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Portraying the oddness of autism: My name is Khan; Indian Sesame street
Asian Journal of Psychiatry 30 (2017) 28
Contents lists available at ScienceDirect
Asian Journal of Psychiatry journal homepage: www.elsevier.com/locate/ajp
Letter to the Editor Portraying the oddness of autism: My name is Khan; Indian Sesame street
MARK
Sir, With the Sesame street broadcasting video on Julia (a muppet with autism), the western media has finally given autism its due recognition (Pasha et al., 2017). This effort of mass media is laudable for making an effort to understand autism and reduce the associated misconceptions. The target audience seems to be children and their care givers who are the first point of contact for any child with features of autism. This gesture by the mass media has been widely appreciated by the scientific community across the world as it is a fact that autism remains under-recognized and suffers from discrimination even in the western world. The video has made an excellent attempt at demonstrating the symptoms of autism which includes reduced social responsiveness, impaired communication skills and repetitive odd motor behaviors. It goes on explaining all these impairments in an understanding and accepting tone urging children and adults to accept autism as different way of living rather than oddness or madness. There are also visible attempts by the teacher to help Julia handle her meltdowns, echolalia and repetitive motor behavior. Indian mass media had made an equally good attempt at educating masses about autism by conceptualizing the character of Rizwan Khan, who was diagnosed with Asperger’s Syndrome only in his adulthood. The movie, ‘My name is Khan’ had showcased the social and communication difficulties which Rizwan had been handicapped with throughout his childhood. Rather than being diagnosed and treated his difficulties invited bullying and ostracism in the society. Sensitive handling of his unique needs and recognition of his strengths as well as perseverance of his mother is a vivid portrayal of an Indian parent’s struggle in seeking appropriate educational opportunities for their children with special needs. Children with autism are called ‘pagal’ (mad) in India and the disorder is often unrecognized by parents as well as medical practitioners (Divan et al., 2012). This under-recognition of the disorder is evident in terms of delay in help seeking resulting in a much later age of diagnosis (K et al., 2017). Services for autism in India are limited to be special schools and rehabilitation centers run by various Non Governmental Organizations (NGOs) under the National Trust Act (Barua et al., 2017). While the act in itself provides all provisions for training, care and support for children with autism and their families, the ground reality of the situation is not so rosy. Parents continue to suffer due to virtual absence of any provision for teaching and training and are often forced to create parent run organizations with limited scope and reach. The prevalence studies from different regions of India show a relatively lower rate of (0.15% in northwest, 0.23% in east and south) as compared to the global average of 0.5–1% (Raina et al., 2017; Rudra et al., 2017; Poovathinal et al., 2016). Methodological limitations of these regional studies justify the need to carry out scientifically robust national prevalence studies to estimate the exact burden of this common neurodevelopmental disorder in India. As per the Revised Persons with Disabilities Bill 2017, Government of India has recognized autism as a cause of disability (Notification-Rights of Persons with Disabilities Act, 2017). This recognition is a long overdue step towards providing appropriate legal and social support. Yet true benefits of the act would warrant improving functionality and reducing impairment which is only possible if the disorder is diagnosed early and provided with early intervention. Mass media can be a useful tool for educating about autism as well as dispelling the surrounding myths. Improving the help seeking behavior of parents of children with autism can definitely reduce the time lag in diagnosis and intervention. References Barua, M., Kaushik, J.S., Gulati, S., 2017. Legal Provisions, Educational Services and Health Care Across the Lifespan for Autism Spectrum Disorders in India. Indian J. Pediatr. 