A4A co-founder Anne Borden King recently spoke with TVO’s Big If True science program about the problem of autism pseudoscience. Also interviewed: Autism pseudoscience expert Melissa Eaton!
Also, check out the related article, a further deep-dive into autism scams by investigative journalist Bethany Lindsay.
King’s new book, which covers autism pseudoscience and parenting, is available for pre-order from Indigo Books.
By Anne Borden King
In a blast of irony, RFK’s claim that Tylenol causes autism has given a lot of autistic people a headache. Because we know this is only the beginning of another avalanche of autism pseudoscience.
In his statement, the US President enigmatically said, “I think we found an answer to autism. We won’t let it happen anymore.” But as CBC reporter Natalie Stechyson notes, “Medical experts have pushed back, saying there’s no causal evidence linking fetal development and acetaminophen.”
Unfortunately, science will not deter the scammers. I can already imagine the boldface ads on Facebook: “If your child was autismed by Tylenol, enrol in our detox program TODAY!”
In fact, this week Dr. Mehmet Oz is doing a media circuit, promoting a branded vitamin supplement that he claims may treat autism–a supplement that was recently been approved by the FDA. Go figure, eh.
The vitamin itself has been touted on Facebook by countless companies, with no clinical evidence of benefit. This is something Dr. Oz himself seemed to acknowledge in an interview with the TMZ guys, who patiently explained correlation/causation to the audience (as this week’s announcement seems to have completely abandoned the concept).
Meanwhile, our members in parent Facebook groups are already seeing underground sellers claiming their bogus products (like fake supplements & bleach products) can detox kids from Tylen-autism.
It’s all part of the big scheme to fleece parents of their cash while contributing nothing to improving quality of life for autistic people and our families. The pseudoscience industry makes its billions by exploiting the concept of a toxic world—the idea that danger lurks in everything we ingest, breathe or experience.
I know this because I ran a campaign to expose autism scammers. I did a deep dive on social media, wrote features and reported scammers, eventually writing a book about it all. What I learned is that the grifters’ key marketing tool is social media algorithms that force messages of fear and outrage at people 24 hours a day.
In fact, online grifters have warped many people’s perception about risk to the point where some are physically endangering their children while “detoxing” them with stem cells infusions, chelation and even bleach, spending tens of thousands of dollars on bogus products.
The emotional costs are also massive. Suicide rates are much higher in our population compared to others. Just imagine your parents are telling you (and all their friends!) that you were a toxic accident. This happens to autistic people whose parents have gone down the social media rabbit hole of “severe autism” communities that promote useless vitamins and tinctures, all which detract from real therapies and inclusion initiatives.
Families cannot connect if one child is always viewed as a broken version of normal.
The old joke in our community is: Sex causes autism. It’s funny because it’s true! We don’t know (and can’t control) most of what we experience. But we can control how we react to the unexpected. Amazing things happen when you say no to the fear mongering, put down the phone and pick up your life. Snake oil salesmen will come and go…but acceptance, love and family will always endure.
Sometimes people send emails asking us to promote their products/services or give opinions about them. And some of these products and services are clearly problematic or even abusive for autistic people.
We recently got an email from a scientist seeking to create a technology they hoped to license to Apple Watch that would monitor an autistic person’s stims–the rhythmic movements we make when we need to regulate our emotions—and alert about the person’s stims. They then seek to develop ‘a whole set of wearable devices to capture all aspects/features of [stimming] in ASD in near future.”
While the scientist claimed that the product would be “supporting the autistic community with a technology to promote Self-Advocacy,” this technology does not support self-advocacy at all. It supports the absolute friggin’ panopticon of the ABA industry, which seeks to license new and crueler tools to monitor, grade and punish autistic people—especially those who are intellectually disabled—for our natural ways of being.
But here’s the really interesting part: the scientist identified as autistic. So, we wrote back.
“Thank you for your email. Autistics for Autistics does not support ABA in any way, shape or form and cannot endorse your research that enables ABA and its harmful impacts on autistic people.
“Monitoring gadgets like this only enrich the developers and licensers without providing something of value to the end users. They end up being forced on autistic people who are not given the opportunity to say no and that is unethical.
“It is our hope that autistic researchers consider their own quality of life as they go down the research path, think about what services and products or social research could meaningfully improve the quality of life for autistic individuals and focus on that, because that is rewarding work. You are young and still have time to shift your path in that direction.”
