By Dr Shabi Ahmed, MD
The worldwide call for autism awareness by the United tions was declared on November 1st 2007 and urged member states to take measures to celebrate April 2nd, in perpetuity, as World Autism Awareness Day (WAAD). 2017 is the ninth year of observance with the UN–mandated theme‘Toward Autonomy& Self Determition’.
United tions Convention of Rights of Persons with Disabilities (UNCRPWD, December 2006), Article 3, recognised the right of persons with disabilities to independence of persons and to individual autonomy. Moreover, CRPWD highlights the right of persons with disabilities to legal capacity on an equal basis with others and in all aspects of life. To give effect to this convention, the Government of India, Ministry of Law & Justice passed the Rights of Persons With Disabilities Act on December 2016 (RPWD Act). Autism has been included as a specified disability. It has been defined as ‘Autism Spectrum Disorder’ meaning a neurodevelopmental condition typically appearing in the first 3 years of life that significantly affects a person’s ability to communicate, understand relationships and relate to others, and is frequently associated with unusual or stereotypical rituals or behaviour.
This presentation affects their functioning in the environment and their learning styles, appearing as social misfits. Interestingly, as we all are different so is every child of autism. Hence awareness and learning must be a continuous process in the understanding of each of these children.
Although our knowledge of autism has improved over the past 30 years, we are yet to find an explation of its causation and a definitive cure for autism. Concurrently, we are having a large population of children with autism who have reached adolescence and adulthood, and studies show that 80% of them are either out of school or unemployed. This translates to a great human resource wastage and loss to the tiol exchequer.
Studies in the US have shown that the life time cost of autism averages 1.4m$ to 2.4m$ (1US$ = 65 INR)per person. Hence, our focus of magement of this group of children has to be made keeping in mind the long term goals of autonomy and employability to curtail this loss. On the flip side, the incidenceof autism is risingworldwide. Prevalence statistics from the US Centre of Disease Control (CDC) released last year reports an incidence of 1: 68 children, Korea gives a figure of 1: 88 while Rehabilitation Council of India states an approximation of 1: 250 compared to the earlier incidences of 1: 10,000 children reported in UK in 1960 to 1:100 today. This correlates to a 100–fold increase over 40 years!
Are we dealing with an evolutiory change of neurodiversity or an environmental insult, or both? Research revealsno single cause of autism butmulti–factorial, giving rise to sub–sections of autism. This adds to the great variability of symptomatology and magement requiring a highly intensive workforce where the student to teacher ratio is 1: 1. This is a daunting task for society and till there is a cure, the answer is to embrace the children of autism as they are.
Legislations for disability in India have been in place since 1995. The tiol Trust has addressed autism under the banner of multiple disability since 1999. However, interviews of persons with disabilities reveal that society is still ignorant of their conditions, uniqueness, their specific needs. The Govt. of India has launched awareness generation and publicity schemes for the protection of interests of PWDs in 2014–15 but penetration and translation has not taken place in the society completely. Only last year has autism been included as a separate entity in the PWD Act.
Disability is not an even phenomenon and their needs differ. Disabilities like visual impairment, hearing impairment, and locomotor impairment have compensatory mechanisms and need assistive appliances. On the contrary, autism is an all pervasive problem with or without very little compensatory mechanism; they survive if we understand them, if only we make modifications, if only we bridge the gap and help them to contribute and express their hidden talents. They are smart but you cannot prove it on paper so this uniqueness of this problem becomes a peoples’ problem and autism has to be addressed on a different platform. Herein lies our acceptance of autism per se.
We accept that Albert Einstein, Mozart, Beethoven, Temple Grandin have made tremendous changes in understanding of different fields of art and science, yet it may surprise you to know that all of them have been gifted with autistic traits !As Albert Einstensaid, ‘The person who follows the crowd will go no further than the crowd. The person who walks alone is likely to find himself in places no one has ever seen before’ and it is the children of autism walking on this lonely path. The best way to integrate them is to have them socially accepted and included and treated as ordiry human beings rather than being called special.
Families must have a proper understanding to improve their accessibility and give positive emotiol support. Society needs to make responsible adjustments in seeing the person rather than the disability. Quantification of disability by the community is shaped by their accumulated myths and fears and limitations of flexibility. We have to view these children in the context of paradigm of typical people.
This acceptance is crucial.
Hence, these children will have to be given a variety of special educatiol support in order to create a successful environment as a positive experience. Studies show that very few children with intellectual impairment reach beyond mid or high school.
This therefore calls for adaptation of curriculum, as inspite of the 3% reservation under the PWD Act., 70% remain unemployed. Making adjustments, befitting their skill development to the potentialities and work place, should be the mantra. There must be continuity of seamless service between organisations and educatiol institutions when a child is transferred.
Awareness has been the first step towards changing behaviour and society must do its part. Only then will we contribute to their growth, autonomy and independence with all basic rights.