84 (1), 76–82. http://dx.doi.org/10.1007/s12098-016-2261-5. Divan, G., Vajaratkar, V., Desai, M.U., Strik-Lievers, L., Patel, V., 2012. Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Res. Off. J. Int. Soc. Autism Res. 5 (3), 190–200. http://dx.doi.org/10.1002/aur.1225. K, D.P., Srinath, D.S., Seshadri, D.S.P., Girimaji, D.S.C., Kommu, D.J.V.S., 2017. Lost time-Need for more awareness in early intervention of autism spectrum disorder. Asian J. Psychiatry 25, 13–15. http://dx.doi.org/10.1016/j.ajp.2016.07.021. Notification-Rights of Persons with Disabilities Act, 2017. Department of Disability Affairs. (n.d.). Retrieved June 29, 2017. (accessed on 29th june 2017). http://disabilityaffairs.gov.in/ content/viewpage/notification-rights-of-persons-with-disabilities-act?2017.php. Pasha, S.B., Qadir, T.F., Fatima, H., Hussain, S.A., 2017. Sesame Street’s recognition of autism. Lancet Psychiatry 4 (7), 520–521. http://dx.doi.org/10.1016/S2215-0366(17)30239-0. Poovathinal, S.A., Anitha, A., Thomas, R., Kaniamattam, M., Melempatt, N., Anilkumar, A., Meena, M., 2016. Prevalence of autism spectrum disorders in a semiurban community in south India. Ann. Epidemiol. 26 (9), 663–665. http://dx.doi.org/10.1016/j.annepidem.2016.07.003. (e8). Raina, S.K., Chander, V., Bhardwaj, A.K., Kumar, D., Sharma, S., Kashyap, V., ... Bhardwaj, A., 2017. Prevalence of autism spectrum disorder among rural, urban, and tribal children (1–10 years of age). J. Neurosci. Rural Pract. 8 (3), 368. http://dx.doi.org/10.4103/jnrp.jnrp_329_16. Rudra, A., Belmonte, M.K., Soni, P.K., Banerjee, S., Mukerji, S., Chakrabarti, B., 2017. Prevalence of autism spectrum disorder and autistic symptoms in a school-based cohort of children in Kolkata, India. Autism Res. Off. J. Int. Soc. Autism Res. http://dx.doi.org/10.1002/aur.1812.
Suravi Patra Department of Psychiatry, AIIMS Bhubaneswar, India E-mail address: [email protected]
http://dx.doi.org/10.1016/j.ajp.2017.07.008 Received 30 June 2017 1876-2018/ © 2017 Elsevier B.V. All rights reserved.
Contents lists available at ScienceDirect
Asian Journal of Psychiatry journal homepage: www.elsevier.com/locate/ajp
Letter to the Editor Portraying the oddness of autism: My name is Khan; Indian Sesame street
MARK
Sir, With the Sesame street broadcasting video on Julia (a muppet with autism), the western media has finally given autism its due recognition (Pasha et al., 2017). This effort of mass media is laudable for making an effort to understand autism and reduce the associated misconceptions. The target audience seems to be children and their care givers who are the first point of contact for any child with features of autism. This gesture by the mass media has been widely appreciated by the scientific community across the world as it is a fact that autism remains under-recognized and suffers from discrimination even in the western world. The video has made an excellent attempt at demonstrating the symptoms of autism which includes reduced social responsiveness, impaired communication skills and repetitive odd motor behaviors. It goes on explaining all these impairments in an understanding and accepting tone urging children and adults to accept autism as different way of living rather than oddness or madness. There are also visible attempts by the teacher to help Julia handle her meltdowns, echolalia and repetitive motor behavior. Indian mass media had made an equally good attempt at educating masses about autism by conceptualizing the character of Rizwan Khan, who was diagnosed with Asperger’s Syndrome only in his adulthood. The movie, ‘My name is Khan’ had showcased the social and communication difficulties which Rizwan had been handicapped with throughout his childhood. Rather than being diagnosed and treated his difficulties invited bullying and ostracism in the society. Sensitive handling of his unique needs and recognition of his strengths as well as perseverance of his mother is a vivid portrayal of an Indian parent’s struggle in seeking appropriate educational opportunities for their children with