems, and social and emotional dif-
ficulties11 in adolescents with ASD could
lead to unfavorable effects on the mental
and physical health and quality of life of
the parents, especially the mother.12
There is a lack of information regard-
ing access barriers to rehabilitation
services in parents of adolescents with
ASD not receiving rehabilitation ser-
vices. The above-presented literature
is largely from the families who either
never availed of or were availing of reha-
bilitation services for adolescents with
ASD. To the best of our knowledge, none
of the studies have particularly inves-
tigated the reasons for discontinuing
rehabilitation services in this popula-
tion. This particular gap in knowledge is
more crucial in a developing nation with
limited resources and health insurance
264 Indian Journal of Psychological Medicine | Volume 45 | Issue 3 | May 2023
facilities. This brings us to the research
question, “What are the reasons for
nonavailing of rehabilitation services in
families of adolescents with ASD?” Given
this need, this study aimed to explore the
reasons for not availing of rehabilitation
services and parental challenges and
issues in families of adolescents with
ASD within the cultural context of India.
Method
This study employed a qualitative design
where data was collected using in-depth
interviews and was subjected to the-
matic analysis.13
Participants
Participants were recruited from an ASD
(parent) support group and a special
school (previous records of children with
ASD who discontinued schooling) in the
South-Indian state of Kerala. A purposive
sampling procedure was used to recruit
the participants. Participants for the
study were the parents or the primary
caregivers (who took care of and spent
most time of the day with the patient)
of adolescents (age range 10 to 19 years,
as per the WHO14) with ASD who had
received the diagnosis of ASD from a
psychiatrist and/or clinical psychologist,
who were not availing of any direct reha-
bilitation services (i.e., speech therapy,
occupational therapy, special education
services at school, behavioral therapy,
and vocational training) for a minimum
period of two years. The details on
autism severity in adolescents with ASD
were obtained from the medical records.
Families having adolescents with ASD
having severe degenerative conditions
(e.g., Rett’s disorder, childhood disinte-
grative disorder, or Fragile X-syndrome)
and/or with vision or hearing impair-
ment(s) were excluded. The interview
was carried out in the local language,
Malayalam, by the first author, a native
speaker of the language.
Procedure
The study protocol was approved by the
Institutional Research and the Insti-
tutional Ethics Committee (589-2020)
and registered under the Clinical Trials
Registry-India (CTRI/2021/01/030172).
A semi-structured interview guide
eliciting reasons for not availing of reha-
bilitation services and parental challenges
experienced by primary caregivers
was prepared based on the literature
search and expert opinion (Appendix A,
online-only supplementary material).
Permissions were obtained from the
respective centers for collecting data. All
primary caregivers were screened as
per the study criteria. After obtaining
consent, the first author carried out one-
to-one in-depth telephonic interviews at a
time provided by individual participants
as per their convenience. The interview
started by explaining the purpose of the
study, guaranteeing confidentiality, and
seeking demographic details. As the ques-
tioning strategy was responsive to each
participant, the interviewer used probes
to clarify comments and elicit in-depth
explanations. An android application,
Cube ACR, was used to record the consent
and the complete telephonic interviews.
The data were collected from January to
March 2021.
Coding and Analysis
All obtained samples were played back
and transliterated offline to ensure the
accuracy of information. All transcripts
were further read and verified against
the audio recordings by an external
reviewer and native speaker of the lan-
guage of the interview. Saturation of
data was observed after the ninth par-
ticipant. However, data were collected
for additional three participants to ascer-
tain the same. The verified transcripts
were read systematically and analyzed
using a six-phase thematic analysis.15
These steps involved familiarizing with
the data (transcripts), followed by the
generation of names/initial codes that
addressed respective research questions.
Statements that illustrated the essence of
each code were highlighted and assigned
numbers to locate the codes within the
transcripts. Subsequently, these initial
codes were reviewed by the second
author in order to retain the diversity of
the initial codes. Finally, the codes were
checked and discussed by all the authors.
Verification of data integrity was done
with the involvement of an external
reviewer. The codes from the external
reviewer were compared, and discrepan-
cies were discussed within the research
team. A code list was generated after
coding the entire data. For the purpose
of analysis and presentation of the

result, all participants were anonymized,
and excerpts were identified by the nota-
tion of mother (M) and father (F) with
an accompanying participant number
(Appendix B, online-only supplementary
material).
