British Columbia

'Autism is not death': Protesters fight for acceptance, self-representation at annual fundraiser

A small group of autistic protesters attended a fundraising walk in Richmond, B.C., on Sunday to voice their concerns about how they are represented by organizations meant to support them and their families. 

Walk organizer Autism Speaks Canada says it welcomes dialogue and feedback

Breanna Himmelight, a member of Autistics United Vancouver, handed out flyers opposing a walk organized by Autism Speaks Canada on Sunday. (Doug Kerr/CBC)

A small group of protesters with autism attended a fundraising walk in Richmond, B.C., on Sunday to voice their concerns about how they are represented by organizations meant to support them and their families. 

The walk was organized by Autism Speaks Canada, a non-profit group that provides resources and funds autism research. About 300 people came out in support of the organization. 

Vivian Ly was not one of them. Instead, Ly stood on the sidelines of the event with about six other people and handed out pamphlets with information about her self-advocacy group, Autistics United Vancouver. 

"Autism is not death," Ly said. "We don't want to be seen as broken. We don't want to be seen as tragedies."

The walk organizer said it welcomes dialogue and feedback from the group.

'Nothing to be ashamed of'

Ly and other members of her group say organizations like Autism Speaks Canada work on behalf of autistic people without adequate representation, and portray people with autism as helpless and unable to think for themselves.

Autistics United also argues that people with autism should be accepted as they are instead of coached to behave like people without autism through practices such as applied behaviour analysis — a common type of therapy that trains people to avoid behaviours like not making eye contact. 

Members of Autistics United compare that type of coaching to gay conversion therapy, a practice recognized by many as harmful to LGBTQ people. 

"More and more disabled people autistic people are claiming our identity saying it's part of ourselves, it's nothing to be ashamed of," Ly said.

Cherishing neurodiversity

Ly and her group point to people like climate activist Greta Thunberg, who has told the world that she has autism, as evidence that people with autism need not keep their condition hidden. 

Other renowned people who have revealed their autism include stand-up comedian Hannah Gadsby and scientist Temple Grandin. 

"Neurodiversity is something to be cherished," Ly said. "It's precious, it contributes so much to society." 

'Room for all of us'

But organizers of Sunday's walk say they exist to support people with autism, not take away from them.

Melanie Haydon, national director of walking community events for Autism Speaks Canada, said she welcomed feedback from the protesters, but said they had outdated information about how autism is treated and represented.

Sergio Cocchia, board chair of the Pacific Autism Families Centre, was also at the walk on Sunday. Cocchia said he respects the protesters' opinion but disagreed with how they represent Autism Speaks Canada. 

The organization has "done a wonderful job of supporting families," he said, especially for parents like him whose child has autism and is non-verbal. 

"There are many, many voices of autism," he said. "There's room for all of us. It's a spectrum." 

Cocchia said his own organization includes an advisory group of people with autism to help guide programs and services. 

About the Author

Maryse Zeidler

@MaryseZeidler

Maryse Zeidler is a reporter for CBC News in Vancouver, covering news from across British Columbia. You can reach her at maryse.zeidler@cbc.ca.

With files from Deborah Goble

Comments

To encourage thoughtful and respectful conversations, first and last names will appear with each submission to CBC/Radio-Canada's online communities (except in children and youth-oriented communities). Pseudonyms will no longer be permitted.

By submitting a comment, you accept that CBC has the right to reproduce and publish that comment in whole or in part, in any manner CBC chooses. Please note that CBC does not endorse the opinions expressed in comments. Comments on this story are moderated according to our Submission Guidelines. Comments are welcome while open. We reserve the right to close comments at any time.