Shubhon is a curious teenager with an average IQ. Shubhon also has autism. However, he will not get the disability certificate, which is given to people with other disabilities like intellectual impairment, mobility, vision, hearing, etc. But an incorrect IQ test came to his rescue in a way. The test put his IQ at 30, and based on that he now has the disability certificate stating he has “mental retardation” with autism.
His single, working mother did not contest the obviously incorrect IQ result, knowing that it made it possible for him to get the disability certificate. She is aware that there is little understanding of the intense challenges that they, and other children with autism and their families, face in their day-to-day lives. The mother is happy that Shubhon at least has the disability certificate, and therefore will get income-tax concessions, concessions with regard to public transport, scholarships, accommodation during examinations, etc.
Had Shubhon’s mother contested the IQ result or the inaccurate label, he would have been deprived of the disability certificate.
Romit has autism along with cerebral palsy and intellectual impairment. He has the disability certificate stating “mental retardation with autism”, a much-needed document for the family. His frail mother has to take Romit for consultations regularly. They are accompanied by his father, who loses a day’s wage on each such trip.
Autism is a disability, and a fairly common one at that. Hence people who have this condition need the disability certificate. Initially, the lack of an indigenous tool to assess autism was the reason for denying this critical document. After intense lobbying, the National Institute of Mental Health came up with the Indian Scale for Assessment of Autism (ISAA) in 2009 for issuing disability certificates. However, the ISAA took several years to be “notified” before being finalised in 2012.
Two laws — the Persons with Disabilities Act (PWD) and the National Trust Act — cover 10 disabilities. According to legislation, for giving the disability certificate, a tool that can assess the “percentage” of disability is required. The Persons with Disabilities Act carries the guidelines on issuing disability certificates. But the PWD Act does not cover autism.
The National Trust Act covers autism. But it does not have any provision on the disability certificate or any guideline on it. However, this can be addressed by a small amendment to the Rules under the National Trust Act. India has just marked 10 years of the UN-mandated World Autism Awareness Day. In this context, the central government should take a sympathetic view of the needs of people with this condition.
Merry Barua is with Action For Autism
The views expressed are personal