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Nipa Bhuptani talks to us about the social and cultural implications of a disorder that is only now beginning to be recognized in the South Asian community. Bhuptani is a Board Certified Associate Behavioural Analyst who has worked with South Asian autistic children and their families for many years.
SAP: What are some common stereotypes about autism that are not true?
People think that everybody with autism cannot talk. Everybody with autism is going to have a really poorly life and is not going to be able to do anything. A very typical question that I’ve heard, especially in South Asian cultures is, “Will he be able to get married?” which I don’t have an answer to. A lot of people believe that people with autism show no empathy, they have no feelings, they don’t love their parents or people around them, and that’s a stereotype that is not true.
The thing about autism is that when you know one person with autism, you only know that person with autism. It’s so different from person to person that any stereotype is never going to apply to every person with autism.
SAP: What are some aspects of South Asian culture that act as obstacles to people with autism?
What I’ve seen in the culture is that we have certain very strict social rules; expectations of social behaviour are much higher and the acceptance of anything away from that is very low. So you’re working on a very strict schedule where you have to do ‘this, this, this’ to be socially acceptable, and for people with autism, social interaction is a big issue. They really are not able to do that and they have issues with that, and that’s where I see the big fall out.
Even as parents who know their child has autism, they still expect their child to be able to participate in social events appropriately, and there’s a lot of things going on at social events which a person with autism might have difficulty with. In other cultures I see that acceptance, that tolerance for behaviour that is a little bit away from the norm. But in South Asian culture it’s not there.
And then with joint families, people like in-laws or grandparents, everybody having a say in the child’s life really makes it very difficult for parents to cope. There’s a lot of social pressure from relatives and friends that makes it very hard for parents to accept their child the way he is.
SAP: And what are some of the advantages the South Asian culture brings?
A close family and friends network. Sometimes parents get a lot of support from that, and they can fall back on their relatives and friends for respite care, for support, for emotional support, financial support—all of which I have not seen in other cultures as much so.
SAP: Many South Asian parents don’t expose their autistic children to the outside world out of embarrassment, shame, or various other reasons. What impact does this have on the child?
It would differ for every person depending on how affected he is by the autism. If he is not severely affected and he can see that he is not really accepted, that would cause a lot of disturbance for him.