Autism Spectrum Disorder: The Dilemma of Untimely Recognition, Intervention and Diagnostic Scales Obtainable at Indian Sub-continent

Source:
By:Kanimozhi Selvi

DOI: https://doi.org/10.30564/jpr.v2i1.673

Abstract:

The increasing prevalence of Autism Spectrum Disorder makes it as considerable issue worldwide. Recent studies addresses the hot topic of Mirror Neuronal System (MNS) confers behind the ASD. However, the cause is uncertain, Indian population prone to varied prenatal and postnatal factors of the condition. Indian parents and professional still be at the initial awareness phase of the spectrum. Years of delay in identification and intervention while comparing with world standards due to various Indian socio-economic and socio-cultural factors. Less availability of screening and diagnostic tools headed to relay on culturally irrelevant and expensive international tools. Government funded research initiatives developed ISAA, INDT-ASD, CASI and AIIMS Modified INDT-ASD as culturally relevant indigenous tools and available on practice. So far, the tools have their own advantages and limitations, requires further research and progression. Owing to scarcity of trained professionals for a wide population range, home based parent-mediated therapies be the most preferred mode of therapy. However, the therapeutic options vary with people. The study aimed to ascertain the present Indian scenario, look upon the awareness about the condition, availability of screening and diagnostic facilities, the early identification and timely intervention program. In addition, the study briefly confers the biological and clinical background of ASD. 

References:

[1] Allen-Meares, P., MacDonald, M., & McGee, K..Autism Spectrum Disorder Updates–Relevant Information for Early Interventionists to Consider. Frontiers in public health, 2016, 4: 236. [2] Arun, P., &Chavan, B. S..Development of a screening instrument for autism spectrum disorder: Chandigarh Autism Screening Instrument. The Indian journal of medical research, 2018, 147(4): 369. [3] Barua, M., Kaushik, J. S., & Gulati, S.. Legal provisions, educational services and health care across the lifespan for autism spectrum disorders in India. The Indian Journal of Pediatrics, 2017, 84(1): 76-82. [4] Bhargava, A.. School Education of Children with Special Needs in India with a Perspective on the Initiatives for Children with Autism, 2017. [5] Chakraborty, S., Thomas, P., Bhatia, T., Nimgaonkar, V. L., & Deshpande, S. N..Assessment of severity of autism using the Indian scale for assessment of autism. Indian journal of psychological medicine, 2015, 37(2): 169. [6] Charman, T., & Gotham, K.. Measurement Issues: Screening and diagnostic instruments for autism spectrum disorders–lessons from research and practise. Child and adolescent mental health, 2013, 18(1): 52-63. [7] Chlebowski, C., Green, J. A., Barton, M. L., & Fein, D.. Using the childhood autism rating scale to diagnose autism spectrum disorders. Journal of autism and developmental disorders, 2010, 40(7): 787-799. [8] Corsello, C. M..Early intervention in autism. Infants & Young Children, 2005, 18(2): 74-85. [9] Daley, T. C.. From symptom recognition to diagnosis: children with autism in urban India. Social science & medicine, 2004, 58(7): 1323-1335. [10] Daley, T. C., &Sigman, M. D.. Diagnostic conceptualization of autism among Indian psychiatrists, psychologists, and pediatricians. Journal of Autism and Developmental disorders, 2002, 32(1): 13-23. [11] Dalwai, S. H., Modak, D. K., Bondre, A. P., &Gajria, D.. Analysis of tools for diagnosing autism spectrum