When an Australian organization reached out to Autistics 4 Autistics Ontario, to get their take on their country’s proposed national autism strategy, the Canadian advocacy group had a firm but simple answer: We oppose it. 

A National Autism Strategy (NAS) to help autistics, their families, and health providers has been talked about for nearly 15 years in Canada. Hundreds of non-profits, charities, medical associations, and individuals have banded together through the Canadian Autism Spectrum Disorder Alliance (CASDA) to push the federal government for a comprehensive plan. But A4A and other autistic advocacy networks believe Canada’s proposed National Autism Strategy (NAS) is a waste of money, time, and effort that will not help autistic Canadians.

Why is that? CASDA’s membership. Anne Borden, co-founder of A4A Ontario, says CASDA includes organizations such as the Canadian subsidiary of the U.S. charity Autism Speaks – an organization that is opposed by many self-advocates for its desire to cure autism, rather than accepting autistics for who they are. 

Parents of autistic kids, she says, are well served by autistic adults who can tell them about how to help their children. The same goes for autistic adults. But “most of these things are not provided right now by existing autism organizations, which are very driven by paternalistic notions and a really deficit-based approach to autism,” she says.

That said, A4A is looking for change. They want a world where autistics are able to live independently under the same protections and accommodations given to disabled Canadians. CASDA argues its advocacy is important for autistics who face a patchwork system of support across Canada. They believe improving the lives of autistic Canadians requires thinking beyond just a disability lens (although they aren’t opposed to one): it requires a standalone plan like the NAS. 

A4A says it differs from CASDA in that it wants autistics — and, by extension, advocacy groups run by and for autistics — at the very centre of any national autism strategy discussions. CASDA is also run in part by autistics. Yet the difference between the two groups is apparent in the way they talk about who should be at the table when hammering out the NAS. CASDA wants autism non-profits, autistics themselves, and other stakeholders to be present at the table as equals. A4A, by contrast, wants discussions about improving the lives of autistics in Canada to be between governments and autistics themselves, without intermediaries.

The origin story

The National Autism Strategy came out of a 2007 Senate report, “Pay Now or Pay Later: Autism Families In Crisis”, which concluded that Canada’s approach to autism treatment was insufficient, varied widely, and put a lot of stress on the families of autistic people, social services, and the government. Most of the witnesses were autism organizations, medical organizations, or government departments. (It isn’t clear how many of the 15 individuals who gave evidence were autistic themselves). Its top recommendation was a National Autism Strategy with input from stakeholders, “including individuals with autism”, on everything from autism treatment to education and awareness campaigns.

But Borden and other advocates, including the Autistic Self Advocacy Network (ASAN), say the story begins in 2006 when former U.S. president George Bush signed the Combating Autism Act (later renamed the Autism Collaboration, Accountability, Research, Education and Support Act). That piece of legislation gave nearly $1 billion U.S. over a five-year period to screen for autism and other conditions, conduct research, and provide psychosocial treatment. Much of the focus of this bill was on curing or ending autism, rather than helping autistics live their lives. That philosophy, advocates say, is also present among many of the members of CASDA’s coalition who are currently lobbying for the National Autism Strategy in Canada — especially Autism Speaks. 

The U.S. based charity lobbied for the Combating Autism Act, and Autism Speaks Canada, its subsidiary north of the border, is a prominent member of CASDA. Autism Speaks has received a lot of criticism from autistics for its focus on curing autism and its work on MSSNG, a genome sequencing database for the families of autistics. Some in the autistic community describe MSSNG and similar projects by other non-profits, charities, or researchers as eugenics projects aimed at preventing the birth of autistic people. (On its website, Autism Speaks says it does not support eugenics). 

Borden says autism non-profits and charities also have a long history of securing government funding for ineffective projects. She cites the 2019 AIDE project: a $10 million sole-source contract for the Pacific Autism Family Network and the Miriam Foundation to produce a website of resources for autistic people and their families to counter misinformation— one that she describes as ridiculous given the prevalence of Google. “What’s happening is the same bad players, like Autism Speaks, are putting out these terrible projects that don’t do anything to help anybody except pay for their salaries,” Borden says. “They’re the ones behind the push for the National Autism Strategy, just like in the U.S.” (Autism Speaks Canada did not respond to two requests for comment by press time.)

