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Year : 2021  |  Volume : 14  |  Issue : 4  |  Page : 432-433  

Need for autism spectrum disorder research in India

Department of Community Medicine, Dr. RPGMC, Kangra, Himachal Pradesh, India

Date of Submission27-Jul-2020
Date of Decision31-Jul-2020
Date of Acceptance14-Aug-2020
Date of Web Publication17-Jun-2021

Correspondence Address:
Sunil Kumar Raina
Department of Community Medicine, Dr. RPGMC, Kangra, Himachal Pradesh
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/mjdrdypu.mjdrdypu_416_20

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How to cite this article:
Raina SK. Need for autism spectrum disorder research in India. Med J DY Patil Vidyapeeth 2021;14:432-3

How to cite this URL:
Raina SK. Need for autism spectrum disorder research in India. Med J DY Patil Vidyapeeth [serial online] 2021 [cited 2022 Jun 25];14:432-3. Available from: https://www.mjdrdypv.org/text.asp?2021/14/4/432/318694

Autism spectrum disorder (ASD), a developmental disability, is characterized by persistent impairments in social interaction and the presence of restricted, repetitive patterns of behaviors, interests, or activities is being tracked by researchers and research bodies across the world since the Center for the Disease Control and Prevention (CDC) began this process in metropolitan Atlanta, Georgia, in the year 1996.[1],[2] Various studies conducted across the world report that more children than ever before are being diagnosed with autism, with a reported estimated increase of between 50% to over 2000%.[3],[4],[5] The distribution of data reported, however, is not uniform with some countries such as the USA through establishment of the Autism and Developmental Disabilities Monitoring (ADDM) Network, reporting on ASD prevalence more regularly than other countries.

One of the key findings of reports published by CDC says that in contrast to other developmental disabilities, the ADDM network reported higher ASD prevalence among more socioeconomically advantaged groups and among children classified as non-Hispanic white (white) than among other groups.[6] The reports suggest considerable variability in the magnitude of difference in the prevalence when classified by race and ethnicity.[6] These findings therefore inter alia point to organization of autism care around socioeconomics and demographic dividends. These findings, therefore, also point to the fact that the health-care providers, educators, researchers, service providers, and policy-makers will need comprehensive data across countries to identify the service needs of communities and help develop policies suited for the management of ASD.

Another important aspect that needs deliberation is that while the number of studies conducted on ASD is on the increase, the distribution of these studies across geographies is not uniform. It is seen that from 2003 to 2013, the number of peer reviewed articles increased from approximately 800 to over 3400 articles in a 12-month period but not much has come from our parts of the world.[7],[8]

The reported increase in the prevalence estimates of ASD is believed to have a huge impact on the living status of families caring for children with ASD. Estimates suggest that the life-time economic costs of ASD can be up to $2.4 million per affected individual.[9] The impact and the rise in the estimates, therefore, demands a need for accelerating research on ASD across all geographies and demographics, including low- and middle-income countries (LMICs) like India. A look at medical literature available in public domain reveals that there is a paucity of data on ASD from our part of India.[7],[8]

This despite the fact that research on ASD has increased dramatically in recent years worldwide. Without the availability of quality data on this health condition, it is always going to be difficult for health-care practitioners in India to develop interventions suited to our local conditions. It is also important to realize that in a country as diverse as our prevalence estimates of ASD, and their profiles may vary considerably within and between geographies. This difference could be true in nature or due to the methodological variability adopted by different researchers across the country. The differential distribution or not across regions in India will yield data diverse enough to plan interventions. To strengthen data collection, the development of uniform protocols and methodologies may be helpful as the first step. The development of such protocols should be the initial step for research on ASD in India. Beyond that ASD research must follow multidisciplinary approaches. As ASD manifests in form of multiple phenotypes, multidisciplinary perspective will be helpful. As a second step, the research should evolve from clinical psychology, developmental pediatrics, basic developmental neuroscience to cognitive neuroscience, and genetics, keeping the multi-disciplinary, noncompartmentalized multi-stakeholder approaches in view.

The third step in ASD research should target translational research with the development of a comprehensive treatment protocol for individuals with ASD as the focus. The required intervention researches should think about not only the core social communicative symptoms associated with ASD, but also with the research related to number of related impairments, including behavior and emotion regulation, gastrointestinal problems, sleep difficulties, and epilepsy.

This brings us to the point that even though the challenges associated with ASD may have impeded progress toward the development of research-informed and person-specific novel interventions, the diversity in symptoms and heterogeneity in presentation being an additional disadvantage; this cannot continue to be an excuse for continued lack of research on this subject. As the western world has been witnessing a remarkable progress toward understanding the pathophysiology of ASD in the past two decades, the benefits of this research seem to be limited to the west only. The advances in the research on ASD have received further impetus due to improvement neuroimaging technology, ASD genetics and Clinical research. These researches have not only led to the refinement of effective tools for the phenotypic characterization of ASD but also to the conceptualization of ASD more as a dimensional rather than a categorical disorder. It is time LMIC like India pick up from their western counterparts and come up with robust data on the different aspects of ASD.

  References Top

American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.  Back to cited text no. 1
Yeargin-Allsopp M, Rice C, Karapurkar T, Doernberg N, Boyle C, Murphy C. Prevalence of autism in a US metropolitan area. JAMA 2003;289:49-55.  Back to cited text no. 2
Baio J, Wiggins L, Christensen DL, Maenner MJ, Daniels J, Warren Z. et al. Prevalence of autism spectrum disorder among children aged 8 years – Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveill Summ 2018;67:1-23. [doi: org/10.15585/mmwr.ss6706a1].  Back to cited text no. 3
Autism and Developmental Disabilities Monitoring Network Surveillance Year 2002 Principal Investigators; CDC. Prevalence of autism spectrum disorders – Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2002. MMWR Surveill Summ 2007;56.  Back to cited text no. 4
Van Naarden Braun K, Christensen D, Doernberg N, Schieve L, Rice C, Wiggins L, et al. Trends in the prevalence of autism spectrum disorder, cerebral palsy, hearing loss, intellectual disability, and vision impairment, metropolitan atlanta, 1991-2010. PLoS One. 2015 29;10:e0124120.  Back to cited text no. 5
Autism and Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators; CDC. Prevalence of autism spectrum disorder among children aged 8 years – Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2010. MMWR Surveill Summ 2014;28;63:1-21.  Back to cited text no. 6
Raina SK, Kashyap V, Bhardwaj AK, Kumar D, Chander V. Prevalence of autism spectrum disorders among children (1-10 years of age) – Findings of a mid-term report from Northwest India. J Postgrad Med 2015;61:243-6.  Back to cited text no. 7
[PUBMED]  [Full text]  
Raina SK, Chander V, Bhardwaj AK, Kumar D, Sharma S, Kashyap V. Prevalence of autism spectrum disorder among rural, Urban, and tribal children (1-10 years of age). J Neurosci Rural Pract 2017;8:368-74.  Back to cited text no. 8
[PUBMED]  [Full text]  
Buescher AV, Cidav Z, Knapp M, Mandell DS. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr 2014;168:721-8.  Back to cited text no. 9


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