POKHARA UNIVERSITY

Bachelor of Architecture

Nepal Engineering College

A Report on

CHALLENGES OF AUTISTIC KIDS AND PRESPECTIVE OF

PARENTS ON RAISING THEM

By

Shrutika Shakya

019-237

Submitted To

Prof. Deepak Pant

Assist. Prof. Sweta Amatya

For

Directed Studies and Seminar

Department of Architecture

Date: 30 June, 2024

pg. 1
ACKNOWLEDGEMENT

I would like to express my deep gratitude towards Department of Architecture of Nepal

Engineering College, Pokhara University for the inclusion of Directive Studies as the course of
studies, in which we are granted an opportunity to make a choice of my topic of our interest as the
research study.
I would like to express my sincere gratitude to Professor Deepak Pant and Asst. Prof Sweta Amatya
for their valuable guidance, constant support and encouragement, which have been fruitful for the
completion of my research project.
I would like to thank all the personals involved during the conduction of my research for their
invaluable incites and time.
Lastly, I am thankful to my friends and parents for their constant support and encouragement.

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ABSTRACT

Autism is neurological and developmental disorder. Children with ASD often have problems with
social communication and interaction, and restricted or repetitive behaviours or interests. Caring
for a child with intellectual disability is a demanding task that requires lifelong commitment .
Parents, who primarily take up the role of caregivers, often go through a period of emotional
upheaval following the diagnosis of the condition. This report will review the experiences of
children with autism and their families and discuss the challenges they face. From the datas and
interviews this study can understand better perspective of their lifestyle and how can it be
improved .This study examines the relationship between the resilience and coping mechanisms of
parents of children with intellectual disability and the challenges of autistic kids.

Overall the abstract justifies the study by highlighting the complexity of autism, the challenges
faced by affected children and their families, and the importance of understanding their
experiences to potentially improve their quality of life.

Keyword: Autism, Neurological, ASD, Intellectual disability, Coping, Resilience, Quality of life

pg. 3
List Of Figures

Figure 1.Diagonosed case in Nepal.............................................................................................................. 7

Figure 2 age graph ....................................................................................................................................... 9
Figure 3 Level of au2sm ............................................................................................................................. 15
Figure 4 Graph of au2sm ........................................................................................................................... 17

List Of Tables

Table 1 parenting Stress categories ............................................................................................................ 20

Table 2 coping of parents ........................................................................................................................... 20

pg. 4
Table of Contents
Title page………….….…………………………………………………………………..……….i
Acknowledgement ……………..………………………………………………………..…….…ii
Abstract ……………….………………………………….………………………………………iii
List of figures………………………………………….…………………………..……………...iv
List of tables……………………………………..……………………….……….……………....iv

Chapter 1: INTRODUCTION ................................................................................................ 7

1.1 Introduction .............................................................................................................................. 7
1.1.1 Autism in context of Nepal....................................................................................................................... 7
1.2 Statement Of Problem ............................................................................................................... 8
1.3 Rationale ................................................................................................................................... 8
1.4 Aim And Objectives ..................................................................................................................................... 9
1.4.1 Aim:............................................................................................................................................................. 9
1.4.2 Objectives: .................................................................................................................................................. 9
1.5 Research Questions ................................................................................................................. 10
1.6 Limitation ................................................................................................................................ 10
1.7Methodology ............................................................................................................................. 11
1.8 Significance ............................................................................................................................. 11
1.9 Time Frame ............................................................................................................................. 12
Chapter 2: LITERATURE REVIEW .................................................................................... 13
2.1 Introduction to Autism ........................................................................................................... 13
2.1.1 Symptoms of Autism ................................................................................................................................. 13
2.2 Levels Of Autism ..................................................................................................................... 14
2.2.1 1st level ..................................................................................................................................................... 14
2.2.2 2nd level .................................................................................................................................................... 14
2.2.3 3rd level..................................................................................................................................................... 14
2.3 Connections Between Autism And Sensory Processing Disorder ............................................ 15
2.3.1 Autism Hypersensitivity ............................................................................................................................ 16
2.3.2 Autism Hyposensitivity ............................................................................................................................. 16
2.4 Reason For Increase In Autism ............................................................................................... 17
2.5 Challenges And Problems Of Autistic Kids ............................................................................. 18
2.6 Challenges Faced By Families Of Autistic Kids ...................................................................... 18
2.7 Coping Mechanism Of Parents ............................................................................................... 19
2.7.1 In context to Nepal .................................................................................................................................... 20

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 2.8 Roles Of Care Centers ............................................................................................................. 21
Chapter 3 : DATA COLLECTION AND ANALYSIS ............................................................. 23
3.1. Primary data collection .......................................................................................................... 23
3.1.1 Questionnaire and Interview ..................................................................................................................... 23
3.2 Secondary data collection ........................................................................................................ 23
3.3 Data analysis ........................................................................................................................... 23
Chapter 4: FINDINGS AND CONCLUSION ....................................................................... 35
4.1 Findings ............................................................................................................................. 35
4.2 Conclusion ......................................................................................................................... 35
Reference ...................................................................................................................................... 37
Annex............................................................................................................................................. 38

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Chapter 1: INTRODUCTION
1.1 Introduction
Autism, also known as autism spectrum disorder (ASD), is a developmental disorder that affects
communication and social interaction. It is a lifelong condition that is typically diagnosed in early
childhood. Parents of these childrens often struggle with the demands of the child’s condition,
additional financial needs, worry about the child’s future, poorly coordinated services, meeting the
needs of other family members, spending quality time with them, stigmatising experiences, and
lack of support. It is possible that autism has always been a common condition and people are just
beginning to capture the true prevalence due to better screening efforts.

1.1.1 Autism in context of Nepal

Care Nepal Society, about 300,000 children suffer from autism in Nepal. Awareness about autism
is very scarce and next to non-existent in most parts of the nation. ASD affects the way people
communicate, behave, or, interact with others, and generally, these symptoms manifest at the
young age of 12 months to 2 years.
There has been growing awareness in Nepal about autism. In the last decade, ACNS has seen a
steady rise in the total diagnoses from just 11 in 2008 to over 300 in 2022. Nepal's 2021 Census
reported 4,886 individuals with autism out of 647,744 people surveyed, which is 0.8% of the
sample.

