Report: Autism in South Asia - Issues of Age, Ethnicity, and Gender

This report provides a systematic review of Autism Spectrum Disorders (ASD) in South Asian countries, addressing the prevalence, challenges, and available resources. It highlights the neurodevelopmental conditions associated with ASD, focusing on social and communication deficits, stereotyped interests, and repetitive behaviors. The report emphasizes the scarcity of information and the need for further research, particularly in the context of age, ethnicity, and gender issues. It discusses the policies and resources available in the United Kingdom and explores potential solutions for South Asian countries, including the adaptation of guidelines and treatments, such as the Parent-mediated intervention for Autism Spectrum disorders (ASD) in South Asia (PASS). The report aims to contribute to the evidence base required for policy decisions and effective allocation of resources and services, ultimately addressing the significant treatment gap and improving the lives of children affected by ASD.

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Age, ethnicity and gender issues in health and social care

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Abstract:
Autism spectrum disorders (ASD) are considers as the group of neurodevelopmental conditions
which are evaluated in the form of social and communication deficits, stereotyped interests and
also the repetitive behaviours. There are large number of children’s in the South Asian countries
which are identified with the ASD, and as per the estimations made by the Centres for Disease
Control and Prevention (CDC)'s Autism and Developmental Disabilities Monitoring (ADDM)
Network almost 1 in 68 children’s is diagnosed with ASD. The Commonness of ASD in
maximum south Asian countries is still unknown. The main purpose of this report was to
systematically review the studies available on the autism in the children’s of the south Asian
countries.
This report can be determine as an attempt to understand the scale of the issue and scarcity of
information in context of ASD in the South Asian countries. This report mainly contributes to the
evidence base required to conduct the further research and frame the policy decisions in context
of addressing this problem in the South Asian countries. Understanding of the occurrence of the
ASD in the identified region is important to ensure the effective allocation of resources and
services. This report further discusses the policies and resources available in United kingdom,
which can provide help in this context.

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Contents
Abstract:......................................................................................................................................................2
Introduction:...............................................................................................................................................4
Background:.............................................................................................................................................4
Aims and objectives:................................................................................................................................4
Methodology:..........................................................................................................................................4
Systematic Review:......................................................................................................................................5
Conclusion:..................................................................................................................................................7
References:..................................................................................................................................................7

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Introduction:
Background:
Autism Spectrum Disorders (ASD) are defined as the cluster of neurodevelopmental
conditions which fall under the social and communication shortfalls, typecast interests and dull
behaviours (American Psychiatric Association, 1994). Almost 1 in every 68 children’s are
diagnosed with the ASD in the South Asian Countries, and these number are estimated by the
Centers for Disease Control and Prevention (CDC)'s Autism and Developmental Disabilities
Monitoring (ADDM) Network (NCBI, 2014).
In Asia, almost 20% of the world’s populations are represented by the South Asian
Countries, and still countries of this region are not aware about the occurrence of ASD (SAARC,
2009). This region represents almost 8 countries that are Bangladesh, India, Pakistan, Nepal, Sri
Lanka, Bhutan, Maldives, and Afghanistan. This report conducts the systematic review of the
occurrence of the ASD in South Asia.
Aims and objectives:
The most important purpose of this report is to identify the deep research and knowledge
in context of the ASD in the South Asian countries. Further this report focus on the policies and
legislation conducted for this purpose.
This study is considers as an attempt in context of understanding the issue and scarcity of
information related to the ASD in the children’s of South Asian countries. This report also
highlights the policy decision taken by UK authorities for resolving the issue of Autism in their
countries and which can be adopted by the south Asian countries also for resolving this issue.
Methodology:
For the purpose of this systematic review we searched, collected, and review the articles
which are published by different authors in context of occurrence of the ASD in the children’s of
the South Asian countries. This systematic review was conducted in line with the study
conducted by authors in UK also.

