A UBC professor is raising the alarm about the lack of a countrywide autism strategy in Canada.
Pat Mirenda, a professor in the Department of Educational and Counselling Psychology and Special Education at UBC, says although there has been movement in the right direction, the lack of a uniform strategy that encompasses the entire country is alarming.
“Services and diagnostics remain very fragmented province to province, such that if a family literally moves from one province to another, they are in a whole new service delivery system. It is very fragmented, and it makes it very difficult for families,” says Mirenda.
A recent report from the U.S. Centers for Disease Control and Prevention shows as many as one in 68 children in multiple communities in the United States has been identified with the Autism Spectrum Disorder (ASD).
This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of one in 88 children.
“A couple of years before that, it was one in 110. And a couple of years before that, it was one in 165,” says Mirenda. “So if you keep going back in time, the prevalence gets less, which means if you keep going forward in time, the prevalence is increasing quite dramatically. From one in 88 to one in 65 in two years is pretty breathtaking.”
While the numbers are U.S. based, Mirenda says they translate to Canada and other developed countries.
She says autism is becoming a worldwide problem, and more needs to be done.
“If one in 68 kids was getting polio, people would be up in arms, there would all kinds of stuff happening. So where is the response?”
She says there are major gaps between Canada and the U.S. when it comes to the management of ASD.
“Many things in Canada are provincial, whereas many of the same things in the U.S. are federal,” says Mirenda. “Many things are tracked on the federal level, and many more things can a happen on a federal level. Whereas here, it is basically province by province.”
In British Columbia, Mirenda says wait times have been historically long.
“Younger kids tend to get diagnosed earlier than older kids because people are very aware of early intervention, which requires early diagnosis, so older kids who have not been diagnosed yet can wait a year or more sometimes to be seen for diagnosis,” she says, adding that although there are a number of well-trained diagnosticians in the province, there is a real need for more.
Mirenda says she would like to see stable funding across the country and a network of treatment options that are transferable from province to province.
“There is a move toward a national surveillance system that would give us Canadian numbers and allow tracking of prevalence. That would be useful to plan ahead,” she says.
In a statement to Global News, Health Canada says they acknowledge that better information is needed to help Canadians address the health, social and other impacts of ASD.
“The Public Health Agency of Canada is working with its partners in the provinces and territories to develop the infrastructure necessary for a national autism spectrum disorder surveillance system. This system will help determine estimates for prevalence and incidence of ASD in Canada.”
The government says the initiative will provide important data needed to improve policies and programs for those impacted by ASD.
The first collection of data is expected in 2015 with initial findings to be made available in 2016.
The government says $33 million has also been invested in ASD research since 2006.
Mirenda says she would also like to see better ASD management in older children and adults.
“All of the attention in the last couple of decades has been on early intervention, which is very appropriate because we know that early intervention can make a huge difference. But when kids graduate from high school at 19, they often enter a total black hole of lack of services, employment, post-school residential and living support.”
Health Canada says they have committed $15 million over three years to support the Ready, Willing and Able initiative of the Canadian Association for Community Living and the Canadian ASD Alliance. This investment will support up to 1,200 new jobs for persons with developmental disabilities, including ASD.
An additional $11.4 million over four years was also announced to help create employment opportunities for individuals with ASD by expanding a network of vocational training programs in centres across Canada.