Figure 1.Diagonosed case in Nepal

Adding to the fact that the cases of Autism is increasing the government has been slow to act.The
Disability Act 2074 has classified disability into four categories on the basis of severity: namely
profound (A), severe (B), moderate (C) and mild (D). Individuals in each group get assigned a
different coloured identity card with which they can access different levels of care and privileges.
But with autism, children often do not get assigned the correct card.
An expert said “Although an autistic child may need the same level of care as someone with leprosy,
they are only assigned category B, while those with physical disabilities are assigned group

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A,”.Such misplaced categorisation means the child’s family receives a lower allowance which falls
short of helping them afford necessary therapy.

1.2 Statement Of Problem

According to the Centers for Disease Control and Prevention (CDC), about 1 in 54 children in the
United States have been diagnosed with ASD. The current study,however, updates this figure and
estimates that roughly 1 in 40 children in the US have a diagnosis of autism spectrum disorder.
According to the World Health Organization (WHO), approximately 1 in 160 children worldwide
has ASD.
Saying so, Living with autism can be challenging for children and their families. Children with
autism may have difficulty with social interactions, communication, and may exhibit repetitive
behaviors or have sensory processing differences. The stress of having a child with intellectual
disability causes impairment in fostering .The healthy coping mechanism plays the vital role for
parenting process. It is important to find out the most stressful areas and gives a serious thought to
encourage the use of healthy coping strategies to improve their mental health.

These challenges can affect their daily lives and can also create challenges for their families, who
may need to navigate the education system, access appropriate interventions and support, and find
ways to support their child's social and communication skills.

1.3 Rationale
In the last decade, ACNS has seen a steady rise in the total diagnoses from just 11 in 2008 to over
300 in 2022. However, the increase in cases of autism has also been linked to unhealthy dietary
practices, especially junk food by the mother during pregnancy. Following the Covid-19 pandemic,
doctors are also reporting an unusually high number of children with what they call ‘virtual autism’.
Excessive screen time before two years of age, they believe, is associated with a decrease in
cognitive and language development.
Autism risk grows steadily with fathers' increasing age, but accelerates with mothers' age after 30.
Prior studies have indicated that babies born to older women have higher risks of birth defects,
low birth weight and certain chromosome problems, such as Down syndrome.(fig a)

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Figure 2 age graph

By saying so that autism is increasing , families are still struggling .As the office head of Autism
Care Nepal Society (ACNS), Surendra Bajracharya has seen everything from a parent dying by suicide
due to being overwhelmed by his autistic child to children being caged in attics and enduring social
ostracisation because of their condition.
By addressing their unique needs and challenges, we can work towards creating a more inclusive society
where everyone has the opportunity to thrive. In summary, conducting a report study on autism from the
perspectives of both the child and parents is essential for gaining a holistic understanding of the condition
and improving support systems and interventions.

1.4 Aim And Objectives

1.4.1 Aim:
To understand and address about the challenges faced by childrens with ASD and learn a better
perspective of the parents/caretaker regarding raising a autistic child .

1.4.2 Objectives:
1. To learn about autism and it’s connection to sensory processing disorder
2. To learn about the Challenges faced by kids
3. To learn about roles of care centers
4. To understand the perspective of parents regarding raising an autistic kids.

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1.5 Research Questions

1. What is autism and it’s type any why is it increasing ?

2. What is the connection between autism and sensory processing disorder?
3. What are the challenges faced by children with autism, and what are the perspectives of
their parents regarding these challenges?
4. What coping mechanisms do parents employ to address the stress associated with raising a
child with autism, and what sdo they rely on?
5. How do they feel about seeking help and guidance from care centres ?

1.6 Limitation
Since the study is small and only included children and the parents who were able to share
about their experiences during an interview, these results may not apply to all autistic people.
Another limitation is that the study was designed and carried out by non-autistic (allistic)
person who have different perspectives from autistic people.
This research is fully based on the psychological study rather than the architectural aspect for
the place making .

pg. 10
1.7Methodology

Challenges of au6s6c kid and

prespec6ve of parents on raising them

1.8 Significance
• This study can provide valuable insights into the needs, challenges, and experiences of
families living with autism
• Reports can highlight gaps in existing services and support systems for families affected
by autism. By identifying areas for improvement, these reports can help service providers,
and organizations better tailor their offerings to meet the needs of families living with
autism.
• By amplifying the voices of parents and sharing their stories, this reports contribute to
creating a more inclusive and supportive environment for individuals with autism and their
families.

pg. 11
1.9 Time Frame

Activities Weeks
1 2 3 4
TOPIC SELECTION
LITERATURE REVIEW
CASE STUDY
DATA ANALYSIS
REPORT

pg. 12
Chapter 2: LITERATURE REVIEW
2.1 Introduction to Autism
Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain.
Some people with ASD have a known difference, such as a genetic condition. People with ASD
may behave, communicate, interact, and learn in ways that are different from most other people.
There is often nothing about how they look that sets them apart from other people. The abilities of
people with ASD can vary significantly. People with ASD often have problems with social
communication and interaction, and restricted or repetitive behaviors or interests. People with ASD
may also have different ways of learning, moving, or paying attention. It is important to note that
some people without ASD might also have some of these symptoms. For people with ASD, these
characteristics can make life very challenging.
“Autism is a severe disorder of communication, socialization, and flexibility in thinking and
behavior, which involves a different way of processing information and of seeing the world.”
(Jordan, R. 1999). It is a neurological disorder that limits a person's ability to function normally.
Behavioral abnormalities, social limitations, and impaired ability to communicate are the main
issues in this multifaceted disorder. The history of autism begins in 1911, when Swiss psychiatrist
Paul Eugen Bleuler coined the term, using it to describe what he believed to be the childhood
version of schizophrenia. Since then, our understanding of autism has evolved, culminating in the
current diagnosis of autism spectrum disorder (ASD) and informed by many notable events
impacting autism clinical research, education, and support.

