UBC’s Pat Mirenda is uncovering gaps in care, including long delays between when parents see signs and when children get diagnosed
With April 2 being World Autism Awareness Day–UBC researcher and education expert Pat Mirenda discusses the challenges faced by parents and children dealing with this developmental disability.
You say autism is a public health emergency. Why?
One in 68 kids has autism, according to new numbers from the U.S. Centers for Disease Control and Prevention. South of the border, there’s a huge commitment at the federal level for autism research and intervention. In Canada, there is no national autism strategy and supports for parents and children with autism vary province by province. Services that are available to kids in British Columbia are very different than those that are available to kids in Ontario, for example.
How do parents typically find out their child has autism?
Signs begin to surface by 12 to 18 months, as families get worried that their child’s speech or social interaction skills are not developing as they should. Children with autism can often become fascinated with unusual things, like lining up objects or stacking cans. In many cases, parents go to the doctor for help, but they’re turned away, wrongly seen as overprotective. If a parent’s concern is believed, they are referred to a diagnostic centre where they may be waitlisted for diagnosis. In some cases, it can take months or even years for a child to be diagnosed, which can be detrimental because early intervention leads to better outcomes.
What are some of the latest developments in autism research?
I have been part of a national team tracking the development of 400 children with autism and their families across five provinces since 2004, starting at the time of diagnosis. We are looking for indicators that show why some of these kids do really well and why others make progress more slowly. The research isn’t complete, but some of what we do know is that most parents spot autistic behaviour in their children around 18 months but are often not given a diagnosis until the child is three or four, and parents remain stressed about the disorder even if their child improves.
Pat Mirenda is a Professor in the Department of Educational and Counselling Psychology and Special Education and Director of the Centre for Interdisciplinary Research and Collaboration in Autism (CIRCA) at UBC.