Guest post: Understanding the Difference Between “Autism Organizations” and “Autistic Organizations”

by Alex Kronstein

Okay. I can’t be silent about this anymore.

The Senate of Canada is having a major Autism Awareness Day today, October 25, on Parliament Hill.

I’ve spoken about some autism issues in Canada before, but I haven’t said anything about one particularly big one that went down this year.

Until now.

This article was published on September 28. I only just noticed it the other day.

At the beginning of the article, it says: “Canadian families coping with the challenges of caring for autistic children would really like to see federal politicians get their act together. It would also help if all factions within the autism community started working toward a common cause.”

Okay, first of all, there are actually TWO communities at play here: the autism community, and the AUTISTIC community. There is a big difference between the two. Michelle Swan describes the difference very well right here, so I won’t repeat it. Keep reading….I’ll have more on this in a minute.

Further down, we find this: “Coincidence or not, another group – Autism Canada – withdrew support from CASDA and the partnership, claiming it lacked financial transparency and measurable deliverables. Instead, Autism Canada is now working with the Liberal Party’s national policy committee on a report to federal ministers to create a national autism program – doubtless with a distinctly Liberal stamp.”

Now I’m no fan of Autism Canada, but they do raise a valid point about the lack of financial transparency among the Canadian Autism Partnership Project. Indeed, CAPP’s financial statements haven’t been made public. And seeing how the intent of the project was to deliver a report to the federal government, it only makes sense to make the financial statements publicly available.

And “distinctly Liberal stamp”? What the hell does that even mean?

As for why I don’t like Autism Canada: they are deeply entrenched in the pathology paradigm, and under the “Treatments / Interventions / Therapies” section of their website, they list a whole bunch of quack “treatments” for autism, including homeopathy, the Son-Rise program, nutraceuticals, various diets, and other questionable ideas.

Oh, and under the section on Diets, there’s some info on Bernie Rimland, including this little gem: “Dr. Rimland, founder of the Autism Research Institute and pioneer of biomedical autism treatments, lost his battle to caner on November 21, 2006. His crusade for autism was relentless. He will be dearly missed, but his legacy to understand and implement biomedical treatments for autism will live on forever.”

I don’t think many Autistic adults miss Rimland. He was one of the worst curebies around.

Then I read this: “Autism Canada does not endorse treatments, interventions and therapies but lists them so people can make an informed choice.” …They don’t endorse homeopathy, the Son-Rise method, questionable diets, etc? Considering the uncritical postings I read on their site, not to mention their praise of Bernie Rimland, I would very much disagree (Search Autism Canada’s website for yourself if you’re so inclined. I’m not linking to it here.)

Getting back to the iPolitics piece. Further down, I read this: “Cynthia Carroll, CASDA’s executive director…..says Autism Canada’s decision to withdraw deflects from the common goals of all parties.

“Who lost out was the families,” she says.

“We really need to be saying to the government, Work with all national agencies on the same agenda, to make it happen for individuals and families,” she says.

Okay, here’s the thing. The idea that autism groups have a “common goal” is bullshit. Because it’s not true.

I can point to two fairly new organizations that have a very different goal than most of the organizations CAPP consulted with. Now these were founded after CAPP wrapped up, but rest assured their goals are extremely different from the Canadian Autism Spectrum Disorders Alliance, Autism Canada, and especially Autism Speaks Canada.

They are…..

Canadian Autistics United

and A4A Ontario

Canadian Autistics United began when the Vancouver and Winnipeg chapters of the Autistic Self-Advocacy Network were rebranded. It is an independent Canadian-run organization run by and for Autistic people, something that has been desperately lacking in Canada for far too long. I believe they will eventually get more chapters, and I have expressed an interest in starting a chapter in Halifax. Keep an eye on this group.

A4A, Autistics for Autistics, is the first Autistic self-advocacy group in Ontario. They support reform to Ontario’s approach to autism funding and services. I am a strong supporter of this group. You can check them out at www.a4aontario.com.

Another smaller group is London Autistics Standing Together (LAST) in London, Ontario. Learn more about them at www.londonautistics.wordpress.com.

Getting back to why autism groups don’t have a common goal…..here’s a perfect example. Autism Canada and Autism Speaks Canada both support ABA. CAU, A4A and LAST do not.

Need more specifics?

One of the key goals of CAPP was to “enhance practice related to early identification of ASD”.