2.1.1 Symptoms of Autism

Autism can also be associated with various symptoms and challenges, including:
• Sensory Sensitivities: Heightened sensitivity to sensory stimuli, such as lights, sounds,
textures, or tastes. They may be overwhelmed by certain sensory inputs, leading to
discomfort or distress.
• Communication Difficulties: Delayed speech and language development or might not
speak at all. Trouble with pragmatic language skills, such as understanding sarcasm or
maintaining a conversation.
• Intellectual and Learning Differences: A wide range of cognitive abilities, from
individuals with intellectual disabilities to those with average or above-average
intelligence.
• Motor Coordination Issues: Motor coordination difficulties, commonly referred to as
“motor clumsiness.”
• Difficulty With Change: Individuals with autism often prefer routine and predictability,
and sudden changes in their environment or schedule can cause distress.
While autism shares common characteristics, each person’s experience with the condition is
unique. Some individuals with autism may excel in specific areas, such as mathematics, art, or
music, due to their intense focus and attention to detail.

pg. 13
2.2 Levels Of Autism
Furthermore, to provide a more detailed understanding of how someone experiences their specific
type of autism in their daily life, autism is categorized into three distinct levels.
The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) is the standard
resource used to diagnose mental disorders by healthcare professionals in the United States.
Previously, autism was divided into five separate diagnoses. More specifically, the DSM-4
included autism within a category of disorders known as Pervasive Developmental Disorders
(PDDs). All PDDs in the DSM-4 included Autistic Disorder, Asperger’s Disorder, Rett’s Disorder,
Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise
Specified (PDD-NOS). The DSM-4 considered autism spectrum disorder to include Autistic
Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder.
Different levels of on the autism spectrum can be identified in autistic children depending on the
criteria and severity of their autistic features. It’s based on the presence of both social
communication difficulties and restrictive & repetitive behaviors as the level of severity for each
of these areas can vary greatly for different children with Autism.

2.2.1 1st level

Individuals with level 1 severity of autism simply require support. Their social communication
causes noticeable impairments unless support’s in place. While they’re able to talk in sentences,
interactions are affected. They may come across as awkward as they find it difficult initiating in
social interactions This results in atypical or unsuccessful responses when others attempt to
socially interact; there’s no backward-forwards flow of conversation.
Regarding repetitive and/or restricted behaviors, autistic individuals classified in level 1 typically
won’t function in one or more environment due to the inflexibility of behaviors. Also, while they’re
more likely transition between tasks easier than the other levels, it’s still difficult to manage.
Notably, there’s also lack in a level 1’s ability to plan and organize themselves, oftentimes requiring
support for such help.

2.2.2 2nd level

Level 2 severity of autism are classified as requiring “substantial” support. 2nd level individuals
may be able to say words and basic sentences but social impairments are still apparent. While they
may initiate social interaction at times, it’s usually very limited. Responses to people interacting
with them are typically reduced or abnormal, or limited to very narrow specific interests. While
individuals on the autism spectrum along level 2 are usually inflexible as far as changes go, at
times, they may be able to cope with some change but will usually increase stress levels. The strong
restrictive or repetitive behavior that’s common to people in the level 3, is a little more subtle to
people in level 2.

2.2.3 3rd level

When the child or individual requires “ very substantial” support throughout the day for the simpler
daily tasks. Regarding the social communication criteria, this individual is known to be extremely
limited verbally and non-verbally, doesn’t seek out interactions, and rarely respond when others
interact with them.3rd level individuals on the spectrum are immensely inflexible so much to the
point that it impacts all other areas of their life. Oftentimes if the routine is changed or disrupted,
extreme reactions occur. This is similar to the restrictive and/or repetitive behaviors that these

pg. 14
individuals display. These behaviors can be so strong that it may interfere with tasks in any
environment. And it can also be very distressing when moving from one activity to another. When
helping your loved one with 3rd level severity of autism, it’s essential to keeping slow and steady
and see how they react to each new element throughout the day.

Figure 3 Level of au/sm

2.3 Connections Between Autism And Sensory Processing Disorder

Autism and Sensory Processing Disorder are two distinct but closely related conditions that often
coexist, and they share significant connections in their symptoms and characteristics. While they
are separate diagnoses, the sensory processing difficulties observed in individuals with autism can
overlap with those seen in SPD.
• Intensity Hyper sensitive autistic people perceives light , color , smell with higher intensity
where as hyposensitive perceives in lower intensity than that of neurotypical people.
• Sensory overload Sensory overload happens when there is too much information to
process and it becomes overwhelming for the individual. The brains of autistic individuals
are not able to filter out irrelevant information such as background noise, patterns on walls,
the feeling of clothing or people moving.
• Gestalt perception Gestalt perception is the inability to filter foreground and background
information, so everything is perceived as a ”whole” rather than a combination of different
items. This can happen in any of the senses. Someone who experiences visual gestalt has
difficulty focusing on a single detail of a scene and finds it almost impossible to separate
it from the whole picture.
• Fragmented perception When too much information needs to be processed at the same
time, people with autism may not be able to break down the whole picture into meaningful
units, this is referred to as fragmented perception. An individual might process part of a
scene or sentence and completely ignore the other parts.
• Delayed perception Delayed processing is when the process of perception takes a much
longer time for those with autism than neurotypical individuals. This makes it hard to
understand or learn new things. Processing can become delayed if there is too much
information coming at once.
• Distorted perception Distorted perception is when senses get distorted or misinterpreted
such as seeing a small shop as smaller than it is, poor awareness of ones one body, double

pg. 15
 vision, or seeing everything in two dimensions. Distorted perception becomes worse in a
state of information overload.
• Sensory shut down Sensory shutdowns happen when someone can’t deal with all the
information coming in such as when they are experiencing a sensory overload. All or some
of the senses are being overloaded and the person is unable to cope. They manage the
overload by shutting down one or some of their sense to block out the stimuli and enable
another sense to work better. Often individuals will withdraw and retreat into their world
by ignoring any stimuli around them.
2.3.1 Autism Hypersensitivity
Hypersensitivity in autism can include hearing, seeing, or touching something that results in a
negative feeling. Autism Sensory Overload symptoms can differ from child to child, with some
children moving around, making odd noises, or touching hands to engage their senses.
Children experiencing sensory overload can often have a difficult time processing and
understanding where objects are. Other examples of hypersensitivity can include touching every
item and object in a room, listening closely to a group of noises to identify the most treble sound,
tearing paper, chewing and smelling excessively, inability to feel pain or warmth, and seeking out
noisy areas in their homes.
Hypersensitive children may be more prone to injuries since they do not experience pain. Due to
this inability, some kids may intentionally, or unintentionally, injure themselves in order to feel
pain-like sensations.