disorder in the Indian context. Acad J Ped Neonatol, 2016, 1: 555-62. [12] Dalwai, S., Ahmed, S., Udani, V., Mundkur, N., Kamath, S. S., & Nair, M. K. C.. Consensus statement of the Indian academy of pediatrics on evaluation and management of autism spectrum disorder. Indian pediatrics, 2017, 54(5): 385-393. [13] Deepthi, V., &Vineetha, S.. Study On Early Detection Of Autism Using Genetic And Kinematic Biomarker. In IOP Conference Series: Materials Science and Engineering, IOP Publishing, 2018, 396(1):012034. [14] Desai, M. U., Divan, G., Wertz, F. J., & Patel, V..The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder. Transcultural psychiatry, 2012, 49(3-4): 613-637. [15] Divan, G., Vajaratkar, V., Desai, M. U., Strik‐Lievers, L., & Patel, V.. Challenges, Coping Strategies, and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India. Autism Research, 2012, 5(3): 190-200. [16] Eapen, Valsamma. Early identification of autism spectrum disorder: Do we need a paradigm shift? 2016: 718-720. [17] Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcín, C, &Yasamy, M. T..Global prevalence of autism and other pervasive developmental disorders. Autism research, 2012, 5(3): 160-179. [18] Fernell, E., Eriksson, M. A., &Gillberg, C..Early diagnosis of autism and impact on prognosis: a narrative review. Clinical epidemiology, 2013, 5: 33. [19] Guthrie, W., Swineford, L. B., Nottke, C., &Wetherby, A. M..Early diagnosis of autism spectrum disorder: stability and change in clinical diagnosis and symptom presentation. Journal of Child Psychology and Psychiatry, 2013, 54(5): 582-590. [20] Hossain, M. D., Ahmed, H. U., Uddin, M. J., Chowdhury, W. A., Iqbal, M. S., Kabir, R. I.,& Hossain, S. W.. Autism Spectrum disorders (ASD) in South Asia: a systematic review. BMC psychiatry, 2017, 17(1): 281. [21] Jain, R., Juneja, M., &Sairam, S.. Children with developmental disabilities in India: age of initial concern and referral for rehabilitation services, and reasons for delay in referral. Journal of child neurology, 2013, 28(4): 455-460. [22] Juneja, M., Mishra, D., Russell, P. S., Gulati, S., Deshmukh, V., Tudu, P., & Durkin, M.. INCLEN diagnostic tool for autism spectrum disorder (INDT-ASD): Development and validation. Indian pediatrics, 2014, 51(5): 359-365. [23] Juneja, M., Mukherjee, S. B., & Sharma, S.. A descriptive hospital based study of children with autism. Indian pediatrics, 2005, 42(5): 453. [24] Kandasamy, P.. Early intervention of Autism Spectrum Disorder: translating research into practice. Indian Journal of Mental Health and Neurosciences, 2018, 1(1): 1-7. [25] Karanth, P., &Chandhok, T. S.. Impact of early intervention on children with autism spectrum disorders as measured by inclusion and retention in mainstream schools. The Indian Journal of Pediatrics, 2013, 80(11): 911-919. [26] Koegel, L. K., Koegel, R. L., Ashbaugh, K., & Bradshaw, J..The importance of early identification and intervention for children with or at risk for autism spectrum disorders. International journal of speech-language pathology, 2014, 16(1): 50-56. [27] Krishnamurthy, V.. A clinical experience of autism in India. Journal of Developmental & Behavioral Pediatrics, 2008, 29(4): 331-333. [28] Kumar, A., Juneja, M., & Mishra, D.. Prevalence of autism Spectrum disorders in siblings of Indian children with autism Spectrum disorders. Journal of child neurology, 2016, 31(7): 873-878. [29] Le Bel, R. M., Pineda, J. A., & Sharma, A.. Motor–auditory–visual integration: the role of the human mirror neuron system in communication and communication disorders. Journal of communication disorders, 