Don’t chase causes, fight autism stigma: What two parents want us to know

Back in the 1950s, a psychologist proposed that ‘refrigerator mothers’ (moms who are cold or neglectful) cause their child’s autism. That theory was later discredited, yet the impulse to assign blame persists. From Zoho founder Sridhar Vembu’s claims that childhood vaccines cause autism to Donald Trump’s Tylenol (paracetamol) warning to pregnant moms, fresh misinformation keeps surfacing. Experts have pointed out that neither theory was backed by science, but parents of neurodivergent kids told Sunday Times that these debates distract from what really matters — empathy and inclusion

‘Everyone’s on Android. These kids are on iOS. It isn’t better or worse, just different’

Ashiish PatilWriter-producer, autistic dad to an autistic boy

I live closely with the world of autism. I have a 20-year-old, hilarious, brilliant teenager who’s on the spectrum and was diagnosed at about age two and a half. I’m a late-diagnosis autistic myself, and found out at the age of 50. In most cases, it’s like father like son but in our case, it was like son like father. In this world, misinformation is far more dangerous than no information or half information. I remember when I found out about my own son, my reference point on autism was the movie ‘Rain Man’. So, I was like, ‘Mera toh lottery lag gaya’ (I have hit the jackpot). Then someone said, “What’s wrong with you?” My wife and I then went down the autism rabbit hole, but there was so little information available. I later wrote a children’s book about autism because the existing material on it was either academic or sob stories. You just have to understand it’s a different operating system. Everyone’s on Android. These are kids who are on iOS. It isn’t better or worse, just different. Look at the kind of folks who are on the spectrum: Bill Gates, Elon Musk, and Albert Einstein. By the time I found out about my own diagnosis, I had learnt how to be a lot kinder to myself.




I may joke about it now, but man, it’s not easy being in an autistic family. The last thing you need is people spreading misinformation without fact-checking. The anti-vax discourse has been doing the rounds for a while now, especially about autism. And that narrative is ridiculous because there’s no scientific basis for it. And the danger is that if, due to fear, you stop vaccinating a child, you’re opening the child up for bigger risks like polio or measles. That’s just stupid fear-mongering. I think people with influential voices must use them responsibly. All it takes is one Google search or one phone call with a parent of an autistic child. Any half-baked opinion spreads fear and shame, and this community is dealing with enough of that. What we need is more sensitivity and awareness. And, for the record, I’ve got every vaccine, while my son has taken just a few. He’s only been on homeopathy ever since he was a child.

It’s a long process to combat these narratives. It’s similar to the taboos about HIV/AIDS that existed a few decades ago. It takes serious grassroots-level work and access to digestible information. We’ll have to start at school and instil a sense of sensitivity in our education systems. As I have spent so much time in the world of films, I also think mainstream cinema can play a huge role. A film like ‘My Name is Khan’ or ‘Barfi!’ can do way more than any scientific study or any one article.

As an autism dad and an autistic adult, here’s a final thought: Vaccines don’t cause autism, but careless comments certainly cause fear, shame, and set us back years. With great power comes great responsibility (yes, Uncle Ben of Spider-Man was right). If you’ve got a megaphone and such influence, fact-check before you broadcast. Talk to doctors. Talk to autistic families. The world doesn’t need louder opinions; it needs wiser ones.

‘As a parent, I wish we could stop with the why and focus on how to make lives better’

Gopika Kapoor Co-founder of BuddyUp Network*, and mom to a 20-year-old with autism

For years now, researchers, especially in the US, have been perplexed by, and hence, focused on the cause of autism. There have been many theories around this, especially regarding vaccines. For a long time in the 1990s and early 2000s, it was believed that if a child was vaccinated with the MMR vaccine, they would regress and develop autism. This was based on a research paper published by the Royal Free Hospital in the medical journal Lancet in February 1998, by, among other collaborators, Dr Andrew Wakefield, and reported a “temporal” relationship between normal children (12) receiving the combination MMR vaccine and behavioural abnormalities. This went viral and many parents became paranoid and refused to vaccinate their children. As a result, a lot of children later went on to contract, and sometimes succumbed to measles, mumps, and rubella. Even though the study was discredited, parents continue to believe in it and several parents do not vaccinate their children, opening them up to the risk of contracting these diseases. Amidst this, we also have the controversy by the recent Trump administration, claiming that Tylenol taken by pregnant women can cause autism. While the scientific and medical community has debunked all these theories, they feed into the paranoia of parents and make them believe that they have, in fact, caused autism or that it has been caused by vaccines that they have given their children.

While hundreds of dollars are being spent on researching the cause of autism, what we really need is to find systems to improve the lives of individuals on the autism spectrum. World over, stigma against individuals with autism continues to exist. Autistic individuals do not have access to the same opportunities in education, employment, and even in social spheres as neurotypical individuals. Our educational system does not account for those who learn differently from the norm; there are no suitable evaluation systems or methods of examination. Avenues of employment are extremely limited, with a majority of individuals with autism being dismissed for vocational employment, irrespective of their abilities, skills or potential. Socially, autistic individuals face tremendous discrimination, name calling, stigmatisation, and do not have platforms in which they can meet and socialise with other individuals with disabilities. They also lack the means to find partners and build families, which they are perfectly capable of.

As the parent of an autistic (almost!) adult, I wish the focus would move from figuring out ‘why’ autism occurs to figuring out ‘how’ to improve the lives of individuals with autism. With the term ‘neurodiversity’ being introduced, we have learnt to look at autistic individuals as those who have different kinds of brains. These brains are to be celebrated, not fixed. We need to shift our focus to exploring the tremendous potential of autistic individuals, while simultaneously changing the regressive lens through which society views them.

*A friendship app for people with disabilities

Autistic individuals do not have access to the same opportunities in education, employment, and social life as their neurotypical peers

Gopika Kapoor

As told to Neha Bhayana & Shruti Sonal