To Accommodate Hypersensitivity:
• Dim the lights in a room.
• Allow the child to wear sunglasses, a hat, or a visor to block overhead lights.
• Give the child earplugs or headphones to block out excess noise, especially in particularly
noisy environments.
• Use incandescent lighting, rather than fluorescent lighting.
• Ask the child for their permission before touching them.
• Buying clothing for the child that accommodates their personal sensitivity, such as tight
fabrics, tags, buttons, and scratchy fabric.
• Closing doors to eliminate noisy sounds and bright lights that could be distracting.
• Accommodating to the child’s food aversions, such as avoiding hot, cold, and spicy foods.
• Avoid using scented products in the home, , or on the child. This can include shampoo,
perfume, household cleaners, and air fresheners.
2.3.2 Autism Hyposensitivity
Hyposensitivity in autism occurs when a child has an abnormal response to sensory input. Similar
to hypersensitivity, symptoms of hyposensitivity can widely vary from child to child. Oftentimes,
children with this condition are sensitive to visual input, and will quickly get tired from reading or
will have difficulty finding objects, such as a book on a desk or a cereal box in a pantry.
Children who experience hyposensitivity often try to find sounds, and will listen to the TV or the
radio very loudly. Other examples of hyposensitivity can include licking inedible objects,
preferring strong tastes with meals, intensely hugging people, running or crashing into people,

pg. 16
having trouble balancing, crashing into objects or furniture, dropping objects, stumbling, and
swinging or spinning for long periods without getting dizzy or nauseated.
Children with hyposensitivity may not feel or experience pain and temperature like the average
child does, which can result in various injuries.

To Accommodate To Hyposensitivity:
• Give the child sensory-stimulating toys, such as fidgets or safe items to chew.
• Arrange furniture in the home to prevent your child from injuries. This can also include
padding hard edges and corners.
• Giving the child time to practice and use physical skills, like running and dancing.
• Allowing the child to swing, rock, and engage in other sensory-stimulating activities.
• Giving the child food and drinks they prefer, such as cold beverages or textured food.
• Using a firm touch.
• Using visual supports and aids for the child if they have trouble processing verbal
information.

2.4 Reason For Increase In Autism

Figure 4 Graph of au/sm

It is believed that the number of autistic patient in the country is increasing by 15 percent annually.
One in 54 children in the US are identified with ASD. The rates of diagnosed children have been
rising over the last several years. It’s unclear if this is because practitioners and parents are
becoming more aware of the disorder, or because ASD is becoming more common—or both. Boys
are four times more likely to develop ASD. Fewer girls are diagnosed, but some think that girls
simply may be better at m asking their symptoms.
ASD appears by age 2 or 3, sometimes within a baby’s first 6–12 months. Young children with
ASD often stall developmentally between 12 and 24 months, most notably in language skills and
responsiveness. They may not answer to their name or follow objects that others point out.
Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear
whether ASD is explained more by rare mutations with major effects, or by rare multigene
interactions of common genetic variants. Many genes have been associated with autism through
sequencing the genomes of affected individuals and their parents.

pg. 17
Autism may be underdiagnosed in women and girls due to an assumption that it is primarily a male
condition, but genetic phenomena such as imprinting and X- linkage can raise the frequency and
severity of conditions in males, and theories have been put forward for a genetic reason why males
are diagnosed more often, such as the imprinted brain hypothesis and the extreme male brain theory.
Maternal nutrition and inflammation during preconception and pregnancy influence fetal
neurodevelopment. Intrauterine growth restriction is associated with ASD, in both term and
preterm infants. Maternal inflammatory and autoimmune diseases may damage fetal tissues,
aggravating a genetic problem or damaging the nervous system.
Exposure to air pollution during pregnancy, especially heavy metals and particulates, may increase
the likelihood of an autism diagnosis. Environmental factors that have been claimed, without
evidence, to contribute to or exacerbate autism include certain foods, infectious diseases, phenols
used in plastic products, pesticides, brominated flame retardants, alcohol, smoking, illicit drugs,
vaccines, and prenatal stress.

2.5 Challenges And Problems Of Autistic Kids

Children with ASD often have marked differences from others in the way they communicate,
behave and learn. These differences can cause problems with social interactions, which in turn can
lead to problems at school, stress within their families and social isolation. They may become the
target of unkind jokes and bullying. In a crowded classroom, teachers may struggle to
accommodate their unique learning styles and needs.
Unless they have exceptional abilities or encouragement, teens with ASD may not continue their
education after high school. As they move into adulthood, they may have trouble getting and
keeping a job; they may need to rely on family members for a place to live. Almost 40% of teens
and adults with ASD spend limited or no time with friends.
It’s estimated that 2.21% of adults in the US have ASD. Not all were identified with the disorder
as children since there is no established diagnostic test for adults, it is more difficult to diagnose
ASD in them.

2.6 Challenges Faced By Families Of Autistic Kids

Ø Finances
Some parents may feel the burden of long-term finances with respect to raising a child on
the spectrum. The financial burden could take on many forms be it using personal transport
instead of public modes of transport, hiring a caregiver on a regular basis, quitting a job to
take care of the child, and rising expenses associated with raising a child. Sometimes
parents are unable to express or are hesitant to reveal their precarious financial situation
which can have an adverse impact on the family in general, down the road.

Ø Sibiling of autistic children

The siblings of individuals with autism have a variety of adjustment, coping difficulties
and impaired intimate relationships with their affected sibling.Research indicates that
siblings of children with autism are at risk of bearing the psychological and emotional brunt
of growing up alongside a child with behavioural difficulties. Many siblings have felt that

pg. 18
 their parents perceived their needs as being secondary, with more time and attention given
to the child with autism. Siblings of children with autism are significantly more likely
to experience depression than the general population. Apart from psychological problems,
exhaustion may affect siblings who may be responsible for domestic tasks and physical
care.