2009, 42(4): 299-304. [30] Lindgren, S., &Doobay, A.. Evidence-based interventions for autism spectrum disorders. The University of Iowa, Iowa, 2011. [31] Malhi, P., &Singhi, P.. A retrospective study of toddlers with autism spectrum disorder: Clinical and developmental profile. Annals of Indian Academy of Neurology, 2014, 17(1): 25. [32] Malhotra, S., &Vikas, A.. Pervasive developmental disorders: Indian scene. Journal of Indian Association for child and adolescent mental health, 2005, 1(5). [33] Mamidala, M. P., Polinedi, A., PTV, P. K., Rajesh, N., Vallamkonda, O. R., Udani, V., ...& Rajesh, V.. Prenatal, perinatal and neonatal risk factors of Autism Spectrum Disorder: a comprehensive epidemiological assessment from India. Research in developmental disabilities, 2013, 34(9): 3004-3013. [34] Manohar, H., Kandasamy, P., Chandrasekaran, V., &Rajkumar, R. P.. Early diagnosis and intervention for autism spectrum disorder: Need for pediatrician–child psychiatrist liaison. Indian Journal of Psychological Medicine, 2019, 41(1): 87. [35] Monica Juneja and Smitha Sairam, Autism Spectrum Disorder - An Indian Perspective, book chapter, SMGroup. [36] McConachie, H., Parr, J. R., Glod, M., Hanratty, J., Livingstone, N., Oono, I. P.,& Garland, D.. Systematic review of tools to measure outcomes for young children with autism spectrum disorder, 2015. [37] Moulton, E., Bradbury, K., Barton, M., & Fein, D.. Factor analysis of the childhood autism rating scale in a sample of two year olds with an autism spectrum disorder. Journal of autism and developmental disorders, 2016: 1-14. [38] Mukherjee, S. B., Malhotra, M. K., Aneja, S., Chakraborty, S., & Deshpande, S.. Diagnostic accuracy of Indian Scale for Assessment of Autism (ISAA) in chidren aged 2–9 years. Indian pediatrics, 2015, 52(3): 212-216. [39] Oberman, L. M., Pineda, J. A., & Ramachandran, V. S..The human mirror neuron system: a link between action observation and social skills. Social cognitive and affective neuroscience, 2007, 2(1): 62-66. [40] Parsons, D., Cordier, R., Vaz, S., & Lee, H. C.. Parent-mediated intervention training delivered remotely for children with autism spectrum disorder living outside of urban areas: Systematic review. Journal of medical Internet research, 2017: 19(8). [41] Patra, S., &Arun, P.. Use of Indian scale for assessment of autism in child guidance clinic: An experience. Indian journal of psychological medicine, 2011, 33(2), 217. [42] Perera, H., Jeewandara, K. C., Seneviratne, S., &Guruge, C.. Culturally adapted pictorial screening tool for autism spectrum disorder: a new approach. World journal of clinical pediatrics, 2017, 6(1): 45. [43] Rahman, A., Divan, G., Hamdani, S. U., Vajaratkar, V., Taylor, C., Leadbitter, K., & Patel, V.. Effectiveness of the parent-mediated intervention for children with autism spectrum disorder in south Asia in India and Pakistan (PASS): a randomised controlled trial. The Lancet Psychiatry, 2016, 3(2): 128-136. [44] Raina, S. K., Chander, V., Bhardwaj, A. K., Kumar, D., Sharma, S., Kashyap, V.,& Bhardwaj, A.. Prevalence of autism spectrum disorder among rural, urban, and tribal children (1–10 Years of Age). Journal of neurosciences in rural practice, 2017, 8(3): 368. [45] Robins, D. L., Casagrande, K., Barton, M., Chen, C. M. A., Dumont-Mathieu, T., & Fein, D.. Validation of the modified checklist for autism in toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics, 2014, 133(1): 37-45. [46] Robins, D. L., Fein, D., Barton, M. L., & Green, J. A.. The Modified Checklist for Autism in Toddlers: an initial study investigating the early detection of