Results
A total of 12 primary caregivers (11
mothers and one father) of adolescents
with ASD (mean age = 16.3 years; SD =
2.74 years) participated in the interview.
As reported by them, the commonly
availed rehabilitation services (before
discontinuation) included school-based
special education, speech and language
therapy, occupational therapy, and phys-
iotherapy. The average duration for each
interview was approximately 45 min.
Table 1 presents the demographic details
of caregivers and adolescents with ASD.
The results revealed two main themes,
i.e., major reasons or barriers for not
availing the rehabilitation services and
challenges faced by parents in taking
care of adolescents with ASD, and cor-
responding subthemes, as provided in
Table 2.
Reasons for Discontinuing
Rehabilitation Services
Caregivers described a range of reasons
for the discontinuation of the rehabili-
tation services, which are discussed in
forthcoming sections.
Logistic Difficulties
Caregivers stated logistic reasons like
distant rehabilitation center, difficulty
in dropping and bringing the child back
home, difficulty staying at a distant place
(from home) to avail rehabilitation ser-
vices, and long wait time, e.g., one of the
parents had to wait for six months before
starting the therapy, though they were
interested in continuing the rehabilita-
tion services.
“Because of travelling issue, I couldn’t
take him to special school afterward.
Original Article
Reaching there and getting back on time
was all difficult for me …” (M11)
Need for the Parent to
Accompany the Child
Accompanying the child to the rehabil-
itation center was difficult for working
parents and mothers with household
responsibilities, who also had to attend
to the needs of younger siblings or old
parents. As in the case of participant M6,
the child could not be sent to school unac-
companied because of repeated seizures,
which the mother believed would be
troublesome for the teachers to handle.
The parents, too, could not accompany
the child to the special school; hence, they
stopped the services. Parents had to spare
time in the midst of their busy sched-
ules, as rehabilitation centers and special
schools demanded the parents be with the
child all the time, which was not feasible.
“To whichever school we took him,
whenever we asked, they informed that

TABLE 1.

Details of Primary Caregivers and Adolescents with ASD.

Primary Caregiver Adolescent with ASD
Associated health
Relation to Educational Place of Family Age Age at Autism conditions/
S. No. the child Age (years) qualification living type Sex (years) diagnosis severity comorbidity
M1 Mother 36 Graduate Urban Nuclear Male 19 3 years Moderate Irritable bowel
9 months syndrome
M2 Mother 39 Graduate Urban Nuclear Male 14 4 years Mild –
F3 Father 43 10th standard Rural Joint Female 19 9 years Severe Epilepsy, cerebral
palsy
M4 Mother 40 Fifth stan- Rural Joint Male 19 3 years Severe Epilepsy, intellectual
dard disability
M5 Mother 38 Eighth stan- Rural Joint Female 18 3 years Severe Difficulty to walk,
dard epilepsy
M6 Mother 45 Graduate Rural Joint Male 12 2 years Moderate Epilepsy
5 months
M7 Mother 42 Graduate Urban Joint Male 15 1 year Moderate –
6 months
M8 Mother 38 Graduate Urban Joint Male 13 5 years Severe Epilepsy, intellectual
disability
M9 Mother 39 Graduate Urban Nuclear Male 13 3 years Mild –
M10 Mother 37 10th standard Rural Joint Female 18 8 years Severe Intellectual dis-
ability
M11 Mother 49 Graduate Rural Nuclear Female 17 3 years Moderate Epilepsy

M12 Mother 51 Eighth stan- Rural Nuclear Male 19 4 years Moderate –

dard
ASD, Autism Spectrum Disorders.

Indian Journal of Psychological Medicine | Volume 45 | Issue 3 | May 2023 265

 Noori et al.
TABLE 2.
Overview of Themes and Subthemes Identified.
Themes Subthemes
Reasons for discontinuing Logistic difficulties
rehabilitation services Need for the parent to accompany the child
Difficulty in handling the child
Financial difficulties
Family commitments
Lack of satisfaction with the existing treatment
Lack of improvement
Adverse effects of medication
Parental challenges in taking care Difficulty in managing the changes during adolescence
of the child Disruptive behaviors of the child
Difficulty to manage the child outdoors
Associated medical conditions of the child
Worries about the cognitive abilities of the child
Feeling embarrassed at societal responses
Comparison with other children causes emotional turmoil
Being apprehensive about the child’s uncertain future
Insecurity regarding the safety of the child
Absence of guidance by service providers
Loss of confidence
“With father’s low-income work, it is
difficult for us to meet daily therapy
charges, and expenses are unaffordable
for us…” (M6)
Family Commitments
Caregivers expressed their involvement
with household commitments resulting
in an inability to spare time for attend-
ing rehabilitation services. One of the
mothers reported that she had to discon-
tinue the child’s therapy after delivering
the second child. Another mother stated
that it was difficult for her to take her
child to a special school as she had to care
for her sick mother-in-law at home.
