It took Shanthi Rajaratnam 12 years to accept that her children would always be different from other kids.
It started in 2000, when she got a call from the principal of a daycare in Montreal, where she lived at the time. She was told that her five-year-old daughter, Arathygah, wasn’t responding to her name. Concerned that the child was always in a corner and not socializing with her peers, teachers suggested that Rajaratnam take her to a pediatrician. Shortly afterwards, Arathygah and her three-year-old brother, Aruchunaraj, were both diagnosed with severe autism. This was five years after their mother moved to Canada from Sri Lanka, and the first time Rajaratnam heard of the condition.
“In the beginning, I didn’t know the meaning of autism,” she said. “In Hindu and Tamil culture, we believe heavily in horoscopes. Back home, everyone gave me so much hope. They said in seven years and 10 years my kids will be okay.”
In 2002, Rajaratnam heard of herbal treatments in tablet form — a mixture of herb extracts, minerals and homeopathic salts —given to children with behavioural problems in India. Eager to experience the reported successes of the new therapy, she took her children to India, where she remained for six years. She eventually realized their behaviour was getting worse instead of better.
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“My son became very violent and started attacking my daughter,” she says. “I couldn’t cope with him alone in India, so I came back to Canada thinking, ‘My son is a Canadian. They will help me.’ When we got to Toronto in September 2012, I had to admit him to a hospital within two days.”
Rajaratnam stayed with her son in the hospital for two months, coming home only to shower. On Nov. 19, 2012, he was placed in Cedar Heights residential facility in Toronto. Aruchunaraj was 14 years old. He’s been in a long-term care facility ever since.
While families in this province generally face long wait times for government-funded autism therapy, Ontario’s immigrant families battle many additional barriers. There’s a good chance Aruchunaraj’s symptoms could have been managed if had started intensive behavioural intervention — a comprehensive treatment strategy designed for children with autism under four years of age — shortly after he was diagnosed. But like many children with autism born to newer Canadians, his symptoms worsened.
“There’s no word in South Asian languages for autism,” says Geetha Moorthy, founder and executive director of South Asian Autism Awareness Centre in Scarborough. “It’s not understood by many parents. A lot of South Asian people think autism is a behaviour that hasn’t been addressed properly.”
When Moorthy founded the centre in 2008, about 12 families showed up after seeing TV and radio advertisements. All of the children seeking help were in their teens. Some parents, she said, explained that their kids hadn’t spoken a word until they were seven or eight years old. Many had never received any remedial care or therapy.
“The men said things like, ‘My wife didn’t take care of the child properly, that’s why this happened,’ she says. “It was heartbreaking, because when we started growing and we had 18- and 19-year-olds coming to us, and it was the first time they were getting any treatment. The parents just waited without even knowing the child had autism.”
Access barriers to autism treatments for newcomer communities are also the case in the U.S., says Jigna Desai, a professor at the University of Minnesota’s department of gender, women and sexuality studies. Though by law, agencies which receive state or federal funds — including non-profits — must provide a free interpreter to people with limited English; this doesn’t guarantee the translator can convey the information in a way that addresses its complexities. In her research at the University of Minnesota, Desai found some Somali families in the U.S. maintained autism is not a “Somali” illness, and that there isn’t a word for the condition in the language.
“They were convinced this was something caused by migration,” she says, “So the narrative that was available to most of them was that it was a vaccine [that was causing autism]. Some of them got caught up in that and became anti-vaxxers.”
For many immigrant communities, shame is also an issue that paralyzes the therapeutic process. Parents fear embarrassment and for their family’s reputation. According to Rajaratnam, many parents don’t even want people to know that they’re coming to autism awareness centre for help.
Visible minorities face a unique kind of stress, according to Desai, which may prevent timely treatment for developmental challenges.
“There’s pressure to be a model minority, or economically and socially successful when you’re an immigrant,” she explains. “The stakes are much higher.”
The investments and risks taken by first-generation immigrants play out partly in reproductive politics. Part of the mainstream narrative of immigration, Desai explains, is that your children will have a better life than you. In some sense, when children don’t live up to that pre-constructed ideal, it makes the family feel like a failure.
“It brings into question the whole idea of immigration as an upward mobility mechanism,” she says.
When diagnosing autism in children from immigrant families it’s important that the tests are culturally sensitive. Desai says that in India it wasn’t unusual for her to put food in her child’s mouth. But if one of the markers for a neurological disorder is whether or not a child can feed himself, in this case it would not be an effective diagnostic tool.
“One marker could be whether or not the child makes eye contact,” Desai says. “But if you have a family from a culture where maybe there’s different understanding about how authority should be respected, then making eye contact isn’t the right mechanism for assessing autism.”
But one of the biggest hurdles in assessing autism in visible minorities and immigrant communities is that people just don’t think of it as a non-white issue.
“In the U.S., there is an under-diagnosis of visible minorities,” explains Desai. “Sometimes black and Latino boys will even be diagnosed with oppositional defiant disorder (a persistent pattern of anger, irritability, arguing, defiance or vindictiveness toward other authority figures), prior to being diagnosed with autism because it’s so racialized. It really works against recognizing autism in people that aren’t white.”
The most recent report from the U.S. Centers for Disease Control and Prevention says that white children were more likely to be identified with autism spectrum disorder than black or Hispanic children. About 1 in 63 white children were diagnosed, but only 1 in 81 black children and 1 in 93 Hispanic children.
As for Rajaratnam, she looks after her 20-year-old daughter full-time at home. Her 18-year-old-son lives at a care facility in Stouffville.
“Aruchunaraj comes home on Saturdays for two hours,” she says. " It’s hard because he’s been scaring Arathygah. He’ll pinch and scratch and bite. She’s too scared to go anywhere now.”
Photo courtesy South Asian Autism Awareness Centre.