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Systematic Review:
Autism is considered as the lifelong development disability which mainly affects the
manner through which people communicates and interacts with other peoples in the society. It is
defined as a spectrum condition which affects the individual in different manner. Children’s with
autism experience different types of impairments in the mutual interaction and communication
with the society, and this behaviour is also accompanied with the limited interests and inflexible
and dull behaviours (NICE, 2014). Children’s who are diagnosed with the ASD generally
experience the cognitive (thinking), learning, emotional and behavioural issues. AS stated by the
NHS (UK authority), almost 70% children’s diagnosed with the ASD have non-verbal IQ below
70., and almost 50% of the children have a non-verbal IQ below 50 (NHS, n.d.).
This disorder does not affect the single country or region but it is extended across the
globe, and different rates of occurrence of ASD are estimated. As stated by the Williams et al.
(2006), almost 20 children’s are diagnosed with ASD in every 10000 children’s. Further, as per
the report published by the global median almost 62 cases of autism are found in 10000
children’s (1 child out of 160 (Elsabbagh, 2012). The maximum number of children’s live with
the low income settings and they do not have any access to the treatment of autism. South Asia is
considered as the home of maximum number of children’s in the world, and as per the national
estimation in India, almost 5 million children’s are diagnosed with ASD between the age of 2-9
years (Arora, et. al, 2018). It must be noted that, these countries have large number of children’s
who are affected from the ASD, but still there is lack of knowledge on the occurrence of ASD in
these countries. As these countries are not much aware about the autism, because of which there
is lack of treatment. In case treatment is present then because of different reasons parents whose
children’s are suffered from the ASD fails to access it.
The two biggest barriers in context of treatment of ASD are lack of evidence and lack of
personnel who can provide treatments to the large number of populations. Another reason of lack
of treatment is lack of resources, and especially in case of families who have lower income. The
treatment gap for the interventions of the community in the south Asia is almost 100% and
research in terms of addressing the barriers to care for child mental disorders is defined as the
major challenge in global mental health guidance (Weissman, 2008). The biggest innovation in
context of reducing the treatment gap in terms of ASD is the adaptations of the guidelines and
treatments tested in the countries with high income for the purpose of meeting the local needs
and also facilitate the training of the non-specialist health workers (Sweetland, et. al, 2014).
During the period of 2013, guidance are issued by NICE that are social communication
interventions, and these interventions are considered as the only interventions which recommend
the treatment of core symptoms related to the ASD present in children (Rahman, 2016; Kasari,
2008).
However, it doesn’t matter where the south Asian children’s reside either in their own
countries or in UK; situation is not must different for them. Those south Asian children’s who

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resides in UK face similar issues related to the ASD (Theara & Abbott, 2015). It must be noted
that, there is large number of migration from the South Asian countries in the UK, and there are
number of immigrants who experience the parenting with the child who is suffering from ASD.
This can be understood through the example of Pakistani immigrant mothers who are
experiencing the parenting of autism child while residing in the Ireland. As stated by the Morton,
et. al. (2002), there is increase occurrence of autism in the Pakistani children’s who are attending
the Child Development Clinic in England in comparison of the other ethnic groups. The ratio of
the other genetic diseases in Pakistani children’s is almost 10 times higher as compared to other
children’s and this can be result of the cultural practice in context of the consanguineous
marriages (Habib & Kinsella, 2017). Further, it is estimated by the Emerson (2009), that almost
29% of the future population will suffered with the multiple learning disabilities in the England
and they will mainly belong to the British minority ethnic community. Emerson further stated
that rates are higher in terms of the Pakistani communities. Shah, et. al. (2004) stated that
mothers of Pakistan migrate in UK have less access to the treatment in the UK for the diseases
like ASD.
There is lack of support to the Pakistani mothers who are experiencing the parenting with
the child suffered from autism, and it is necessary that these mothers must get support in
expressing their issues related to the cultural or religious differences. However, this not the
situation only with the Pakistani mothers, as there are number of South Asian parents who are
facing the same issue of social and religious diversity in the UK. It is necessary that, such parents
must receive the support from the relevant authorities in the UK to address the requirements of
their children’s with ASD such as engagement of the children’s them in culturally sensitive and
constructive discussions (Habib & Kinsella, 2017).
In this context, the Department of Health published an update in the April 2014 to the
2010 autism strategy “Think Autism: fulfilling and rewarding lives, the strategy for adults with
autism in England: an update” (GOV.UK, 2014). This publication focuses on updating the
strategy, instead of replacing the strategy. This strategy mainly focuses on different areas:
 Formation of the communities which are more aware and accessible in terms of the
requirement of the people with autism.
 Encourage the local ideas, services, and projects for the purpose of helping the people in
their own communities by implementing the new models of care.
 By focusing on the advice and information related to the services.
In the year 2014-15, national investment of £4.5million is announced by the coalition
government for the purpose of delivering the objectives stated in the strategy. In this context,
government also introduced the Autism Innovation Fund for emerging the original and cost
effective keys, and also find new models related to the good practices. It is possible for the local
communities, NHS organizations, and third sector organizations in UK to bid for £1 million of
revenue funding in context of the autism innovation project bids, and £200,000 representing 6

