What it means to raise an autistic child in India

Imagine how frustrated you would be if you were not able to express your feelings. That might give you a glimpse into how an autistic child feels.

Autism, a developmental disorder that impairs the ability to communicate and interact with others, is difficult to deal with, both for the child and the parents. My son, who is now 14, was diagnosed as autistic while we were still in the US; he was about one at that time.

After his diagnosis, we decided to move back to India. A lot of people told me not to do so, but I found dealing with my son’s autism a very solitary experience living in the West.

After coming back, we naturally approached a lot of places, looking for the best possible care for him. And after spending about five years in India, we realised that interventions in the country are rudimentary, unprofessional and ineffective.

It was then that I started a programme in collaboration with Vasant Valley School, Delhi, called "The Blue Room", which focused on education and training of autistic children. My son studied there for a few years before we realised that there was need for intervention at a larger scale. That’s how the idea for Autism Centre for Excellence (ACE) came about.

An initiative of The Special Child Trust to transform autism education landscape in the country, ACE creates a data-driven programme based on the principles of Applied Behaviour Analysis (ABA) for children between three to 15 years on the autism spectrum.

The problem with mental disability in India is that it is still considered a taboo. We are living in a society that doesn’t understand mental disorders, and we have professionals who do not know what to do.

Teachers and therapists are well-intentioned but not competent enough. Parents feel they’re doing a bad job if their child doesn’t behave "normally", or if they are not able to control their child’s autistic behaviours.

A lot of public and private schools do take in children with disability, but integration works for those with a mild to moderate condition.

Autism is a spectrum disorder; and children can be mildly, moderately or severely affected. A child might have behaviours, might be non-verbal or might not be toilet-trained. Those with mild to moderate disability can manage with some support in regular classrooms. It’s a very feel-good initiative, but this leaves a whole block of children who are sitting at home, unable to find support, who are missing out on training and opportunities in the process.

In autism, early intervention is very important; while it is becoming fairly common in India, it doesn’t happen at a young-enough age. The average diagnosis happens when the child is around five, but it should happen much earlier. And because schools take in children of a certain age, by the time a child is 11 or 12, he is already so set in his ways that training becomes tough.

By sending autistic children to regular schools, parents live in denial for a couple of years, thinking that it somehow makes them "normal". What they don’t realise but is that because of this, the child is losing precious learning time.

This also results in an academic gap, which can’t be filled later. Basically, none of the things that should happen in school - learning, growing and building relationships - are happening for these children.

We have to understand that not all autistic children are geniuses, like we are made to believe. Just like mainstream children, most children with autism are average, and while for normal children there is a path to move forward in life, there is still no path for autism.

If we are to get somewhere in helping these children, we need to work towards becoming an inclusive society. This is perhaps the biggest challenge because inclusion is not real. Inclusion doesn’t mean kindness or pity, it means being able to treat a disabled child the same as a mainstream child, whether in love or in scolding. It means providing the same opportunities for both.

Visual exposure plays a big role in inclusion. For example, for us at ACE, behaviours are a normal phenomenon, but for someone who comes here for the first time, it is something strange, and also unnatural.

Most people with autism seek structure and regularity. In fact, they are good at repetitive and conducive tasks. If we start training them at the age of eight, then by 18, they’ll get there.

The aim should be to help them gain expertise in one or two things, instead of throwing them into everything at once.

Not all disabled children need to be making candles. They are good at data entry work, can be trained to use computers, become chefs, and other repetitive tasks not based on teamwork.

(As told to Adete Dahiya.)

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