Dr. Jonathan Lai, executive director of CASDA, says the coalition believes in transparency and accountability for whichever groups receive funding for the NAS. He says doesn’t want another WE Charity scandal, but believes organizations working on autism should receive government funding to implement the NAS. “They have to give money to somebody,” Lai tells Future of Good in an interview. “It’s going to be the ones who are actually making an impact. The government’s going to make that decision in the end. As an alliance of all these member organizations, we want transparency in terms of how it rolls out and where it rolls out.”

Lai also says that CASDA members don’t have to agree on everything about autism or support for autistics, so long as everyone in the coalition has “evidence-informed” opinions and they agree on strategies to move a NAS forward.  “If they agree on the one thing that we’re pushing through together, as an alliance, they’re free to join,” Lai says.  

Both self-advocates and CASDA believe Canada’s current system for supporting autistics is ineffective. Where they really differ is in how autistics should be considered by the federal government.

Disability versus condition

In A4A’s view, an avenue already exists for autistic Canadians: amending the Accessible Canada Act, a piece of legislation that gives the Canadian government to work with disabled people and “stakeholders” to create new accessibility regulations that apply to sectors under federal jurisdiction, like banking, telecommunications, and transportation sector. It lays out requirements for workplaces, a complaints mechanism, and enforcement.  

While the Accessible Canada Act does include people with communications difficulties (which may cover non-verbal autistics) Borden says autistics were excluded from the Act at large, and that needs to change. “Autistic people are part of the disability community,” she says. “Autism is a disability that needs to be accommodated, and autistic people need access, and we need inclusion. We don’t want to be separated into a special policy strategy, either. What we want is to be integrated into existing disability policies.”

Maddy Dever, an autistic advocate and member of CASDA’s board of directors, says the coalition already considers autism to be a disability. “I’m autistic and I’m disabled,” they explain. But they, and CASDA, believe a NAS is needed because of how wide-ranging and complex autism is. “Autism isn’t just a health issue. It isn’t just an employment issue, it’s not just an education issue, it doesn’t just involve social services,” Dever says. “It’s all of these things.”

We don’t want to be separated into a special policy strategy, either. What we want is to be integrated into existing disability policies.

Baking a disability lens into all federal government ministries is something CASDA supports – and the Liberal government has promised – but Dever says the needs of autistics are very specific and deserve a standalone plan. They also say there needs to be federal coordination around an NAS to get the provinces and territories on board. “There [are] lots of provincial organizations that are really focused on advocacy at the provincial end and not as much in the federal government,” Dever says.

Borden says, in Canada, disabled people have the right to live where they live or choose their own personal support worker. “That is not extended to intellectually disabled people or autistic people,” she says. Instead, Borden says, the vast majority of autistic youth who need help living independently end up in group homes. These facilities can be abusive and oppressive, even violent. Borden has written about the Child Parent Resource Institute, a London, Ontario based residential institution that recently had to pay out $10 million in damages after a class action lawsuit by disabled children at the facility over abuse that spanned five decades. Sixteen similar institutions in Ontario are facing similar class actions, she wrote.

“Autistic people want their own apartment with their own roommates,” Borden says. “This is something that can be done with political will.” In the U.S, a program called The Money Follows The Person provides money for states to transition people with disabilities out of institutions and into communities.

Getting autistic Canadians out of institutions and group homes and into the community, with the independence to live their lives as they see fit, is paramount to A4A and other advocacy groups. As A4A writes on their website: “Charities, MPs and parent groups do not speak for us. We do not want pity: we do deserve rights and protections.”

Representation

“Nothing about us, without us,” is the mantra of the modern disability justice movement — and rightly so. For centuries, neurodivergent, disabled, and mentally ill people have been “treated” against their will using techniques that have, at times, included torture. They’ve also included cases where panels or organizations established to help disabled people include few, if any, examples of lived experience. Of CASDA’s 13-person executive board, three of them, including Maddy Dever, identify as autistic. “A few years back, there were very, very few autistics involved in the board of any autism organizations,” Dever says. “Just getting heard was the big thing.”