Ø Stress due to childcare duties

Caregiving to a child with ASD is no easy task. It comes with its own set of ups and downs,
challenges, and stress. Taking care of children with ASD may be a full-time job for some
families/parents as every child is unique. Each child has their own set of issues, severities,
and so on. Single parents and nuclear families especially face stress on account of taking
care of their children. Many times, they may not have the support and assistance of other
family members or extended family, etc, compounding their stress levels.

Ø Lack of Time for Self-Care

Without the support of a paid caregiver, extended family, or even close families, a parent
or parents find themselves struggling to care for their child, perform well at a job or even
multiple jobs, manage their home, and be a multi–tasker. This could mean limited or no
socializing, rest, exercise, hobbies and interests, and so on. The identity of the person is
subsumed with the primary focus being the care of the child/teen with their unique
complexities.

Ø Communication challenge
Verbal communication is a challenge for some children with ASD. For parents of such
children, communication is a problem that compounds the stress & anxiety of parents.
Parents face the challenge that their child is unable to communicate their needs and wants.
With children at times unaware of nonverbal communication and cues, the challenges of
parenting get compounded.

Ø Stigmatization
As there are many people on this planet, there are as many reactions to situations and
people. Not everyone is sensitive, kind, or accepting. Negative reactions impact the child
personally and the parents, the effects linger for some time, unfortunately.
2.7 Coping Mechanism Of Parents
When parents learn that the child is having some form of disability, it causes enormous
distress to them. They struggle to cope with the financial costs. Parents are also confronted with
new and unexpected experiences. Parents with disabled child may have higher levels of stress
and lower levels of well being than with normal children (Rangaswamy & Bhavani, 2008).
The birth of a special needs child is an event that affects all the family members and both their
internal and external relationships. The majority of families copes with the situation relatively
well and is able to continue their life normally.

pg. 19
2.7.1 In context to Nepal
Very limited research has been done regarding assessing the stress level and coping
strategies among parents of child with Intellectual disability in Nepal. About 1 percent of general
public have Intellectual disability and about 10 percent of individual with intellectual disability
also have a diagnosis of Autism. However, the line between these two conditions remains fuzzy.
Table 1 parenting Stress categories

Parenting Stress Categories Percentage

Low level of stress 0
Normal level of stress 3
High level of stress 21
Clinical level of stress 76
Source: Nepalese Army Institute Health Sciences
The above table shows the level of stress among the parents of children with intellectual
disabled children. Three fourth (76%) parents were in clinical significant stress and 21% parents
were in high level of stress.

Table 2 coping of parents

Coping Strategies Percentage

Positive reinterpretation and growth 88
Mental disengagement 70
Focus on and venting 81
Use of social support 92
Active coping 83
Denial 64
Religious coping 80
Humor 48
Behavioural disengagement 66
Restraint 75
Use of emotional social support 86
Substance use 29
Acceptance 82
Suppression of competing activities 86
Planning 87
Source: Nepalese Army Institute Health Sciences
The table presents that 88% respondent were used of positive reinterpretation and
growth coping strategies and mental disengagement coping strategies were used by 70%.
Respondents (81%) were used of focus on and venting coping. Highest 92 % respondent were
used of use of instrumental social support coping. Respondents 83 % were used active and 64 %
was used denial coping. Almost 80 % respondent used religious coping . Least respondents 48
% were used humour and 66 % respondent used behavioural disengagement . Three forth
respondent (75%) used restraint. Respondent (86 %) were used of emotional social support
coping.
Here respondents 29 % were used substance use coping and respondent (82%) used
acceptance, 86 % respondent used of Suppression of competing activities and finally 87 %
respondent used planning coping

pg. 20
2.8 Roles Of Care Centers
Autism centers specialize in the care, treatment, education, advocacy, and ongoing support for
children with Autism Spectrum Disorder (ASD). They offer programs for kids and their families
to navigate the unique challenges associated with ASD.
These centers offer an inclusive space that focuses on the child’s growth and finding learning
methods that work for them. Many of them use Applied Behavior Analysis Therapy, or ABA
therapy, to understand and work on certain behaviors. Roles of care centers are :

1. Teaches Valuable Life Skills

Everyone needs to learn life skills, like basic household chores, cooking, communicating with
others, organization, and personal care. Autism centers help children with autism learn the
importance of these skills and how to improve them.They provide hands-on learning experiences
that teach children how to care for themselves. These lessons often cater to the child’s home
environment to make them more relatable and easy to follow.

2. Helps With Social Skills

Children on the spectrum crave friendship but need extra help. They don’t always know which
behaviors are appropriate or how to interact in different social situations.Autism centers use
behavioral interventions to teach children how to interact with their peers. Learning how to interact
with others improves happiness, increases participation in community activities, and helps children
find a sense of belonging.

3. Provides The Children With A Sense Of Community

People on the autism spectrum often feel isolated from their communities. With the help of autism
centers, children with autism learn to join in on social activities and develop a sense of
community.Group learning from well-trained professionals helps children feel like they belong.
They must be in a place where they can be around other children with autism and their families.
When a child feels welcome, they are more likely to volunteer for activities and socialize with
their peers. Having a sense of community at a young age keeps children with autism from feeling
alone. It also gives them the tools to transition into an active role in the community as an adult.

4. Improves Motor Functions

Motor skills involve moving a specific body part or muscle group to perform a task. Developing
them is a vital milestone in any child’s development. Developing these skills can be more
challenging for children on the spectrum. Autism centers help by making long-term goals for your
child’s motor functions and breaking them down into smaller goals. An example of a small goal to
improve motor skills is learning to use a fork. Autism therapy options that focus on motor functions
might include ABA therapy, physical therapy, or occupational therapy.

5. Develops Independence
Learning life skills and behavior management in different environments helps children with autism
find independence in their daily lives. Early intervention allows them to learn how to be
independent at a young age. By the time they reach adulthood, they’ll be able to do many things
by themselves without relying on their parents for care. Being in a new environment gives children

pg. 21
on the spectrum the chance to learn away from their parents. This change promotes more
independent problem-solving. Around people who might not understand them as well, they will
learn to communicate their needs and express themselves.

6. Gives Parents Helpful Tools

Because of the active role they play in their children’s lives, parents are their most important
teachers. Programs at autism centers not only help children with valuable life skills, but they give
parents helpful tools to manage life at home. Autism centers encourage parents to stay involved in
their child’s treatment. They learn to capitalize on their child’s strengths to reinforce positive
behaviors. These skills improve your child’s home life and can build more productive routines in
your day-to-day. Read our helpful guide for parenting children with autism for more tips at home.

