Autism organizations across the world will celebrate World Autism Awareness Day April 2 with special fundraising events. Autism is now the fastest growing and most commonly diagnosed neurological disorder in Canada.
According to Autism Speaks Canada, one in 68 children are currently diagnosed with autism spectrum disorder. In British Columbia, one in 61 children have been diagnosed with autism spectrum disorder (ASD). Statistics released in 2014 from the US-based Centre for Disease Control and Prevention show identical rates of autism across racial and ethnic groups. ASD is believed to be caused by a combination of genetic and environmental influences.
“But when you look at children and adults that actually get an autism diagnosis, white children are 30 per cent more likely to receive an autism diagnosis than black people and 50 per cent more likely than hispanic. So minority children are diagnosed less and significantly later than white children,” says Dione Costanzo, president of the Autism Support Network, a parent-run organization. She has a 14-year-old son with autism.
Autism in South Asian community
District Behavior Specialist with the Surrey School District Action Team for Autism Preetinder Narang says that one or two out of every 100 children in the South Asian community may be on the autism spectrum. She points out that for South Asian families, there are cultural variables that may create additional challenges or potential barriers to services for a child with autism.
“There are cultural beliefs about disability that are unique to South Asia, such as the belief that disability is a punishment from God for misdeeds in a previous life, or ‘karma.’ In some cases, the mother is blamed for producing a child with a disability, and the diagnosis is concealed from extended family, friends, and the community,” says Narang.
She says there may be intense shame and stigma felt by members of the South Asian community, which can contribute to a delay in both receiving the initial diagnosis of autism and engaging the services of a trained professional.
In her experience, some Asian families are unfamiliar with the defining features of autism, and therefore may miss the early signs of developmental delay.
“Autism is sometimes perceived of as a Western phenomenon, and therefore there may be less overall awareness of autism and the importance of early intervention in some Asian cultures,” says Narang.
Robin and Neetika Bains have a seven-year-old son who has autism.
Originally, when their son was diagnosed at age two-and-a-half, he didn’t make eye contact and wasn’t very good in social situations. Neetika believes early diagnosis and intervention has made all the difference.
“He’s now talking. He’s very social. He loves having company over or going out and playing with other children. He makes eye contact. He’s very loving and affectionate,” says Bains.
Robin says that many new immigrant South Asian families may not question authority, such as doctors.
“They come from a culture where they are basically told to accept it. They’re probably scared of losing access to funding. In other cultures or countries, they don’t understand that you have a right to [funding]. You have options. You have recourse and appeal and you have steps to take to get the desired outcome,” says Robin.
Advocacy for autism
Dave Chan is a first generation Chinese immigrant. His family has been in Canada since 1972. His son who has autism is now 25.
In 1997, Dave Chan and 27 other families sued the provincial government for treatment funding. The process took eight years and led them to the Supreme Court of Canada.
“In the Supreme Court of Canada, there was no question of the effectiveness of the autism treatment, but the court said was it was a political issue. It wasn’t up to the courts to tell the provinces to spend the money. So they told parents to get political,” says Costanzo.
Chan and the other families sued the NDP government for autism treatment funding. Autism, to these families, was a neurological disorder and a health concern. Therefore, Chan feels that the health ministry should be funding services for individuals with autism.
Currently in British Columbia, if a child is is diagnosed with autism, the funding model comes from Ministry of Children and Family Development, which is a social service organization and not qualified to treat a neurological disorder, says Chan.
“They’re there to help you get through the day because you’re in need of a social service. So there’s not a view [of] treatment,” he says.
As a result of the lawsuit, the BC government now provides diagnostic treatment funding for children with autism for up to $22,000 a year until they reach the age of six. At six, the funding drops to $6,000 per year until they are an adult. A comprehensive treatment program for children with autism back in 1997 would range anywhere from from $50,000 to $60,000.
He feels that the government has a responsibility to offer more support for people with autism. Chan points to the American government that has legislation providing Free Appropriate Public Education for individuals with disabilities (physical and cognitive) up to the age of 22.
“There’s no such legislation in Canada because the education system is under the provincial government. Province to province, there’s no uniformity,” says Chan.
Even as a young adult, Chan’s son still receives professional help from a behavioural consultant even though he no longer receives any funding.
“It’s about human dignity. We feel his life is better because we are able to have professionals help him move on in his life. It ain’t done,” he says.