A part of the whole

Akila Vaidyanathan
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Issue Today is World Autism Awareness Day and Akila Vaidyanathan writes about the need for society to encompass children with autism and enhance awareness about it

Eight million people in India fall under the autism spectrum disorder. 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, neither 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 indeed reassuring to see that the Government now recognises autism as a “public health crisis”, and the disability as growing at an “epidemic” rate. They are looking at supporting autism awareness campaigns, professional training, and defining national and regional strategies to advance public health research and policy development.

The reality

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 ranging from doctors to teachers and therapists usually means 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 extra infrastructure needed such as resource teachers, sensory friendly classrooms and visual aids. They are so competitive today that they do not have the time nor inclination to plan their resources towards inclusive education. Many schools turn away autistic children due to the social stigma attached. High-functioning autistic children and those with Aspergers 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 mental retardation or cerebral palsy, than with children with autism. These children end up being totally segregated.

For the older child with autism, obtaining appropriate vocational training, securing employment and living independently in the community 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, SAPLabs India, in collaboration with Autism Society of India, began PRAYAS, a project where persons with autism were trained for the IT sector using computers and ipads. Four trainees were successfully placed at SAPLabs Bangalore last year.

It will take the determination and grit of parents, the commitment of schools and professionals, the support of civil society and the involvement of Government agencies in order to enable persons on the autism spectrum to become successful, contributing members of our society.

Akila Vaidyanathan has been an autism activist for the past 14 years. She is a consultant for autism and related disorders, 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. He is a National Bronze medallist for cycling (special Olympics), and an avid trekker.

Signs of autism

  • Avoids eye contact and does not have joint attention

  • Does not point and often leads adult by hand

  • Indifferent or does not respond

  • Aloof and does not play with peers; does not like to be held

  • Not aware of dangers

  • Self injurious behaviour: biting, head banging, pulling hair

  • Repetitive behaviour: flapping, spinning, rocking

  • Disruptive or aggressive behaviour: giggling, running, attacking, screaming

  • Sensory processing difficulties: visual disturbances, auditory sensitivities, tactile defensiveness

  • Language problems: difficulty with meanings, literal meanings

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