7. Increases Confidence
Autism therapies are customized to suit your child’s needs. By focusing on their specific strengths,
they can learn in a way that works best with them. When learning in a space catered to their specific
learning style, children with autism feel like they can succeed without becoming overwhelmed. In
turn, they become more confident in their abilities. The new skills developed in autism therapy
help them find their voice and develop a strong self-image. When they realize they can succeed in
learning and making friendships, they’ll be more enthusiastic to try new things, adept in unfamiliar
situations, and proactive in using effective coping mechanisms.

pg. 22
Chapter 3 : DATA COLLECTION AND ANALYSIS
3.1. Primary data collection

3.1.1 Questionnaire and Interview

For the primary data collection a set of questionnaires (refer to annex) have been prepared to ask
the Parents of autistic kids to understand the complexity of autism, the challenges faced by affected
children and their families, and to learn about the importance of understanding their experiences
to potentially improve their child’s quality of life.

3.2 Secondary data collection

The secondary data for this study is sourced from reputable journals and internet articles, as cited
in the bibliography. This approach involves a comprehensive review of existing literature and
online publications to gather valuable insights and statistics. By utilizing these credible sources,
the research gains a comprehensive understanding of the subject, rooted in established theories
and findings.

3.3 Data analysis

From the responses collected from the parents the analysis reveals a diverse range of
perspectives.

In terms of Gender distribution, 65% were male and 35% were female .

pg. 23
In terms of most challenging aspect of their child’s condition,55% of parents found
communication difficulties , 20% found Behavioral issues to be challenging , 40% of parents
found social interaction, 30% found sensory issues and 35% of parents found all of them
challenging .

Parents of children with autism face a myriad of challenges that significantly impact daily life
and long-term planning. These challenges include sensory sensitivities, communication
difficulties, and behavioral issues such as aggression or repetitive behaviors. Many children
exhibit specific preferences and aversions, such as fixation on certain activities or intense
reactions to sensory stimuli like glass objects. Communication barriers, ranging from speech
delays to difficulty interacting with unfamiliar people, further complicate social interactions and
daily routines. Access to appropriate therapies and support services can also be limited, adding
stress to families already managing multiple aspects of their child's care.

1.a Describe briefly regarding the challenges of the kid if you feel comfortable?
Parent no. 2
Ø She is scared of going to new places and is scared of places where there is lots of stairs
and will constantly look for support like walls to walk . She has speech delay problem.
She also obsessed with cleaning dishes so i have to leave at least one plate or anything for
her to do it otherwise she will start washing all the clean utensils.
Parent no.3
Ø To convey the message of irretations or problem.
Parent no.7
Ø Self-harming, others harming and property damage is challenging behaviors
Parent no.8

pg. 24
 Ø She doesn’t have any severe challenges that cannot be handled but its just that when she
is around people, she gets nervous and will start repeating after you constantly.
Parent no.9
Ø As a parent of a Autistic child it is always a worry for their future and the daily
challenges that comes with.
Parent no. 12
Ø My daughter has difficulty understanding and speaking. She also lacks social skills, have
some behavioral issues like meltdown when things don’t go her way and hard time being
calm. She has food sensitivity and only eats few safe foods.
Parent no. 13
Ø She repeats things we say when she gets nervous. She tends to like her own space and tv.
Parent no. 14
Ø She gets very aggressive and will scratch me everywhere. She cannot stand seeing
anything glass objects and will start breaking it. She is on her own world and we have to
live by it otherwise she gets very aggressive and hyper.
Parent no. 16
Ø Therapy Sessions in Nepal. We are not able to get enough sessions.

Parent no. 17

Ø My kids can communicate but he is different than others. Hard to adjust in new
environments. Picky eater, behaviour problems

Parent no. 18

Ø Partially follows commands and answers questions,communicates little bit with known
person but with unknown one doesn't communicate or interact, takes only limited food,he
doesn't like mashup things

Parent no. 19

Ø Can't go outside with kid.

pg. 25
In terms of experience of stress levels for the parents,55% of parents were found to have high
level of stress whereas, 45% were found to have normal level of stress related to their child’s
condition.

In terms of areas parents found the most difficult to manage,25% of parents found education to
be difficult, 5% found health care, 70% of parents found social activities to be difficult to
manage , 30% found Daily routine where as 20% parents found all of them to be difficult to
manage.

pg. 26
In terms of the parents work life ,20% of parents joined as autism care takers , 20% stopped
working,15% of parents had to reduce their working hour whereas 40% of parents had no such
significant impacts .

Talking about the most challenging social activity for their child,40% of parents found
interaction among their peers to be difficult for their child , 55% found family gatherings to be
challenging for their child , 50% of parents found Extracurricular activities to be challenging for
their child and 40% found public outings to be the most challenging social activity for their
child.

pg. 27
Regarding the handling of difficult behaviors from their child,25% of parents learned behavioral
therapy techniques , 15% were found to seek advice from professionals , 45% of parents reached
out to parents support group and 70% were found to be managing on their own .

Talking about primary source of emotional support of the parent, 75% of parents had support
from their spouse or partner , 10% found to rely on friends , 25% of parents were found to have
support from family and 20% found support groups emotionally supportive.

pg. 28
In terms of coping the feeling of isolation and stress,45% of parents were found to connect with
other parents of autistic children , 30% were found to engage in hobbies and interest , 10% of
parents were found seeking guidance from therapist, 35% were found to socialize with friends
and family and 35% of parents relied on religious coping .

Regarding their aAendance at support group mee2ngs, the frequency varied widely. 45% reported
aAending occasionally, 30% reported aAending monthly,5% reported aAending weekly whereas 20% of
parents were found to not aAend the support group mee2ngs.

pg. 29
While asking parents regarding the type of trainings or workshops they have attended it was
found that 25% attended parenting strategies, 40% attended autism awareness, 25% of parents
attended behavior management workshops, 30% were found to have attended all of them
whereas 5% of parents were found to not have attended any of the trainings or workshops.