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months revenue funding in terms of the national coordination of autism awareness and the
champions network. It must be noted that was available for third sector and voluntary groups
(Parkin. 2016).
Formative research conducted by the senior staff and also by the regional expert
adaptation, it is clear that PACT is the innovative method which can be used in the South Asia
for the purpose of addressing the potential barriers. This version of PACT stands for ‘Parent-
mediated intervention for Autism Spectrum disorders (ASD) in South Asia’ (PASS) (Divan, et.
al. 2015).
Various aspects and case series are evaluated at the formative stage of the research, and
this states that PACT was feasiable and appropriate approach for the purpose of delivering with
the children up to 9 years, and especially in most severely affected children’s of the South Asia
region. Originally, PACT intervention, PASS targets the social communicating issues. The base
of this intervention is that, children suffering from the ASD would reply in the improved
communicative manner of the parent communication related to their deficiencies. These
interventions include the one-one clinic and home sessions which are held between the health
workers and children’s accompanied with their parents (Juneja, et. al. 2014). The most important
purpose of this intervention is to increase the sensitivity and response of the parents to the
communication of the child and reduce over-directive parental responses be working on the
behaviour of the parents, and also by using the video feedback methods for the purpose of
addressing the interaction between the child and parents. Second further incremental
development related to the communication of the child by using different strategies.
Findings:
After considering provisions and facts of above stated section, it is clear that autism is the
disorder which is still not recognized by the number of countries because of less awareness of
this disease. This disease not only affects the children of any one country but it affects the
children of whole world. Almost 20 children of the South Asian countries in every 10000
children’s are diagnosed with the ASD. South Asian countries are considered as the place of
maximum children, and it is important that this country focus on the ASD treatments. In these
countries, children who belong to the lower income families does not have access to the
treatment of autism. Some other barriers are also there which restrict the access of children’s to
the treatments and these barriers are lack of personnel and lack of treatment.
In above stated review, there are number of authors who focus on the conditions and citizens of
the south Asian countries, but some authors also focus on the immigrants of these countries in
UK. Author stated that, South Asian children’s resides in UK face similar issues related to the
ASD. Parents in UK who are experiencing the parenting of children’s diagnosed with ASD
experience number of difficulties. For the purpose of resolving this issue, Department of Health
published an update in the autism strategy “Think Autism: fulfilling and rewarding lives, the

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strategy for adults with autism in England: an update”. These updates focus on resolving the
issues of migrants.
Discussion:
This systematic review is conducted after considering the work done by different authors in the
jurisdiction of UK or outside the jurisdiction of UK and this paper mainly focus on the children’s
of the South Asian Countries diagnosed with the ASD. It discuss the difficulties faced by the
parents to provide treatment to their children’s with ASD either these parents resides in the South
Asian countries or migrate to UK.
This paper defines the strategy adopted by the UK government in resolving these issues and also
highlights the PACT framework for the purpose of ensuring effective treatment to the children’s
diagnosed with ASD. South Asian countries can adopt the guidelines off PACT for the purpose
of ensuring effective treatment of ASD.
Conclusion:
Autism is defined as a spectrum condition which affects the individual in different
manner. Children’s with autism experience different types of impairments in the mutual
interaction and communication with the society, and this behaviour is also accompanied with the
limited interests and inflexible and dull behaviours.
This study is considers as an attempt in context of understanding the issue and shortage
of material related to the ASD in the children’s of South Asian countries. This report also
highlights the policy decision taken by UK authorities for resolving the issue of Autism in their
countries and which can be adopted by the south Asian countries also for resolving this issue.
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