“I was the only one there to take care
of his sick and bedridden mother...
So I couldn’t manage to take him for
therapy…” (M6)

Lack of Satisfaction with

the child cannot attend the therapy or
the school without parent…told me
to be with him throughout the school
time…” (M8)
Difficulty for Parents
and Service Providers
in Handling the Child in
Rehabilitation Centre
Many parents expressed difficulty han-
dling a child with ASD as a major reason
for discontinuing the rehabilitation
services. Behavioral issues, toileting
issues, health issues like irritable bowel
syndrome, sleep disorder, and frequent
seizures were some of the major chal-
lenges faced by the parents, making
it difficult for the parents and service
providers to manage the child, which
ultimately led to the discontinuation of
rehabilitation services.  Communication (AAC) programs, which
“His condition is such that he cannot
be left in the school alone because he
falls down following seizure… That
being the case, it might be difficult for
the teachers to handle him in such situ-
ations…” (M6)
A mother explained an incident when her
child with ASD became unmanageably
violent on the way to the special school,
after which the child was not sent to the
rehabilitation center. Another parent
stated that because of the sleep disorder
experienced by the child, it was difficult
266 Indian Journal of Psychological Medicine | Volume 45 | Issue 3 | May 2023
for the mother to take him for therapy
on time, which often resulted in the can-
cellation of the sessions and eventually
led to the discontinuation of therapy.
A few parents (M4 and M8) reported
that the toileting and behavioral issues
were unmanageable such that the child
could not be sent to school or anywhere
outside. A mother recollected an incident
when special educators in her son’s class
resigned from their job because of the
child’s behavioral and toileting issues.
Another parent eventually had to dis-
continue rehabilitation as the child’s
behavior deteriorated remarkably fol-
lowing the relapse of epilepsy. One of
the mothers was interested in restarting
intervention, yet worried if the new ther-
apist would be able to handle the child
like the previous therapist.
Financial Difficulties
Financial problem was yet another
reason for discontinuing the rehabilita-
tion therapy or not enrolling children
with ASD in any centers because charges
for speech therapy and occupational
therapy were fairly high and unafford-
able for many parents (M4 and M6). It
was an enormous expense for the family
to meet the cost of the individual therapy
session(s) with the father’s low income.
Some parents expressed financial con-
straints to meet travel expenses and
accommodation costs, in order to avail of
therapy at distant places, in addition to
the therapy charges.
the Existing Treatment
Parents narrated varied experiences and
levels of satisfaction with the treatment
and rehabilitation team. Many parents
(M1, M4, and M7) were not satisfied with
the services the child received at the reha-
bilitation center and reported enrolling
their child in the rehabilitation center as
a bad decision. Parents expressed concern
about the child not getting enough atten-
tion from the service providers. Another
mother (M1) stated that contrary to her
expectation (of the child getting indi-
vidual attention), the special educator
was available only once a week. One
parent expressed her discontent over the
treatment while expecting to have a reha-
bilitation professional who would be able
to handle the child properly. She also had
expectations of learning more about a
few of the Alternative and Augmentative
were not met.
“I thought he would get more attention
at special school than normal school,
and special educators would be more
understanding and skilled to handle
such children with special needs.
With all these thoughts, I put him in
a special school. What to say…Most
of the time, he was left unattended at
special school…special educators and
administrators will be engaged in their
work...not every child was getting indi-
vidual attention. Further, there was no
training provided…I used to even get

phone calls from the school, complain-
ing that he hurts other children at the
special school...” (M1)
Lack of Improvement
Nearly all participants echoed the lack
of improvement in the child’s condi-
tion as another concern. Many of the
parents (F3, M4, M8, and M11) decided
not to take the child to the rehabilitation
center as they found no improvement
in the child’s life skills. A caregiver (M1)
concluded that enrolling the child in a
special school was of no help to the child,
as there was no reduction in the child’s
tantrums after he was enrolled in the
special school and, therefore, discontin-
ued. Another mother (M7) felt that all
therapy efforts tried for the child were in
vain (after the child showed regression),
so she had no desire to continue therapy
for the child. Another parent (M8) felt
sad as no improvements were seen for
her child while treatment was beneficial
for other children with ASD.
