Eight million people in India fall under the autism spectrum. They remain deprived of their rights in the absence of adequate institutional support, observed Congress president Sonia Gandhi at the inaugural address of the South Asia Autism Network Conference in February at New Delhi. She added that public polices have not kept pace with their needs and rights, nor has an understanding of autism’s causes been crystallised despite its widespread prevalence.
“It is simply not acceptable that we perceive people with autism as people who don’t have any understanding. We need to change. We must make the world a comfortable place for those with autism. We need to learn to respect those who may perceive and experience the world differently from us. We need to empathise with them. We need to focus on not what is different about them — unfamiliar movement, unexpected expressions, unusual silences, uncommon imagination — but on the vastness of what we have in the common as equal members of one humanity,” she said. It was reassuring to see that the Government recognises autism as a “public health crisis”.
The ground realities for a parent with an autistic child are, however, very different. It is a huge struggle every day, at every stage. When the parent has just become aware that the child may be in the spectrum, lack of awareness, training and collaboration among professionals — from doctors to teachers and therapists — usually mean that families are running from pillar to post for correct diagnosis and understanding of their child. The void in the area of professional help and guidance means that children do not have access to these crucial services early enough. Even if they do, the services are not delivered in a systematic manner and are often, very expensive. The need of the hour is a campaign to scale these services through existing resources such as teachers, para-professionals and technology.
Inclusion of children with autism in mainstream schools is also a challenge. Schools are not geared with the required infrastructure such as resource teachers, sensory-friendly classrooms and visual aids. They are so competitive today that they do not have the time or inclination to plan their resources towards inclusive education. Many schools turn away children with autism due to stigma. High-functioning children with autism and those with Asperger’s syndrome can do well academically.
However, behaviour problems and difficulty with social skills often force them out of mainstream schools. Most special schools are better geared to support children with the likes of cerebral palsy, than with children with autism. These children end up being segregated. For the older child with autism, obtaining appropriate vocational training, securing employment and living independently are challenges. In metros, the situation is looking up and there is a lot of awareness and availability of services besides inclusion of children in mainstream schools. There have been success stories where children with autism have passed Board exams, some have even completed professional degrees and secured placements in leading corporates.
For instance, SAP Labs India, in collaboration with Autism Society of India, began PRAYAS, a project where persons with autism were trained for the IT sector using computers. Four trainees were successfully placed at SAP Labs Bangalore last year.
It will take the determination and grit of parents, the commitment of schools and professionals, the support of a civil society and the involvement of Government agencies to enable persons on the autism spectrum to become successful, contributing members of our society.
The writer has been an autism activist for the last 14 years. She is a consultant for autism and related conditions, as well as the founder-director of Amaze Charitable Trust. She has a 17-year-old son with autism who uses alternative ways of communication