It also states “further activity to address this complex issue and creating standardized ASD screening and identification guidelines will allow for improved access to intervention and support at the earliest possible time in a child’s developmental track, opening up the potential for earlier intervention and positive impact on the developmental trajectory for children identified with ASD.”

So what is this supposed to mean? More funding for ABA?

The CAPP Business Plan doesn’t say exactly what that’s supposed to mean.

I highly recommend checking out Appendix E of the business plan, entitled “Sample Descriptions of How Two Priority Complex Issues will be Addressed”. It describes how they’ll address the issues “Enhancing Practice Related to Early Identification of ASD” and “Enhancing Employment Opportunities in Autism Spectrum Disorder””

These two priority issue descriptions are chock-full of corporate double-speak and gibberish that it’s nearly impossible to comprehend what they’re trying to say.

Another thing: Autism Speaks Canada is a supporter of that wretched MSSNG program, which all of us Autistics despise. For those of you who may not know, MSSNG is a collaborative genome sequencing project between Autism Speaks and Google, with the purpose of finding a genetic cause for autism. As The Caffeinated Autistic says:

“There is a huge problem with not only the research being done (seizures are still not autism, no matter how hard you try to make them so), but the ethics of making 10,000 autistic people’s genomes available to researchers without much thought to the consent of the autistic people in question.”

And of course, Autism Speaks Canada has exactly zero Autistic people on its board of directors or in leadership positions. (What else is new?)

Oh yes…and unlike their American counterpart, they still have the word cure in their mission statement!! (That’s not a defence of the main organization, by the way.)

Want proof? Taken straight from their website: “At Autism Speaks Canada, our mission is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bring hope to all who deal with the hardships of this disorder.

“Autism Speaks Canada aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.”

Jesus Christ on a stick, Autism Speaks Canada is just as much a pile of dog leftovers as the American mothership! (Thought that might be unfair to dogs.)

Back to the original article, then we get this.

“Mike Lake, whose autistic son Jaden is now 21, considered his motion a no-brainer, though he agrees that ‘it’s next to impossible to get unanimity in the autism community.'”

You’re right, Mike. It IS impossible to get unanimity in the autism community.

Because, as I already said, there’s the AUTISM community and the AUTISTIC community.

And “unanimity”? Well, as Nick Walker once said in response to Autism Speaks’ 2015 Call for Unity: “What the vulture calls unity, the giraffe calls getting eaten.”

Bang. On.

The same thing can be applied to any situation where the neurotypical majority is asking for “unity” in relation to autism issues.

Lake also says that what drives all families “is getting their kids much-needed help through school and into meaningful employment and supportive housing.”

Oh Mike. If you only knew.

That’s NOT what drives all families.

More on this in a moment.

There’s a fair argument in the article for more housing options for Autistic adults. This is commendable; Autistic adults deserve to live independently, with any supports they need. No one can argue with this.

As it says, “many Canadians with autism or other disabilities can’t find a place to live. More than a million have trouble finding affordable accommodation, the Committee on the Rights of Persons with Disabilities reports. A guarantee of accessible housing for them, it said, has to be included under the federal government’s National Housing Strategy.”

Again, this is perhaps one of the strongest parts of the CAPP plan.

But then there are several comments from parents of Autistic adults crying about what will happen to their Autistic children when they (the parents) are gone.

Well folks, now the gloves are coming off.

It is true. For many Autistic people, no one will be there for them when their parents are gone.

But that’s the result of their parents’ actions.

Here’s an extremely powerful piece from Kassiane Asasumasu on this topic. If it makes you feel uncomfortable, then you should take a look at yourself and think about that.

I should point out that it’s specifically directed at parents who aren’t supporting their children. Nonetheless, it’s extremely important, because it does raise an important point: when people talk about “services for families”, what they really mean is services for parents. And that’s a major part of why Autistic adults don’t get much support, because the system is so heavily parent-centered.

Whew. That’s a lot.

So as you can see, there will never be “unanimity in the autism community” as long as the neurotypical majority continues to speak for us and over us.

But that’s changing.

With A4A Ontario, Canadian Autistics United and hopefully other groups sprouting up, the day will come when Actually Autistic people will be taking the lead on all issues that affect our lives.

Alex Kronstein is an Autistic activist and filmmaker from Dartmouth, Nova Scotia. He is the host of the podcast The Neurodivecast.