Challenges of Autism to Parents of Sick Children

This research proposal explores the challenges faced by parents of children diagnosed with autism in Abu Dhabi, UAE. It aims to provide insights into the diagnosis and intervention procedures and offer recommendations to overcome the challenges.

Running head: CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 1
Research Proposal on the Challenges and the Coping Styles of Parents of Children Diagnosed
with Autism: A perspective from Abu Dhabi, UAE
Name
Professor
Course
Date

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 2
Research Proposal on the Challenges and the Coping Styles of Parents of Children
Diagnosed with Autism: A perspective from Abu Dhabi, UAE
Introduction
Autism spectrum disorder involves a set of various conditions that are related and affect
communication, behavior and social interaction among the victims. The effect of the disorder
ranges from mild to severe. In most cases, the sickness is seen from early childhood and
progresses into adulthood (Khamis, 2007, p.853). Though the disorder raises challenges
especially to caregivers, guardians and parents, most autistic victims have unique and high gifts
in specific fields. Some of the problems that parents experience include having to cope with
certain behaviors among the autistic children (Kelly, et al. 2018, p.7). These include
inappropriate invading or touching other people’s property and space, being highly honest about
the appearance of people, spinning around or flapping of hands, extreme displays, affect or
opposite and having fascination from particular items. Systematic attempts in UAE to educate
autistic children started in 1980s (Tseng, et al. 2017, p.613). Educating children with disabilities
was a matter of interest to advocates and policy makers in the country. Government sources
indicate that more than 2000 students are receiving programed special education in more than 20
centers under the ministries of social welfare and labor (Dukmak, and Aburezeq, 2012, p.127). In
most cases, parents feel stressed up and may not be able to cope while their personal lives and
health fall under risk. This becomes important for parents to have the needs for their children
addressed in time.
The number of autistic children in UAE (United Arab Emirates) continues to raise
eyebrows due to its increasing nature. The issue causes tremendous challenges to the parents and
caregivers of such children. However studies show that children who receive early interventions

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 3
show better outcome based on the functionality than the ones experiencing no intervention
(Thomas, 2017, p.98). This makes it critical to have the disorder diagnosed in good time to
improve functionality. Professionals and caregivers pay a key role in early diagnostic and
identification process of children. Early intervention and diagnosis improves the quality of
service that autistic children gets and increases the likelihood of having favorable outcomes. A
common problem that the professionals face involves a case whereby as the cases of autistic
children increases, the victims end up becoming more vulnerable to lack of diagnosis, over
diagnosis, or misdiagnosis altogether. The issue continues to draw attention of WHO (world
health organization) who have confirmed that many autistic children remain mislabeled or
unidentified as suffering from the disorder all over the world (Nahad, 2015, p.143). This aspect
means that unidentified victims fail to get timely attention and intervention that they require.
Thus the issue of autism diagnosis and early intervention also raises attention from many studies
globally.
The diagnosis instruments get continually amended and revised to increase the level of
reliability and accuracy. Studies show that the attention that is given to the procedures of
diagnosis results to significant progress. Still there are needs that have to be met in the process of
early diagnosis and detection of autistic people. The concerned authorities and nations all over
the world continue working together with the WHO towards achieving diagnostic procedures
that are better (Fteiha, and Bustami, 2018, p. 135). This cooperation puts focus on adopting
better practices and sharing information about autism diagnosis. Based on this, the UAE has not
been left behind and works towards the improvement of the services in the nation through the
ministries of health, education and social affairs. This proposal falls within personal and
professional interest realm. There are various challenges that the teachers and parents of students

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 4
suffering from autism have been facing from the past (Tseng, et al. 2017, p.613). These parties
lack the access to important information regarding the nature of early identification procedures
and autism diagnosis. The challenge has caused delays for diagnosis of the sickness among the
affected children or students. The parents have faced some considerable level of disappointment
and confusion during and after the diagnosis process of their children (Bhuptani, 2017, p.51).
Moreover, despite having centers specialized in teaching autistic children, not all of them,
necessarily offer services of autism diagnosis. Misdiagnosis or lack of diagnosis negatively
affects the child’s social life, academic performance, and student placement. This is in addition
to the challenging effects on their communities and families both outside and inside the school
set up. At the same time, there lacks adequate number of professionals who have sufficient
qualification and experience in the diagnosis of autism in UAE, compared to the cases of
children who require appropriate diagnosis (Fteiha, and Bustami, 2018, p. 135). These are some
of the challenges that make this study proposal important in Abu Dhabi.
Problem statement and proposal purpose
The number of autistic children in UAE and especially Abu Dhabi continues increasing.
This increase in autism conditions creates a responsibility among parents and caregivers to
enhance early diagnosis and intervention procedures of the sickness to make it more affordable,
faster, reliable and accurate (Carpenter, Happé, and Egerton, 2019, p.34). The proposal aims at
providing an in-depth evaluation of the current challenges that parents of autistic children face in
relation to diagnosis procedures and care towards overcoming the sickness in UAE. It is meant to
explore the processes that parents follow towards achieving a diagnosis from the initial stage
abnormalities to the final stage of diagnosis from caregivers and professionals (Fteiha, and
Bustami, 2018, p. 135). The proposal focus on the lived experiences among parents of autistic

