Many people have asked us: What is autism in India ‘like’? Does it look the same as autism in other places? What kinds of services are available? What do families do? Is the prevalence the same?
These are all very intriguing and important questions. We can answer some of these from our experience of working with hundreds of families - for instance, 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 2014 placed the prevalence of autism in the U.S. at approximately 1 in 68 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. read more about Research on Autism in India
While the disorder is not rare, a multitude of 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.
Obtaining an accurate diagnosis is one of the major difficulties faced by parents of children with autism in India. 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. read more about Family Stories
Fortunately, the process of obtaining a diagnosis of autism in India is improving in the major cities, as more paediatricians become aware of the condition. Some doctors may feel that nothing can be gained by a diagnosis of autism if the services are not available; 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 services, and ensure that the special needs of autistic children are not ignored.
There is also an urgent need to begin planning residences and centres for these children for when they become adults: people with autism have a normal life span and many will require considerable support 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. Additionally, the rigidity and pressure of schools in India can make it difficult for an autistic child to cope without special allowances.
Some children with higher support needs, who form the majority of autistic children, may attend special schools, but these schools often 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 firmly believe that special schools need to invest in learning these techniques so that they can provide the necessary help to both the children and the families.
Autism is still not recognized as a separate form of disability in the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, the primary piece of legislation that provides for the rights of and benefits for persons with disabilities in India. However, advocacy movements, spearheaded primarily by AFA, succeeded in the inclusion of autism in the National Trust Bill – ‘National Trust for Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act 1999’. Persons with autism can receive certain benefits under this act, the first ever legislation to be passed in India that recognized autism as a distinct condition of its own.
However, to get access to a majority of benefits, a disability certificate is required, and currently there is no disability certificate being issued just for autism. Those who want to avail of any schemes do opt to take the disability certificate for Autism with MR (Mental Retardation). read more about Legislation and Policy
Autism in India also needs to be viewed in the context of attitudes toward disability more generally. Traditionally there has been stigma attached to disability— shame, embarrassment, concerns about inadequate parenting— perceptions that are shared by many countries worldwide. Autism comes with unusual behaviours, fuelling beliefs about what affected the children. Historically, stigma ensured that families hid their strange children. Since autistic children were not seen, they did not exist, which acted as a barrier to awareness. It isolated families, creating a cycle of ignorance and superstition. In recent years the stigma has lessened and there is greater acceptance. read more about the Role of the Media in spreading awareness
The autism movement in India has come a long way in the past two decades; identification and diagnoses are made at earlier ages, there are more services that cater to the needs of individuals with autism, there are also some changes in the awareness levels in the general population. But there is still a lot of work to be done. If people with autism are to have an opportunity to reach their maximum potential and have dignified futures, the community of parents, siblings, other relatives, and professionals will have to continue to work together as a team and advocate for the rights of this often marginalized and vulnerable sector. read more about the History of Autism in India