autism and pervasive developmental disorders. Journal of autism and developmental disorders, 2001, 31(2): 131-144. [47] Ronald, A.. Problem children problem parents. Indian Journal of Pediatrics, 1944, 11(1): 20-29. [48] Rudra, A., Banerjee, S., Singhal, N., Barua, M., Mukerji, S., &Chakrabarti, B..Translation and Usability of Autism Screening and Diagnostic Tools for Autism Spectrum Conditions in I ndia. Autism Research, 2014, 7(5): 598-607. [49] Rudra, A., Belmonte, M. K., Soni, P. K., Banerjee, S., Mukerji, S., &Chakrabarti, B.. Prevalence of autism spectrum disorder and autistic symptoms in a school‐based cohort of children in Kolkata, India. Autism Research, 2017, 10(10): 1597-1605. [50] Russell, P. S., Daniel, A., Russell, S., Mammen, P., Abel, J. S., Raj, L. E., ...& Thomas, N.. Diagnostic accuracy, reliability and validity of Childhood Autism Rating Scale in India. World Journal of Pediatrics, 2010, 6(2): 141-147. [51] Samms-Vaughan, M. E.. The status of early identification and early intervention in autism spectrum disorders in lower-and middle-income countries. International Journal of Speech-Language Pathology, 2014, 16(1): 30-35. [52] Sheffali Gulati, Jaya Shankar Kaushik, BiswaroopChakrabarty, Lokesh Saini, Savita Sapra, NK Arora, RM Pandey, Rajesh Sagar, VK Paul, Shobha Sharma,“AIIMS Modified INDT-ASD Tool for Autism Spectrum Disorder” , The National Trust for the welfare of Persons with Autism, Cerebral Palsy, Mental retardation and Multiple Disabilities, Dept of Empowerment of Persons with Disabilities (Divyangjan), Ministry of Social Justice & Empowerment, Govt. of India. [53] Suma, K., Adamson, L. B., Bakeman, R., Robins, D. L., & Abrams, D. N.. After early autism diagnosis: Changes in intervention and parent–child interaction. Journal of autism and developmental disorders, 2016, 46(8): 2720-2733. [54] Taheri, A., Perry, A., & Factor, D. C..BRIEF REPORT: A Further Examination of the DSM.5 Autism Spectrum Disorder Criteria in Practice. Journal on Developmental Disabilities, 2014, 20(1): 116. [55] Varma, A., & Iskandar, J. W..Challenges in diagnosis of autism and the struggle of using western screening tools in different cultures.Psychiatrist's perspective. Indian pediatrics, 2014, 51(5): 356. [56] Vaughan, C. A.. Test review: E. Schopler, ME Van Bourgondien, GJ Wellman, & SR Love childhood autism rating scale. Los Angeles, CA: Western Psychological Services, 2010. Journal of Psychoeducational Assessment, 2011, 29(5): 489-493. [57] Venkatesan, S.. A Growing Trend in Pseudo-Diagnosis: A Field Study on Children Frequently Mistaken for Autism in India. Psychological Studies, 2015, 60(1): 91-100. [58] Vivanti, G., & Rogers, S. J.. Autism and the mirror neuron system: insights from learning and teaching. Philosophical Transactions of the Royal Society B: Biological Sciences, 2014, 369(1644): 20130184. [59] Volkmar, F. R., Chawarska, K., &Klin, A.. Autism spectrum disorders in infants and toddlers: An introduction. Autism spectrum disorders in infants and toddlers: Diagnosis, assessment, and treatment, 2008: 1-22. [60] Wong, C. M., &Singhal, S.. INDT-ASD: An autism diagnosis tool for Indian children. Indian Pediatr, 2014, 51: 355-6. [61] World Health Organization.. Autism spectrum disorders & other developmental disorders: From raising awareness to building capacity. Geneva: WHO Document Production Services, 2013. [62] waigenbaum, L., Bauman, M. L., Choueiri, R., Fein, D., Kasari, C., Pierce, K.,& McPartland, J. C.. Early identification and interventions for autism spectrum disorder: executive summary. Pediatrics, 2015, 136(Supplement 1): S1-S9.