BRC PALODE iedcpalode@gmail.com: Autism in India

Autism in India

Many people have written to ask us: what is autism in India "like"? Does it look the same as autism in other places? What kind of services are available? What do families do? Is the prevalence the same?

These are all very intriguing and important questions. Some of these we can answer from our experience working with hundreds of families-- for example, we have a good idea of what the experience of autism is like for Indian families. However, without empirical research, there are many questions about autism in India (and other places in the world) that remain unanswered.

Data released from the CDC in April 2012 placed the prevalence of autism in the U.S. at approximately 1 in 88 children. No data are available from India to provide an India-specific estimate of the prevalence, and it is unknown whether there are variations in this rate worldwide. Of note, however, is a study conducted in South Korea that found a prevalence rate of 1 in 38. While the disorder is not rare, most people with autism in India have not been diagnosed and -- more critically -- do not receive the services they need. This problem occurs in many countries, but is especially true in India where there is a tremendous lack of awareness and misunderstanding about autism among the medical professionals, who may either misdiagnose or under diagnose the condition.
One of the major difficulties faced by parents of children with autism in India is obtaining an accurate diagnosis. A parent may take their child to a paediatrician only to be reassured that their child is just "slow." Unsatisfied, they may visit a psychologist, to be told their child is "mentally subnormal." Convinced that their child does not fit the typical picture of mental retardation, they may visit a psychiatrist, to be told that their child has attention deficit disorder, and must be put on medication to control hyperactivity. After months of sedation and unsatisfactory progress, they may again begin a cycle of searching for the correct name for their child’s problem. Fortunately, the process of obtaining a diagnosis of autism in India is improving in the major cities, as more pediatricians become aware of the condition. Still, some doctors may feel that nothing can be gained by a diagnosis of autism if the services are not there; yet, as more children are diagnosed as autistic and more awareness of the disorder spreads, there will be a demand for services. Schools will be forced to educate themselves if they find that more of the population they serve is autistic.

Admittedly, there are not enough services to meet the needs of mentally retarded children and adults in India, let alone those who are autistic. Let this then be an impetus to create more, and ensure that the special needs of autistic children are not ignored. There is also an urgent need to begin planning homes and centres for these children when they become adults: people with autism have a normal life span and many will require supervision after their parents’ death. Currently, the needs of autistic children in India are not being met in either the regular or special education systems. With an understanding teacher or possibly an aide, a more able autistic child can function very well in a regular school, and learn valuable social skills from his peers. However, even children with very high I.Q.’s are often not permitted in regular classes. Also, the rigidity and pressure of schools in India can make it difficult for an autistic child to cope without special allowences. Some middle and lower functioning children, who form the majority of autistic children, may attend special schools, but these schools almost always lack an understanding of effective methods of handling the challenging behaviours of autistic children. As one psychologist noted, "The kids just get ‘dumped’ or ignored at the special schools." Children with autism are frequently refused admission in these special schools because officials protest they are not equipped to handle autistic children, who are sometimes more challenging than children with mental retardation alone. We believe that special schools should invest in learning these techniques, rather than turning parents away!

Primarily as a result of intense work by AFA with the Ministry of Health in the mid-1990's, the Government of India now recognizes autism as a disability. This development is relatively recent: formerly, schools catering solely to autistic persons were not able to receive funding from the government. Persons with autism were also not eligible for concessions and benefits offered by the government unless they were diagnosed as mentally retarded, yet many persons with autism are not mentally retarded. Through the commitment of a community of parents, siblings, other relatives, and autistic people themselves, people with autism and their families now have a voice in the disability legislation and movement in India. While we are pleased that autism now receives recognition, there are still many issues to be negotiated, legal and otherwise. Parents should continue to educate themselves about the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, to be aware of what are their rights and benefits are as caregivers of autistic children.