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 5
children regarding the difficulties faced during and before the process of having their autistic
children diagnosed (Kelly, et al. 2018, p.7). It is meant to bring attention about the current status of
diagnostic procedures and the deficits that exist about the services being offered in relation to
autism in UAE. It is also meant to evaluate recommendations towards overcoming the deficits
and bridging the gap between practice and theory on autism diagnosis (Mahmoud, 2017, p.62).
At the same time the study is aimed at saving the autistic children from being over diagnosed,
misdiagnosed or be left undiagnosed with the disorder due to its having similar symptoms with
other disabilities. The ultimate focus of the proposal involves supporting the autistic children and
families in getting timely and appropriate diagnostic services. The support would help the
parents to overcome some of the challenges they face when having to deal with autistic children
to become contributing members against the issue through a group of research-based
recommendations.
Research hypotheses
The following are the research proposal hypotheses;
 Many parents with autistic children in UAE face many challenges in relation to early
diagnosis and intervention of autism
 Some of the challenges can be solved through increased cooperation among stakeholders
Research proposal questions
The following are the questions to help raise data for the proposal;
 What are the challenges that parents of autistic children in UAE face in relation to early
diagnosis and intervention of autism?
 What are the solutions that help solve the identified challenges and to improve
satisfaction levels among the parents of autistic children?

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 6
 What are the stakeholders that help solve the problems that parents of autistic children
face in the country?
Literature review
Many studies classify autism in the same category with pervasive developmental
disorders but not under psychotic disorders. According to the ICD-10 in 1990, the disorder is
characterized by challenges unusual patterns of communication, social interaction reciprocity,
interests and activities that are repetitive and restricted communication (Gaad, 2019, p. 153). The
DSM-V characterizes autism, childhood disintegrative disorder, Asperger’s disorder, Rett’s
disorder and various other pervasive developmental disorders under one term such as autism
spectrum disorders which is acceptable by the standard of defining psychiatric disorders and
mental health of 2013 (Fteiha, 2017, p. 41). Each diagnosis lies along formalize d spectrums.
DSM-V enables adults and children who show autistic symptoms to be categorized easily
compared to the older systems of classification. However, professionals have the concern that
this system causes further confusion during the Asperger’s disorder diagnosis and that victims
lose the uniqueness for the disorder.
In most cases, autisms symptoms become apparent after 24 months but not all children
display the various symptomatic characteristics of this disorder (Aziz, 2015, p.78). This aspect
makes the diagnosis very much challenging. At the same time, the statements that caregivers and
professionals use to describe the children suffering from ADHD (attention-deficit/hyperactivity
disorder) are the same to those they use in describing children having autism. These similarities
create a greater challenge during autism diagnosis (Mahmoud, 2017, p.62). In most cases, the
parent or family doctors are the people who first notice unusual conditions with the children.

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 7
This then leads to some screening by physicians for them to see whether the child requires a
further diagnosis.
The children who fall on the extreme end of autism spectrum disorder are diagnosed after
24 months while those having Asperger’s or other milder forms of disorders are diagnosed later
in their lives. The milder cases fail to be diagnosed until the physicians discover that children
have difficulties in reading, communicating and writing at school (Anati, and Ain, 2012, p. 79).
The main reason why autism spectrum disorders need to be diagnosed at an early age is that it is
important to detect them long before the children enter the education system (Gaad, 2019, p.
153). At some cases, autism spectrum disorders have their onset marked by the CDD (childhood
disintegrative disorder) whereby children reach certain points in their life of development and
appear as if regressing to reduced stages of functioning onwards. When the regression starts
among the children, parents may become alarmed after which they go for help. The caregivers
and parents often experience various emotions as they go through the process of diagnosis.
Research that evaluated parents reactions after their children had been diagnosed with autism
differ significantly (Kelly, et al. 2018, p.7). Many of them become overwhelmed by the
condition and what it would become of their children later in life. Others become relieved as they
can focus on dealing with the condition unlike in a situation when no condition has been
identified after some time of experiencing problems with their children.
It is suggested that autism cannot be considered as a specific disorder since it exists as
sets of disconnected symptoms. This view is not applied by the medical community as it fails to
fit within the protocols of diagnosis and treatment system (Alkhanbashi, 2018, p.91). The
medical system requires that any disorder should be identified by specific name and its
associated treatment procedure. Research shows that early diagnosis of autism become stable

