EDMONTON – A new study suggests there may not be enough resources available for parents of children who have autism spectrum disorder (ASD) and show aggressive behaviour.
Madeline Rainey’s son, who is now 21, began showing signs of aggression when he was two years old.
“He typically wouldn’t become aggressive unless there was some kind of precipitating event, but it might be something that wouldn’t bother someone else,” she recalled.
Rainey says her son was particularly sensitive to unwanted touch and would react somewhat extremely to those types of things, where other children wouldn’t. As a result, she says she felt judged by others.
“What I mostly experienced was people wanting to lay blame. People judging me as a mother and wanting to blame me as a parent for what they saw as a discipline problem… which it wasn’t.
“There were a lot of people who just weren’t equipped to even try and understand what his challenges were and where they were coming from,” Rainey said of the care she sought to try to help her son.
A recent University of Alberta study suggests Rainey is not alone.
The small pilot study was part of a larger study looking at families’ experiences with supports and services. It showed nine out of the 15 families interviewed struggled with the impacts of aggression.
“Sixty per cent of our pilot families started talking about how their children displayed aggression. And that piece into itself profoundly impacted their ability to get supports and services,” said Sandra Hodgetts, an assistant professor in the Department of Occupational Therapy at the University.
“Right now there is not adequate support for families to deal with aggression.”
Michael Stolte, a registered psychologist at the Centre for Autism Services in Edmonton says he’s actually rather surprised by the results of the study.
“We would never, ever turn somebody away from supports if they had a child with autism who was displaying some sort of aggression. In fact, that’s typically when we become involved.”
Stolte says when it comes to helping people who show aggressive behaviour, looking at contributing factors is extremely important; so too is early diagnosis.
“We strongly believe that early access to supports really can prevent a lot of this.”
However, Stolte says the health care system isn’t always the easiest for parents to navigate.
“It’s more supporting evidence that we need to look at those systems of care and help parents who are negotiating their way through the system.”
Rainey, whose son was not diagnosed with autism until he was 19, believes an earlier diagnosis would have without a doubt helped their entire family.
Both Rainey and Hodgetts hope positive changes will come as a result of this study.
“One important outcome will be hopefully to decrease stigma and judgement for families and people with autism. And then also to try and get supports and services into place both crisis and long-term,” Hodgetts said.
“I hope that there is more understanding and acceptance,” Rainey added.
And above all, Rainey just wants what’s best for her son.
“I just want him to be happy. I want him to be safe. That’s what I want for him.”
Hodgetts’ study was published in in the journal, Focus on Autism and Other Developmental Disabilities.
With files from Shane Jones, Global News.
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