As to the scientist’s aspirations that AppleWatch would ever pick up such an application, we’d invite anyone who finds that plausible to look at the autistic apps supported by Apple, including Proloquo, GoTalk, Keeble and Time Timer. Or travel to Cupertino and watch the developers there, pacing and fidgeting and stimming their way to a new suite of amazing applications and products that legit do improve quality of life.
We have the right to stim, to move in the ways we need to move to regulate our bodies and emotions. Nobody should be monitoring, stigmatizing or shaming us for it. Join us each year on September 17 for our online event, the International Day of the Stim. 😊
On October 18, A4A rep Anne spoke before a committee preparing a review of the Accessibility for Ontarians with Disabilities Act (2005). As the legislation stands, autistic people are not listed among the disabilities covered therein. We believe autistic should be included among the disabilities covered in the AODA. This is our statement.
Intro
Autistics for Autistics is Canada’s largest autistic-led advocacy group. We are an international affiliate of the Autistic Self Advocacy Network, the largest autistic-led advocacy group in the world. We consult governments, businesses and other entities on disability accessibility for non-speaking and speaking autistics, as well as those with intellectual disabilities.
Autistic people’s human rights and accessibility needs are frequently violated in schools; at college and university; in housing; employment; healthcare; and other settings. Our community also disproportionately suffers from poverty due to segregation, access barriers, bias and other discrimination.
Add “autistic” to the AODA
The words autistic or autism are not included in the lists of disabilities protected under the legislation designed to protect the human rights of disabled Ontarians, (the Accessibility for Ontarians with Disabilities Act, or AODA).
Because autistic people are not included as a group in AODA legislation, we are not able to effectively utilize the legislation when seeking redress for human rights violations.
It is false to claim one can imply “autistic” under the umbrella of intellectual disability in the AODA. There are thousands of autistic people with significant disability, whose IQ is over 70. If the autistic person has an IQ over 70, AODA rights legislation is not seen to apply to them because autistics are omitted from protection under it.
Conclusion
Autistic people are sometimes told that parent groups can speak for us. But of course the viewpoint of a disabled person is different than the experience of their parents. Parents should not be speaking as the sole representatives of “autism,” nor as architects of AODA legislation. Nothing about us without us.
We at Autistics for Autistics would like to meaningfully consult on this policy to make sure our community is included. We were not included in past consultations. We want “Autistic” listed as a condition, directly, in the AODA.
Thank you.
On February 24, 2022, one of our members spoke to the accessibility-focused meeting of the City of Toronto’s Our Plan team–the City’s new 30-year plan for urban planning, sustainability and quality of life in the Six. Here is her statement:
I’m Anne Borden King from Autistics for Autistics Ontario, the autistic-led advocacy group. We are not a parent group, we’re a group that’s led by and run completely by autistic people. We’re thankful to the city for recognizing the importance of neurodiversity and inclusion. I’m going to talk today about housing access, since segregated housing approaches really circumscribe the entire lifetimes of many autistic and intellectually disabled people in Toronto.
When inclusion committees talk about accessible housing, they pretty much almost always forget or leave out intellectually disabled people. In fact, the Ontario Auditor General found that 89 percent of housing funds in this sector go towards segregated housing, where developers get funds to build things like houses on remote streets where autistic and intellectually disabled people are grouped, segregated from regular community life.
These residents have no choices about even basic daily decisions. Families place their adult children in these group homes not because they want to, but because they’re told it’s their only choice. These spaces are not regulated or meaningfully inspected–and a lot of abuse happens there, including by the people who work there, since security background checks of staffers are not required by law. Sometimes people who work there end up being jailed for violence against the residents.
This is not safe, accessible housing. This is institutional living and it has no place in Toronto in 2022.
We know there is another way because programs in other cities are doing it, where autistic and intellectually disabled people have their own apartment, choose their own roommate and have their own support workers, as many people with other disabilities can. Programs in Ottawa and in the US, for example, have been shown to work well and benefit intellectually disabled people because they can live in the community instead of being segregated. This also benefits the community!
Toronto’s government can do something. Our City can make its commitment clear: that institutions and group homes are not the answer, and commit to replacing them with supported independent living, with a clear deadline for doing so. It can develop pilot programs based on best practices, where intellectually disabled people can have the choices they deserve. The City can, in its inclusion documents, make it a mandate–instead of segregated units being built, to prioritize supported independent living– for people with intellectual disabilities.
Please consider this and we hope you’ll reach out to Autistics for Autistics to access our inclusion reports and recommendations. Thank you.
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