While asking parents if they find it challenging to balance their child’s need with those of other
families need about 75% of parents were found to have it challenging whereas 25% were found
to not have it as challenging as others.

pg. 30
While some parents explained briefly regarding their challenges ,it is found that Parents of
autistic children face diverse challenges: navigating differing parenting styles within the family,
finding crucial support amidst external criticism, and managing intensive caregiving needs from
daily routines to social interactions. These experiences highlight the complex and individualized
nature of supporting autistic children within familial contexts.

11.a. Do you find it challenging to balance your child's needs with those of other family
members? *please elaborate if feels comfortable *
Parent no.1
Ø Children with autism require some kind of a strictness throughout their day. Be it in their
routine for while discipling them. Older family member generally coddle children and try
to soothe them when they are angry or throwing a tantrum. This goes against how
children with autism need to be disciplined. This boundary between strictness and
coddling usually leads to disagreements among family members.
Parent no.2
Ø Thankfully i have a very supportive son and daughter in law who helps me take care of
her and understands her need .Even though there are close relatives who back bite but i
don’t care as long as i have my sons support to look after her .
Parent no.8
Ø Its not that hard . Everyone is supportive and looks after her even her yourself brother is
very mature for his age I believe because of his sister’s condition.
Parent no.9
Ø It’s much difficult sometime to manage schedule and routines especially for our older
child due to challenges we face having a autistic child.
Parent no.10
Ø He needs more attention even while performing basic daily routines otherwise he ends up
throwing tantrum . He has difficulty in understanding things but he is good at copying
what others do and imitates the action (main reason for not sending him school as he
learns different bad activities and behaviors from other kids at school)he has no sense of
judgement . He has no sense of taste and cannot communicate well but even so he is very
social and loves people interactions. He needs more attention even while performing
basic daily routines otherwise he ends up throwing tantrum . He has difficulty in
understanding things but he is good at copying what others do and imitates the action
(main reason for not sending him school as he learns different bad activities and
behaviors from other kids at school)he has no sense of judgement . He has no sense of
taste and cannot communicate well but even so he is very social and loves people
interactions .
Parent no.11
Ø As a mother it is very difficult for me to manage his daily routine as he is not verbal and
doesnt know his needs . I need to constantly look after him to see if he is hungry or needs

pg. 31
 to go to bathroom . Need 24/7 supervision. Since he is very good at imitation i need to be
careful of my actions.
Parent no. 13
Ø Since she cannot socialize like normal girls her age she gravitates towards smaller kids
which people ( extended relatives) dont usually understand. So we have to try to keep her
contented with other stuffs like watching tv .

Parent no. 16
Ø We are always occupied with our child. Cant take them anywhere, can't sit and eat at
restaurants coz the child can't stay at a place, child is picky eater so doent eat outside.

Parent no. 18
Ø At first they don't understand him and we need to work hard on parents too to make them
understand and accept him as what he is.

According to the parents , 40% of the children thrives on sensory-friendly environment, 20%
thrives on socially supportive environment,30% thrives on Physically active environment and
55% of children thrives on clam and organized environment.

pg. 32
Lastly , while asking parents if they feel like the health care and organizations understands their
child’s need or not , it was found that 35% agreed , 45% had neutral feeling and 15% disagreed
and one of the parent highlighted the fact that there has only been one institution that has helped
her child.

For those parents who considered to explain briefly , they highlighted various beneficial features
in care centers for their autistic children: sensory playgrounds, therapy sessions (speech and
occupational), sensory-friendly dental rooms, and opportunities for personal development like
learning daily chores and engaging in music therapy. However, challenges such as ineffective
medical treatments were also noted. Overall, these centers play a crucial role in supporting
autistic children's development and well-being, though individual experiences vary widely.

13.b If yes then, have you noticed any specific features within the care center that have
been beneficial for your child’s development and well being?
Parent no. 1
Ø To some extent, yes. Sensory playgrounds, speech therapy, occupational therapy are
beneficial for the children.
Parent no. 2
Ø Yes i have she has learned to do her own daily chores without anyones help . That is all i
want for my child as long as i live. And even after i die i am thankful that there is this
sanstha who will be there for her . So i am happy and contented with my life.
Parent no.8
Ø Yes and no. We have been to too many doctors and therapist but only now after so many
hit and trials she is getting better .
Parent no. 11
Ø For me its a no because we have gone to so many doctors for answers.as a child he used
to have so many seizures and high fever (108)but no doc or medication would fix that .
Instead of that ,going to tantrik , vaidyas and undergo traditional treatment * dhoop balne

pg. 33
 * jhar fuk . It instantly worked. So doctors were not much of help beside diagnosing him
with mix of autism and Down syndrome.
Parent no. 12
Ø The dentist has sensory friendly room for autistic children.
Parent no.13
Ø Yes i have . After joining her in this /school she has started to do her own works like
doing her own dishes , washing clothes which is a huge accomplishment for us and in
addition to that due to occupation therapy she is now able to go to work even if it is a
minor job but i am still happy she get to experience that and i get to experience the
process as well . And thanfully from this organization i am now able to volunteer here
and in pfpid
Parent no. 14
Ø At first it was very hard to diagnose her . People use to tell me she throws trantrum
because she is spoiled by our love . Only after she was 5 she started loosing
communication and ability to walk . She forgot all the basic skills like wearing clothes,
going to bathroom but now atleast she is able to do those things by her own . We also
admitted her to hostel jeevan uthan kendra but there was no significant change or
outcomes .
Parent no. 15
Ø She has always loved music and is always mimicking playing instruments on her mind
and the sanstha provided a platform for her talent . Even though she is non verbal and
doesn’t interact but she loves to play and enjoys musical therapies and classes.
Any suggestions?
Parent no.2
Ø She loves to play and is very active .she loves to play football and i hope in future there
will be enough space for her to run and play
Parent no.9
Ø We need much more awareness and support for both the kids and the parents as Autism
being a broad spectrum and kids within has different needs and necessities so that it can
be trailered and with correct therapy and care to assist them to be able to be a
independent and participate within the society .
Parent no. 15
Ø Provide musical friendly activities more and games

pg. 34
Chapter 4: FINDINGS AND CONCLUSION
4.1 Findings

Findings of the study revealed that Parents with ASD children face extreme difficulties in
dealing with challenging behaviors, teaching their child to communicate, teaching basic life
skills, guarding their child from danger, and preparing their child for adult life.Managing daily
routines and social activities poses considerable difficulties for parents, with social activities
(70%) and daily routines (30%) identified as particularly challenging areas.
In addition, most parents faced social problems such as social blame, social isolation, and
ignorance from their relatives and society due to the atypical behavior of their child.
Furthermore, the economic problem was also acute due to job loss, costly medical treatment, and
therapies.