After this story was published, CASDA contacted Future of Good to dispute the notion that the way it thinks about autistics and the NAS is different from A4A. They pointed to the original interview with Dever, in which Denver says, “The way I would describe it is: Every member has an equal vote and an equal voice…As an Autistic Canadian, I have just as much of a vote as Autism Speaks, Autism Ontario, all of the other organizations. I was elected to the board of directors, and on the board of directors, I sit with all of the people, three of us are Autistic. And we each have an equal voice. We have the equal opportunity to influence, the equal opportunity to comment on things, and the direction corporately moves because of all of those individual voices ending up sticking as one through the policies that get pushed out.”

Dever was originally quite skeptical of CASDA. Two years ago, CASDA put out a call for autistic self-advocates who wanted to be part of a lived experience committee to help organize a CASDA summit — and they decided to sign up because they wanted autism organizations to actually listen to autistic people. Since then, Dever’s gotten more involved in CASDA through the development of summit planning. “I was able to be directly part of influencing the policies being written,” they say.

However, Dever and other autistic directors are in the minority on CASDA’s board. Of the 13, at least three (including Dever) are the parents of children with autism, at least seven (also including Dever) are listed as non-profit professionals. The chair of the board, Debbie Irish, is the chief operating officer at the Canadian Council on Rehabilitation and Work, while her vice-chair is the vice-president of the Premier’s Council on the Status of Persons with Disabilities, an advisory board for the Alberta government. Neither identifies on their bio page as autistic.

CASDA tries to bring together a balanced perspective of stakeholders to consult on the NAS, including — but not limited to — autistics. These include medical practitioners, parents’ groups, and non-profit leaders. Their treasurer, for example, is not autistic. “Their skill set helps the organization and helps the organization to achieve its vision, which is that autistics are at the centre,” Lai said. Would CASDA consider having more autistics in leadership roles? “For sure,” Lai says. “We’re growing in that direction.”

But just having autistics on the board isn’t enough for A4A. As Borden put it in a subsequent email to Future of Good, “…it is irrelevant that CASDA found 3 autistic people who support the deeply flawed mandate of the CASDA lobby. It does not change the fact that CASDA’s mandate is flawed.” She wants the Canadian government to listen to advocacy groups like A4A, made up entirely of autistics, rather than non-profits and charities who might have a few senior autistic members but haven’t had a good history of working with autistic people themselves. “[The federal government has] to get over their really hostile attitudes towards autistic-led advocacy groups and make us part of the conversation,” Borden says.

Dever says CASDA is moving toward more autistic leadership, including through a recent “Autistic-led, Autistic-centered, Autistic-focused conference,” among other activities. “This is an autism organization that’s not led by Autistics, but has Autistics saying that Autistics need to lead this part of the process. That’s where I see the growth, the change, and it’s a progression.”

‘Nothing about us, without us’, in the eyes of A4A and other self-advocacy groups, means centering autistic people and their desires in an NAS based on what autistic people themselves are asking for — not what autism non-profits or charities say they want.

To be continued

Consultations for an “evidence-based assessment of autism” to help guide the federal government’s design of a NAS have already wrapped up. According to Serge Buy, the CEO of the Canadian Academy of Health Sciences — the organization overseeing this assessment — a final report to the federal government is due in early 2022. It’ll be up to Parliament to draft legislation around an autism strategy and pass related legislation. 

Dozens of organizations and individuals took part in consultations for NAS, including A4A. Borden says the network believes it to be a flawed process but attended to give their two cents, anyhow. CASDA also said, following publication, that it had tried to reach out to A4A. “Our organization has repeatedly, including in writing, sought to engage Borden and A4A in discussion,” the organization’s response read. “In addition to our numerous attempts to have direct conversations with A4A, our membership is open to any individual and organization, A4A is not exempt from that invitation.”

No details on the consultation process for the NAS have been released, but A4A is already skeptical of the objectivity of the process. One of the opening speakers at CASDA’s most recent conference was Serge Buy, the head of an organization that is supposed to be weighing and considering all available evidence for the NAS consultations. (In response, Buy says he was simply providing an update on the consultation process.)

Borden believes its ultimate beneficiaries will be the autism non-profits and charities who lobbied for it in the first place — and she doesn’t think they deserve to lead the way into a better for autistic Canadians.

“There is no way to reform Autism Speaks, nor its representative, CASDA,” Borden wrote. “Autism Speaks is not built for the work of inclusion. It is time for new leaders.”

This story was updated on Monday, Oct. 18 at 8:23 pm.

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