special needs. Children with autism are called ‘pagal’ (mad) in India and the disorder is often unrecognized by parents as well as medical practitioners (Divan et al., 2012). This under-recognition of the disorder is evident in terms of delay in help seeking resulting in a much later age of diagnosis (K et al., 2017). Services for autism in India are limited to be special schools and rehabilitation centers run by various Non Governmental Organizations (NGOs) under the National Trust Act (Barua et al., 2017). While the act in itself provides all provisions for training, care and support for children with autism and their families, the ground reality of the situation is not so rosy. Parents continue to suffer due to virtual absence of any provision for teaching and training and are often forced to create parent run organizations with limited scope and reach. The prevalence studies from different regions of India show a relatively lower rate of (0.15% in northwest, 0.23% in east and south) as compared to the global average of 0.5–1% (Raina et al., 2017; Rudra et al., 2017; Poovathinal et al., 2016). Methodological limitations of these regional studies justify the need to carry out scientifically robust national prevalence studies to estimate the exact burden of this common neurodevelopmental disorder in India. As per the Revised Persons with Disabilities Bill 2017, Government of India has recognized autism as a cause of disability (Notification-Rights of Persons with Disabilities Act, 2017). This recognition is a long overdue step towards providing appropriate legal and social support. Yet true benefits of the act would warrant improving functionality and reducing impairment which is only possible if the disorder is diagnosed early and provided with early intervention. Mass media can be a useful tool for educating about autism as well as dispelling the surrounding myths. Improving the help seeking behavior of parents of children with autism can definitely reduce the time lag in diagnosis and intervention. References Barua, M., Kaushik, J.S., Gulati, S., 2017. Legal Provisions, Educational Services and Health Care Across the Lifespan for Autism Spectrum Disorders in India. Indian J. Pediatr. 84 (1), 76–82. http://dx.doi.org/10.1007/s12098-016-2261-5. Divan, G., Vajaratkar, V., Desai, M.U., Strik-Lievers, L., Patel, V., 2012. Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Res. Off. J. Int. Soc. Autism Res. 5 (3), 190–200. http://dx.doi.org/10.1002/aur.1225. K, D.P., Srinath, D.S., Seshadri, D.S.P., Girimaji, D.S.C., Kommu, D.J.V.S., 2017. Lost time-Need for more awareness in early intervention of autism spectrum disorder. Asian J. Psychiatry 25, 13–15. http://dx.doi.org/10.1016/j.ajp.2016.07.021. Notification-Rights of Persons with Disabilities Act, 2017. Department of Disability Affairs. (n.d.). Retrieved June 29, 2017. (accessed on 29th june 2017). http://disabilityaffairs.gov.in/ content/viewpage/notification-rights-of-persons-with-disabilities-act?2017.php. Pasha, S.B., Qadir, T.F., Fatima, H., Hussain, S.A., 2017. Sesame Street’s recognition of autism. Lancet Psychiatry 4 (7), 520–521. http://dx.doi.org/10.1016/S2215-0366(17)30239-0. Poovathinal, S.A., Anitha, A., Thomas, R., Kaniamattam, M., Melempatt, N., Anilkumar, A., Meena, M., 2016. Prevalence of autism spectrum disorders in a semiurban community in south India. Ann. Epidemiol. 26 (9), 663–665. http://dx.doi.org/10.1016/j.annepidem.2016.07.003. (e8). Raina, S.K., Chander, V., Bhardwaj, A.K., Kumar, D., Sharma, S., Kashyap, V., ... Bhardwaj, A., 2017. Prevalence of autism spectrum disorder among rural, urban, and tribal children (1–10 years of age). J. Neurosci. Rural Pract. 8 (3), 368. http://dx.doi.org/10.4103/jnrp.jnrp_329_16. Rudra, A., Belmonte, M.K., Soni, P.K., Banerjee, S., Mukerji, S., Chakrabarti, B., 2017. Prevalence of autism spectrum disorder and autistic symptoms in a school-based cohort of children in Kolkata, India. Autism Res. Off. J. Int. Soc. Autism Res. http://dx.doi.org/10.1002/aur.1812.
Suravi Patra Department of Psychiatry, AIIMS Bhubaneswar, India E-mail address: [email protected]
http://dx.doi.org/10.1016/j.ajp.2017.07.008 Received 30 June 2017 1876-2018/ © 2017 Elsevier B.V. All rights reserved.