So, to deal with the stressors they faced, parents adopted various coping strategies .High levels of
stress are prevalent among parents, with 55% reporting significant stress related to their child's
condition. Coping mechanisms such as engaging in hobbies, seeking support from family and
friends, and attending support group meetings are commonly employed.

Parents also highlight the benefits of sensory-friendly environments, occupational therapy, and
specialized educational settings, despite challenges with medical treatments.And added their
various suggestions for improvement include a call for greater awareness, support, and
personalized therapies to help autistic children achieve greater independence and integration into
society.

In summary, while there are significant challenges, there are also crucial supports and strategies
that can positively impact the lives of autistic children and their families when effectively
implemented and supported.

4.2 Conclusion

The prevalence of autism in Nepal is gradually being recognized, with reported cases increasing
over the years. By understanding the perspectives of parents of children with autism spectrum
disorder (ASD) is crucial for architectural improvements because it allows to create
environments that are sensory-friendly, safe, inclusive, and supportive of therapeutic
interventions.

By amplifying the voices of families and individuals affected by autism, and by leveraging
insights gained from this study, Nepal can take strides towards building a more supportive
environment that embraces neurodiversity and ensures that every individual, regardless of their
abilities, has the opportunity to lead a fulfilling life.

pg. 35
In conclusion, while the journey for parents raising children with ASD in Nepal is fraught with
obstacles, there exists a foundation of support and strategies that, when effectively implemented
and enhanced, can significantly improve outcomes for both children and their families. By
addressing the identified challenges and amplifying the voices of affected families, Nepal can
move towards a more inclusive and supportive environment where every individual, regardless
of ability, can thrive and contribute meaningfully to society.

pg. 36
Reference

Yugottam K, August 2023, Why are autism cases rising in Nepal, Nepal times,
https://nepalitimes.com/here-now/why-are-autism-cases-rising-in-nepal# , May 13

Bhawani. July 2014. Stress and coping Mechanism among the parents of Intellectual Disable Children.
Journal of advanced academic research(JAAR), Vol 1(II). 56-61.

Aadil. November 2014. Challenges faced by families of autistic Children. Researchpublish, Vol 2(I). 64-
68.https://www.researchgate.net/publication/356595671_Challenges_Faced_by_families_of_Autistic_Chi
ldren

Derrick Appiah, January 2023, Navigating the Challenges of Autism,

https://www.linkedin.com/pulse/navigating-challenges-autism-review-experiences-children-appiah, May
20.

Aston, G. (2000) Through the eyes of autism. Good Autism Practice Journal. 1(2). p.57-61.

Aaron Kandola, January 2024, Levels of autism: Everything you need to know,
https://www.medicalnewstoday.com/articles/325106 , May 15

Nepalese Army Institute Health Sciences. Autism Spectrum Disorder in Nepal: Challenges and Coping
Strategies.

Jordan, R. (1999). Introduction to Autism Spectrum Disorder: Symptoms, Levels, Challenges, Coping
Mechanisms, and Roles of Care Centers.

Manju Shrestha. Navina Shrestha. Yugant Khand. Lhamu Sherpa, April 2023, Perceived caregiver’s
burden among children with autism spectrum disorder in central Nepal – A cross-sectional ,
studyhttps://www.researchgate.net/publication/369969024_Perceived_caregiver's_burden_among_childre
n_with_autism_spectrum_disorder_in_central_Nepal_-_A_cross-sectional_study, May 20

Shrestha, M., Suwal, R., Thapa, N., Thapa Chhetri, S. ., Kunwor, B., Regmi, S. K., Shrestha, O., &
Mehta, B. (2024). Early Behavioural Signs among Nepalese Children with Autism Spectrum Disorder: A
Descriptive Cross-sectional Study. Journal of Nepal Medical Association, 62(271), 207–210.
https://doi.org/10.31729/jnma.8499

pg. 37
Annex
Questionnaire

A. Gender of the child?

o Male
o Female

1. What is the most challenging aspect your child's condition?

o Communication difficulties
o Behavioral issues
o Social interactions
o Sensory Sensitivities
o All of them

1.a Describe briefly regarding the challenges of the kid if you feel comfortable?

2. How much do you experience stress related to your child's condition?

o Low level
o Normal level
o High level
o Clinical level

3. Which area do you find most difficult to manage?

o Education
o Healthcare
o Social activities
o Daily routine
o All

4. How has your child's condition affected your work life?

o Reduced hours
o Changed jobs
o Stopped working
o No significant impacts
o Joined as autism care taker

5. Which Social activity is most challenging for your child?

o Interactions
o Family gathering
o Extracurricular activities
o Public outing

6. How do you usually handle difficult behaviors from your child?

o Behavioral therapy techniques
o Seeking advice from professionals
o Support from family members

pg. 38
 o Managing on your own

7. What is your primary source of emotional support?

o Spouse or partner
o Friends
o Extended family
o Support group

8. How do you cope with feelings of isolation or stress?

o Connecting with other parents of autistic children
o Engaging in hobbies or interest
o Talking to the therapist
o Socializing with friends or family
o Religious coping

9. How frequently do you attend support group meetings?

o Weekly
o Monthly
o Occasionally
o Never

10. What type of training or workshops have you attended?

o Parent strategies
o Autism awareness
o Behavior management
o None
o All of the above

11. Do you find it challenging to balance your child's needs with those of other family
members?
o Yes
o No

11.a Please elaborate above question if feels comfortable.

11. What kind of environment do your child prefer?

o Sensory- friendly environment
o Socially supportive environment
o Physically active environment
o Clam and organized

13.a Do you feel that healthcare professionals and organizations understand your child's
needs?
o Yes
o No
o 50-50

pg. 39
 13.b If yes then, have you noticed any specific features within the care center that have been
beneficial for your child’s development and wellbeing?

pg. 40