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 8
with time and this diagnosis can be done even after 48 months. It has been confirmed that early
autistic signs can be noted within six months but reliability in emergence of identified traits
increases towards 18 months and above. Autism forms a phenotype that is broad and this is a
key challenge during diagnosis of the disorder. The key diagnostic standard involves behavioral
observation (Kite, 2008, p.23). Differences in patient and symptomology form the greatest
challenge during the development of diagnostic procedures, which are accurate for all autistic
child cases. At the moment there is no medical or pharmacological test that confirms autism and
diagnosis in UAE.
Methodology
i. Research design
This involves the procedures of collecting data during the research proposal execution.
The proposal will make use of both qualitative and quantitative methodologies to have a
comprehensive overview of the issue being investigated. The qualitative design will involve the
use of strategies such as surveys using semi-structured questionnaires, direct interviews or the
use of phone calls that help provide primary data. Surveys will help reach all participants who
may not be available for the actual interviews and thus will have the opportunity of filing up the
questionnaire at their own convenient time and return back the filled questionnaires to the
researcher (Rafoul, 2015, p.39). This will save time of having to interview all of the participants.
However, this strategy will target those who can read and write. The quantitative design will
involve the use of literature review sources that provide secondary data.
ii. Population
The study will target the UAE population and specifically the people living within Abu
Dhabi. To make it easier, the researcher will have to identify a study population of 1000 people

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 9
who have autistic children at their homes. The study will also include guardians or caretakers to
autistic children in special care centers or their own homes.
iii. Study sample
From the 1000 people, the researcher will only identify 300 people who will become
participants for the study. They will be randomly selected to ensure that no biasness in the data
collected. Those selected will be eligible for direct interviews or survey questionnaires. The
participants need to have experience of having dealt with an autistic child at their homes for not
less than ten years. This makes them have much to share with the researcher regarding the
challenges they faced.
iv. Materials
These includes all the various resources that will help in data collection during the study
and include things such as financial, human, and instruments that help collect data. Phones,
questionnaires, pens and data analysis software will be involved.
Results analysis
Results analysis will be based on the type of data collected. Some of the data analysis
software will include the SPSS. Mean, standard deviation, and correlation will be calculated
from the data. The various models of data analysis include regression, one way ANOVA and
spearman correlation (Blackburn, Carpenter, and Egerton, 2012, p.45). Tables will help analyze
the processed data and will enable the researcher to quickly compare data outcomes for easy
conclusion.
Limitations
The various study limitations during the study proposal implementation will include the
following; first the study is only focused on one area of Abu Dhabi in UAE. This means that the

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 10
data collected will only be related to this area and would differ from the one collected form any
other region within the same country. The other limitation is that the study will target those
parents who have an experience of not less than ten years and those with an autistic child at their
homes. The questionnaires are for those people who can read and write and this creates a limit in
the data resource persons (Bernsen, et al. 2011, p.117). However, the interviews will target even
those who cannot read and write but can communicate in English fluently. The other factors that
limit the researcher may be time, and finances. However, proper planning and scheduling of
events will help solve any time and cost overrun.
Ethical issues
Ethical issues are bound to affect the way the study is done or data is collected and
managed. However, during this study the various ethical considerations will be avoided through
proper and well operated research. Studies need to be authorized by the relevant authorities
within the areas of interest. The researcher will seek a permit from the local administration
offices in targeted areas before proceeding to carry out the study. At the same time, researchers
need to seek the consent of the participants before engaging them in research. The identified
sample will be taken through their rights and the reason for the study so that they can willingly
share their information (Shayma Qahwaji, 2018, p.87). This will ensure that no one is forced or
tricked into sharing their personal information without their knowledge and willingness. Data
management and security is also an ethical issue to consider during the study. The researcher will
assure the participants that the data collected from them will not be disclosed to any third party
or used for other reasons except for the one intended. In this case, it will be the responsibility of
the researcher to make sure that the data collected is protected against the access by unwanted
persons.

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 11
Risk considerations
The various risks involved in the research proposal include psychological risks that come
as a result of participants experiencing changes in feelings, stress, depression, hallucination, guilt
or loss. Physical risks include physical injury to participants affecting their contribution to the
proposal. Social, economic and legal risks are related to data handling in relation to breach of
confidentiality.
Conclusion
From the analysis it can be concluded that parents of autistic children in UAE experience
challenges related to early intervention and diagnosis of the disorder. They suffer from stress as
they try to cope in situations where there are lengthy diagnosis procedures, lack of enough
caretakers and health professionals.

CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 12
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CHALLENGES OF AUTISM TO PARENTS OF SICK CHILDREN 14
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