“It was so sad that there were only neg-
ative results from all the treatments.”
(M8)
Adverse Effects of
Medication
Many parents reported adverse effects
of medications, including sleepless-
ness, drowsiness, aggravation of acidity
issues, weight gain, and irritability,
which made some parents discontinue
the medications. A parent (M2) reported
that instead of improving the hyperac-
tivity in her child, the medication caused
drowsiness and hindered the child’s par-
ticipation at the rehabilitation center.
Another parent (M11) stopped taking her
child to the special school as he was not
being engaged in any activities at school
because of drowsiness as a result of the
medication.
“There was no benefit out of med-
icines... while given tablets and
medicines, she used to get tired, and
most of the time she sleeps in special
school...” (M11)
Parenting Challenges in
Taking Care of the Child
This theme is about the experienced
parental challenges and the need to
constantly look after adolescents with
ASD. The following sub-themes emerged
in relation to this theme.
Difficulty in Managing
the Changes During
Adolescence
Parents felt anxious as the child reached
adolescence, and it was difficult for the
parents and children to cope with the
physical and mental changes that occur
during adolescence. Parents of female
adolescents with ASD (F3, M5, M10,
and M11), in particular, stated that their
children are not capable of maintaining
personal hygiene themselves during
the time of menstruation. A mother
(M5) mentioned that her child would
not cooperate with her in maintaining
personal hygiene, and she often had to
change the child’s dress several times
while she showed aggressive behaviors,
temper tantrums, and sensory issues.
Few of the parents (M1 and M8) stated
that their adolescents with ASD would
engage in sexual behaviors, like mas-
turbating, in inappropriate situations,
which was very embarrassing for the
parents.
“She tears apart the sanitary pad into
pieces and throws it somewhere…she
knows nothing about it…she smears
it over her face and puts in her mouth
…” (M5)
Parents reported varied experiences in
making their children understand the
bodily changes of adolescence. A few
parents tried to make the adolescent
aware of bodily changes following sec-
ondary sexual development and the need
to keep personal hygiene. Two of the
parents (M2 and M12) reported that their
children showed curiosity related to the
bodily changes (like hair growth on the
face and legs) while they explained it to
the children.
Disruptive Behavior of the
Child
Most of the parents expressed their
concerns when adolescents with ASD
showed disruptive behaviors like aggres-
siveness, temper tantrums, crying for no
apparent reason, inappropriate laughter,
noncooperativeness, self-injurious behav-
iors, and hurting others. Some of the
Indian Journal of Psychological Medicine | Volume 45 | Issue 3 | May 2023
Original Article
parents (M1, M5, M7, and M8) reported
that the child’s behavioral issues wors-
ened when they reached adolescence.
Another parent (M9) rather observed
positive changes in the child’s behav-
ior during adolescence, such as reduced
temper tantrums and hurting others,
being considerate toward the younger
sibling, and even starting to control his
anger and aggressiveness (M1).
“He makes the other kids at the school
cry by pushing them away, hitting
their head against the wall or floor,
and pinching them …and he starts
laughing at them when the kids cry
…” (M8)
According to the parents, toileting
issues were quite difficult to manage
and, at times, embarrassing. The
adolescents were reluctant and nonco-
operative to clean themselves because
of sensory issues, which was a matter of
worry for many parents.
Some parents (M4, M8, and M10) con-
veyed their anxiety over behaviors such
as getting undressed in inappropriate
situations and hurting others. A parent
(M4) expressed her anxiety regarding
planning for the next child, as her ado-
lescent with ASD hurts other children.
Two parents (M1 and M8) reported
issues such as anger; increased tan-
trums; behaviors like jumping around,
running around, screaming, and clap-
ping hands, and showing aggression
when the child feels discomfort because
of acidity issues or indigestion. Another
parent (M4) expressed her distress over
the child’s noncooperation with groom-
ing, such that even barbers refused to
cut the child’s hair and the mother had
to groom him.
