Families of children with autism often face mounting bills for services, long wait-lists and underfunded programs — but many South Asian families grappling with autism are also faced with a life of isolation.
Gowri Kobikrishna, whose 17-year-old son has autism, told Metro Morning host Matt Galloway the diagnosis was a shock.
“We didn’t know anything about autism at that time, the first thing we did was we were in denial,” she said.
“We didn’t want to accept that he has autism … because it is going to be a big burden for us, for one thing … and they said that that is a life-long disorder, you cannot be cured with medicine, so all these things went into our mind and we didn’t want to accept that he has autism.”
Kobikrishna said she balked at the idea of telling those in her community about her son’s autism.
“In our community, they are not going to accept him as one of their family, so that’s why we were scared to go out and tell that we have a son with autism,” she said.
“They didn’t want to accept us in their relationship and they want to keep us in a different place … they said that mainly it was his mother’s fault, that we did something wrong, that we did something wrong in a past life … it’s a karma for us, so we didn’t want to go and tell the community that we have a son with autism. It is really sad, but that is the truth.”
Kobikrishna story is “very common,” according to Jonathan Bertram, a board member of the South Asian Autism Awareness Centre (SAAAC).
'We see there are other families that have the same problems. Before that, we are isolated. We thought we were the only one that had a son like that.' —Gowri Kobikrishna, mother of autistic teenager
Bertram said SAAAC aims to help break down the stigma around autism.
“It’s part of the reason why, five years ago, we started this — it was off of the stories that a lot of families had for us through just some general fundraising that we’d done, starting to find out that autism in the South Asian community was a lot more about the sort of stigma that [Kobikrishna] talks about.”
The stigma, he said, stems from a lack of understanding about what autism means.
“So much of South Asian culture revolves around education and the child moving up and the child doing well, and when it doesn’t fit that picture or that paradigm, even for people for whom the child isn’t in their family, I think it challenges their ideas of what’s normal or what’s possible, and that’s probably what we were seeing,” Bertram said.
“A big part of why we reached out to a lot of families is that people weren’t accessing a lot of the institutional services that were out there. So much has come along in the last 10 years around autism services, but so many of our families just weren’t engaging schools or engaging early years programs and as a result, it was actually worsening development for their kids.”
'A long way to go'
For Kobikrishna and her son, SAAAC is a life-changing resource.
“It’s really helpful and we get together and we share our experience, we have some place to go and talk of our experience and it’s really helpful … before that, we didn’t find a program that he could fit in. And even us parents, we have a place to go and socialize and we are laughing, which we never did before,” she said.
“We see there are other families that have the same problems. Before that, we are isolated. We thought we were the only one that had a son like that.”
SAAAC offers language-specific programs, educates clients through familiar games and offers what Bertram calls “culturally sensitive” meet-ups, which often revolve around coffee or food.
“When it comes to encounters and it comes to people who visit our centre and certainly at our community events, I think the dialogue is a lot more open,” he said.
“We’ve still got a long way to go though.”