When discussing aggressive and
disruptive behaviors, a parent (M8)
informed that the child is so violent
that two or three people are required to
control him and bring him to the room;
else, everything within his reach would
be destroyed, and the child rolls on the
ground if left outside. Many parents (F3,
M4, M5, M8, M10, and M12) reported
that adolescents with ASD showed
self-injurious behaviors like head
banging, self-biting, and putting their
head in between doors when frustrated
and emotionally overwhelmed. Some
parents (M4 and M8) reported confin-
ing adolescents with ASD in a room to
control them.
267
 Noori et al.
Difficulty to Manage the
Child Outdoors
Caregivers expressed differences in
opinion in terms of handling adoles-
cents with ASD outdoors. While most
parents (M4, M6, M8, and M10) hesitated
to take their children out for social gath-
erings, some (F3, M5, M7, M11, and M12)
believed in taking adolescents with ASD
as other children, in spite of the difficulty
in handling. Many parents (M4, M6, M8,
and M10) reported that they stopped
attending family functions because of
embarrassment caused by disturbance
to others or difficulty in handling them.
One of the parents (M1) stated that
she could not take her child with ASD
outside after her second child was born,
and if at all she took the children out, she
had to take only one at a time.
“I can’t take him to any marriage
functions, as he won’t sit still. He eats
others’ food… It is so embarrassing for
us.” (M4)
Associated Medical
Condition of the Child
Most adolescents with ASD presented
with comorbid medical conditions
(like constipation, irritable bowel syn-
drome, gastroesophageal reflux disease,
indigestion and acidity issues, urinary
incontinence, and seizures) that needed
attention from parents. Repeated sei-
zures were one of the major causes of
concern for parents. One parent (M8)
reported that her child often develops
diarrhea followed by seizure attacks.
Comorbid psychopathologies like hyper-
activity, anxiety, mood disorders, and
even sleep disorders were seen. Often,
the parents had to stay awake at night,
felt tired the whole day, and felt helpless
as it affected the sleep of others at home.
“Sometimes he won’t sleep at night. He
won’t let me sleep; he walks all around
and pulls all others out of bed…” (M4)
Worries About the
Cognitive Abilities of the
Child
Many parents informed that adoles-
cents with ASD remained poor in their
268 Indian Journal of Psychological Medicine | Volume 45 | Issue 3 | May 2023
cognitive abilities like executive
functions, theory of mind, logic and rea-
soning skills, and comprehension. A few
parents (F3 and M8) felt that, although
their child appeared to understand a few
things, was ignorant at times. A parent
(M9) felt anxious that her child could not
understand what was right and wrong.
Another mother worried that she could
not identify any skills her child was good
at.
“Sometimes, she answers our ques-
tions in 4-5 words utterance. After that,
she starts speaking something else.
Sometimes I feel that she has no diffi-
culty understanding, but at some other
times ... she can’t understand....” (F3)
Parent Feels Embarrassed
at Societal Responses
The parents believed that many people
around were less understanding, showed
unwarranted sympathy, and stared at
their children. A parent (M4) reported that
she was hesitant to take her child even to
a relative’s house, as she felt embarrassed
about the response from relatives toward
the child’s behavioral issues. Furthermore,
questions from others who are unaware of
ASD were distressing for the parents (M1
and M11). Some people even believed that
children with ASD are incapable of doing
anything of their own. A mother (M10)
recollected an incident where she felt
miserable that her own family members
accused her of being careless and unre-
sponsive to her child’s injurious behaviors
toward other children.
“I take my child only to my relatives’
house. No one seems pleased. Every-
one used to stare at children like this
and show sympathy. Not every parent
might feel good at others’ sympathy…”
(M8)
Comparison with Other
Children Causes Emotional
Turmoil
A parent (M9) expressed her sadness
when she saw other children of her
child’s age having fun and wished her
child to be like them. A few parents (M4,
M6, and M8) stated that they felt bad
that, while most of the children with
ASD at special school were able to do
toileting with minimal support, their
child could not. Another parent (M9)
stated that she felt upset when other
children did not involve her child with
ASD while playing.
“Other children say… go away from
here…you don’t have to come with us
to play…I feel sad that if my child had
been like them, he could have played
with them…” (M9)
Parent Apprehensive About
Child’s Uncertain Future
Parents reported that they were worried
about the future of their child. Parents
were anxious about what would happen
to their children in their absence and how
long they would remain healthy enough
to look after their children with ASD.
Some parents worried about the safety
issues as the children with ASD grew as
adolescents. One of the mothers (M2)
pointed out that she felt anxious when
she thought about her child’s future,
marriage, employment, and indepen-
dent life. Another parent (M1) said that
she became more apprehensive about
her child’s future when she understood
more about autism.
“After a period of time…gradually I
could understand that this is such a
condition due to which most probably
his future would be lost …”
Insecurity Regarding the
Safety of the Child
Many parents feared about the child’s
security in public and hence would
not leave their child alone. A few of the
parents (M4, M7, M8, M9, and M10)
mentioned that they never left their
child with ASD with anyone and used
to accompany the child always, as they
worried about the child’s safety. Two of
the parents (M4 and M7) shared their
fear about the child’s obsessiveness with
vehicles and that the child would run
toward the road whenever he heard the
sound of any vehicle, with little regard
for safety.
“He likes to travel in vehicles. He
sits in an autorickshaw although it
is someone else’s. He will go with
anyone…that’s what I’m afraid of…”
(M4)

Absence of Guidance by
Service Providers
Nearly all parents in the study reported
not having received any guidance from the
rehabilitation centers regarding strategies
to cope with the physical and psychologi-
cal changes in adolescents with ASD. A few
parents (M4 and M11) had not received any
sort of guidance from service providers
regarding the diagnosis of autism in their
child. Other parents (M1 and M10) came to
know about the diagnosis of ASD very late
because of the delay in receiving a referral
from the consulting medical doctor. In the
case of another parent (M8), although the
doctor had diagnosed the child at the age
of three years, neither of the parents was
informed.
Two parents (M11 and M12) got to know
about the availability of rehabilitation for
children with ASD very late. A few others
(M1 and M4) had no clue as to what could
be done to improve the child’s commu-
nication skills, as they were misguided
by the consulting doctor that there was
no treatment to improve the child’s con-
dition. Another parent (M4) expressed
her surprise when she got to know about
speech and language therapy during the
study and the difference it can cause in a
child’s communication skills.
“Although regular consultation by the
doctor was done from 2-3 years of age,
it was only at the age of eight years that
the doctor told that the child requires
training…” (M10)
Parent Losing Confidence
A few parents (M1 and M8) reported feeling
apprehensive because of the increase in
the child’s aggressive behavior as the
child reached adolescence. A parent (M4)
indicated that she felt hopeless as the ado-
lescent with ASD could not carry out basic
life skills like dressing on his own. One of
the parents (M6) expressed her helpless-
ness regarding the lack of improvement
in the child’s condition. Another parent
(M10) stated that, unlike earlier, her con-
fidence in dressing and taking the child
out has come down because of the child’s
physical appearance.
“Isn’t the disorder of autism a special
disease which is very difficult to
handle?” (M6)
Discussion
This study provided a descriptive
account of primary parental perspectives
on reasons for not availing of rehabilita-
tion services for adolescents with ASD
and potential access barriers to rehabili-
tation services. The results also revealed
several challenges in the parenting of
adolescents with ASD.
Results on reasons for discontinuing
rehabilitation services provided a broader
understanding of various reasons why
families of adolescents with ASD failed
to continue rehabilitation services. The
financial difficulties as one reason to dis-
continue rehabilitation services showed
convergence with the literature on finan-
cial constraints as an access barrier to
avail rehabilitation services.2,6 Specific
financial difficulties faced by the parents
in this study included difficulty to meet
the daily therapy charges, travel/accom-
modation expenses as they are forced to
hire a private vehicle owing to the child’s
behavioral issues, the cost to avail reha-
bilitation at distant places, and being
unable to go for work in order to look
after the child. The financial difficulties
reported in the literature, however, were
difficulty in getting insurance reim-
bursement, absence of a transition plan
for adolescents with ASD,5 and inability
to afford the payments for services and
debts.5 The difference in the nature of
financial difficulties could be attributed
to the lack of insurance schemes covering
rehabilitation services for children with
ASD in India. The government schemes
on monthly financial assistance, aids,
and devices are not sufficient enough to
cover the regular expenses of the rehabil-
itation services. Further, there are only a
few government-run schools for children
with special needs to avail of free services.
Other barriers to avail of medical and
rehabilitation services for adolescents
with ASD, as documented in the litera-
ture, are remaining on a waiting list for a
long time and unavailability of services.6
This was also the case for one of the par-
ticipants in our study, where the parents
were asked to wait and start therapy after
six months. This particular factor reflects
the lack of available rehabilitation ser-
vices and personnel for children with
special needs. Unawareness about the
condition of ASD and its rehabilitation,
Indian Journal of Psychological Medicine | Volume 45 | Issue 3 | May 2023
Original Article
along with lack of guidance (as apparent
from the responses of a few caregivers),
was another reason for not availing of
rehabilitation services among families of
adolescents with ASD.16 Evidence-based
intervention models17,18 exist for children
and families of ASD in the Indian context,
yet there is a gap between research and
practice.
Other reasons that emerged from this
study included logistic difficulties, dif-
ficulty in handling the child, the need
for the parent to accompany the child,
and family commitments. These issues
restricted the caregivers from attending
rehabilitation services for their children
even though they wished to. Dissatisfac-
tion with the existing treatment, lack of
improvement, and adverse effects of med-
ications were other factors reported by
some of the parents as reasons to discon-
tinue rehabilitation. While these findings
reflect the quality of services provided to
adolescents with ASD, it also reveals insuf-
ficient knowledge in caregivers, thereby
leading to unrealistic expectations.
Findings on the parenting challenges
theme indicated difficulty in manag-
ing the changes during adolescence
along with disruptive behaviors, in the
absence of availability of proper guid-
ance by service providers. Apprehension
about the child’s uncertain future, con-
stant worry about the child’s insecurity,
disruptive behaviors, and associated
medical conditions of the children were
a few enduring challenges faced by the
parents of adolescents with ASD. For
some parents, comparison with children
of a similar age group caused emotional
turmoil. Some parents reported feeling
embarrassed at societal responses, indi-
cating the public’s lack of awareness
and acceptance of the special children. A
few parents reported losing confidence,
revealing their anxiety and mental
status. Our findings were in agreement
with the literature reporting perceived
burden, depression, and stress in fami-
lies of children with ASD.11,19–22
Our findings provide a first-hand,
in-depth account of parental perspectives
on reasons for discontinuing medical
and rehabilitation services in the cultural
context of India. It has several implica-
tions for authorities and professionals in
the educational and mental health reha-
bilitation service sector. There is a need
for the rehabilitation sector to address
269
 Noori et al.
these issues by improving the training
facilities for adolescents with ASD, train-
ing professionals to address the needs of
families with ASD, conducting awareness
programs for parents and health care
professionals about the available reha-
bilitation services, and addressing the
physical and mental health of caregivers.
Additionally, these results help policy-
makers identify the needs and plan for
the welfare of adolescents with ASD. Our
results further emphasize the need for
scaling up mental health services for the
families of adolescents with ASD.22
One of the limitations of this study was
that the diagnosis and severity of ASD
were based on secondary data. Likewise,
the diagnosis of comorbid psychopa-
thology was parent-reported. The direct
assessment was, however, not feasible,
given the pandemic and lockdown during
the study period. The findings of the
study are applicable to the Indian context.
However, differences may be noticeable
based on the geographical area and socio-
economic status of the sample.
Conclusion
This study provided a range of reasons
for the discontinuation of rehabilitation
services (such as logistic difficulties, finan-
cial difficulties, family commitments,
difficulty handling the child, lack of sat-
isfaction with the existing treatment,
and lack of improvement) and potential
barriers to avail rehabilitation services
and parenting challenges (viz. difficulty
in managing the changes during ado-
lescence, disruptive behaviors of the
child, difficulty to manage the child out-
doors, associated medical conditions
of the child, and worries about the cog-
nitive abilities of the child)  relevant to
the Indian context. These findings have
implications for professionals in the edu-
cational and mental health rehabilitation
sector as well as policymakers to support
rehabilitation services and improve the
quality of life for families of adolescents
with ASD.
Declaration of Conflicting Interests
The authors declared no potential conflicts of
interest with respect to the research, authorship,
and/or publication of this article.
Funding
The authors received no financial support for the
research, authorship, and/or publication of this
article.
270 Indian Journal of Psychological Medicine | Volume 45 | Issue 3 | May 2023
clinical care. J Autism Dev Disord 2002;
ORCID iD 32(4): 299–306.
Shivani Tiwari https://orcid.org/0000-0002- 12. Baghdadli A, Brisot J, Henry V, et al. Social
4345-5000 skills improvement in children with
high-functioning autism: A pilot
Supplemental Material randomized controlled trial. Eur Child
Supplemental material for this article is available Adolesc Psychiatry 2013; 22(7): 433–442.
online. 13. Sandelowski M. Focus on research
methods: Whatever happened to qualita-
References tive description. Res Nurs Health
2000; 23: 334–340.
  1. American Psychiatric Association.
14. World Health Organization, WHO.
Diagnostic and statistical manual of mental
Recognizing adolescence, https://apps.
disorders. 5th ed. American Psychiatric
who.int/adolescent/second-decade/
Publishing, 2013; 31-86.
section2/page1/recognizing-adolescence.
  2. Subramanyam A, Mukherjee A, Dave
html (1989).
M, et al. Clinical practice guidelines
15. Barun V and Clark V. Using thematic anal-
for autism spectrum disorders. Indian J
ysis in psychology. Qual Res Psychol 2006;
Psychiatry 2019; 61(8): 254.
3(2): 77–101.
  3. Laxman DJ, Taylor JA, DaWalt LS, et al.
16. Mahapatra P, Pati S, Sinha R, et al.
Loss in services precedes high school exit
Parental care-seeking pathway and
for teens with ASD: A longitudinal study.
challenges for autistic spectrum disorders
Autism Res 2020; 12(6): 911–921.
children: A mixed method study from
  4. Picardi A, Gigantesco A, Tarolla E, et al.
Bhubaneswar, Odisha. Indian J Psychiatry
Parental burden and its correlates in
2019; 61(1): 37–44.
families of children with autism spectrum
17. Rahman A, Divan G, Hamdani SU, et
disorder: A multicentre study with two
al. Effectiveness of the parent mediated
comparison groups. Clin Pract Epidemiol
intervention for children with autism
Ment Health 2018; 14: 143–176.
spectrum disorder in south Asia in India
  5. Mademtzi M, Singh P, Shic F, et al.
Challenges of females with autism: A
and Pakistan (PASS): A randomised con-
trolled trial. Lancet Psychiatry
parental perspective. J Autism Dev Disord
2015; 3(2): 128–136.
2018; 48(4): 1301–1310.
18. Manohar H, Kandasamy P,
  6. Roddy I and O’Neill C. Predictors of
Chandrasekaran V, et al. Brief parent-me-
unmet needs and family debt among
diated intervention for children with
children and adolescents with an autism
autism spectrum disorder: A feasibility
spectrum disorder: Evidence from Ireland.
study from south India. J Autism Dev
Health Policy 2020; 124(3): 317–325.
Disord 2019; 49: 3146–3158.
  7. Kuhlthau KA, Delahaye J, Erickson-
19. Pandey S and Sharma C. Perceived burden
Warfield M, et al. Health care transition
in caregivers of children with autism
services for youth with autism spectrum
spectrum disorder in Kathmandu valley. J
disorders: Perspectives of caregiv-
Nepal Health Res Counc 2018; 16(2): 184–189.
ers. Pediatrics 2016; 137(Supplement):
20. Johnson N, Frenn M, Feetham S, et al.
S158–S166.
Autism spectrum disorder: Parenting
  8. Meiring M, Seabi J, Amod Z, et al.
stress, family functioning and health-re-
Transition for adolescents with autism
lated quality of life. Fam Syst Health 2011;
spectrum disorder: South African
29(3): 232–252.
parent and professional perspectives.
21. Desai MU, Divan G, and Patel V. The
Front Psychiatry 2016; 7: 93, https://doi.
discovery of autism: Indian parents’
org/10.3389/fpsyt.2016.00093.
experiences of caring for their child with
  9. Hastings RP. Child behaviour problems
an autism spectrum disorder. Transcult
and partner mental health as
Psychiatry 2012; 49(3–4): 613–637.
correlates of stress in mothers
22. Adiukwu F, Filippis Renato de, Orsolini L,
and fathers of children with
et al. Scaling up global mental health ser-
autism. J Intellect Disabil
vices during the COVID-19 pandemic and
Res 2003; 47(4–5): 231–237.
beyond. Psychiatry online. Advance Online
10. McStay RL, Dissanayake C, Scheeren A, et
Publication, 2021, https://doi.org/10.1176/
al. Parenting stress and autism: The role
appi.ps.202000774.
of age, autism severity, quality of life and
problem behaviour of children and ado-
lescents with autism. Autism 2013; 18(5):
502–510.
11. Ghaziuddin M, Ghaziuddin N, and
Greden J. Depression in persons with
autism: Implications for research and