Autistics for Autistics Ontario (A4A) is Ontario’s province-wide autistic self-advocacy group. We are autistic-led and run. We do policy advocacy, community activism and outreach/education. Learn more about some of the projects we are working on here.
Last week, something historic happened that was long overdue. Two autistic people were chosen to serve on a provincial panel about autism policy in Ontario. This was the first time autistic people had ever been chosen to consult on the provincial policies that affect our lives and it is something to celebrate! It’s an important moment for diversity and disability rights–and especially for autistic people.
We are disappointed that two major media outlets chose not to cover this story as news, but instead seemed to leverage it to smear autistic self-advocacy and the disability rights movement. We are also disappointed that other media chose not to cover this story at all!
Below are the specifics of the media mistakes — and our corrections:
Correcting The Ottawa Citizen
The Ottawa Citizen’s coverage focused on one of the panelists who is not representing A4A and incorrectly labeled them as representing us. This person had posted tweets on their personal profile wishing harm on people and their families.
A4A had nothing to do with these tweets and the article should never have implied that we did. The paper’s fact-checker never contacted us and that is a major oversight by the paper.
As an organization, we do not condone use of violent language or wishing death on people. We also do not engage in Twitter wars with trolls or anyone else, because that is not productive or fair. We have asked the Ottawa Citizen to retract our name from the story since our social media team has never engaged on Twitter in that manner.
Correcting the Toronto Star
The Toronto Star’s reporting on the government panels showed (in our view) a shocking level of bias against our group and disability self-advocacy.
Reporter Laurie Monsebraaten did not contact us to talk about our inclusion on the panel, nor did she reach out to our representative, Matthew Jason Dever. Monsebraaten instead pursued a false narrative about “outsiders” on the panel being there to threaten a specific brand of autism therapy (ABA) and incorrectly reported that ABA is “evidence-based,” attempting to normalize a pseudoscientific falsehood.
In the story, Monsebraaten focused solely on the perspectives of two people from a pro-ABA lobby (who are married to each other) as well as a member of ONTABA, Ontario’s association of ABA providers, who are a strong lobbyist for ABA-only funding. No one other than ABA lobbyists and a government representative were featured in the story–a clear lack of balance in reporting.
In the article, the two autistic self-advocates on the government advisory panel, who are there to represent autistic perspectives, were grossly mischaracterized as tools of a conspiratorial plot by the Tory government. The following quote was presented uncritically and without context: “The anti-ABA voices on that committee … are on the committee to tell the minister what [Lisa MacLeod] wants to hear….She wants to have an excuse to ruin the ABA program that has taken 20 years to build in this province.”
To be clear, autistic people are not “outsiders” to discussions about autism services and policies. Autistic self-advocates need to be at the table in that discussion and it is unconscionable to suggest otherwise.
When a member of our executive committee emailed the Public Editor of the Star asking them to correct false statements about autistic panelists, the Public Editor never responded.
We would like the Star to retract this article and print a correction.
Similarly, another article that was published the next day in the Star (also by Ms. Monsebraaten) reinforced the bias of the preceding article, with its main source being an ABA behavioural therapist who is opposed to the government’s decisions involved in appointing panelists and labeling the decisions as “the stacking of individuals with clear anti-treatment agendas.”
Additional quotes featured from other opponents of autistic panelists include the following: “I have some serious concerns because I have had personal interactions with them over social media and I know them to be anti-science.”
That statement (which wasn’t presented with balance) is a false representation of our group. We are firmly pro-science, which is why we oppose a pseudoscience (ABA) that has been discredited by the Cochrane Review, the gold standard of scientific research publications, as well as other esteemed research publications.
As the Cochran Review and others point out, the existing research into ABA lacks the basic criteria for scientific methods. For anything to be proven scientifically, there need to be large scale studies undertaken with many groups–for example, some receiving ABA; some getting other services but not ABA; some receiving no services. They would have consistent demographic guidelines as well as clear, objective means of measuring outcome. Studies would then need to be replicated by multiple researchers and peer reviewed. None of this has ever been done for ABA, which relies primarily on anecdotal information from parents of children enrolled in ABA; ergo, there is no evidentiary basis for the claims of the ABA industry.
Given this, the act of identifying the scientific weaknesses of ABA would be rightly labeled “pro-science” not “anti-science.”
We request the retraction and/or corrections of that article as well.
Our Stance on ABA
As explained on our website, Applied Behaviour Analysis (ABA) is an autism therapy based on the works of BF Skinner and O.Ivar Lovaas–-predicated on a medical model of autism (autism as a set of behaviours to “fix”) and a holdover from the era of residential institutions.
ABA stands in stark contrast to current understandings of autism based on the social model of disability. Under the social model of disability, the community is best served through inclusive services and accessible design.
A recurring accusation that we keep hearing from ABA providers is that our organization is “anti-science” for our opposition to ABA along with its proponents repeatedly calling it a “gold standard” and “evidence-based” treatment for autism.
We do not deny that we oppose ABA and in fact are joined by 100% of all autistic self-advocacy groups worldwide. When polled, 95% of autistic individuals also oppose ABA.
Media such as the Toronto Star need to be asking themselves why they are trying to normalize a therapy whose very recipients actively campaign against it.
Monsebratten’s article contained a quote suggesting that being “anti-treatment” is our “agenda”. The term treatment, however, is a marketing term of the ABA industry that suggests autism is a disease they can fix. Science tells us that autism is not a disease; the American Psychiatric Association and the DSM-5 are clear on this. Autistic people, as disabled people, require services and supports for inclusion, not “treatments”. Our group’s advocacy for useful supports and services is a reasonable position; in fact, it is one that many in the scientific community take.
“Fixing” autism under the ABA model is further flawed by its core myth that autistic children can be converted to act neurotypical. Fact: O. Ivar Lovaas (ABA’s founder) is also the founder of gay conversion therapy. Is it consistent to believe that it is unethical to do conversion therapy on LGBT+ individuals, but to think it is somehow ethical to do to us because we are disabled? For these and other reasons, we oppose ABA.
We know there are people in the industry who don’t like our stance on ABA, but we also work with many neurotypical parents, providers and community members who share and agree with our position. As well, we partner with individuals and agencies with whom we disagree, because we have the capacity to collaborate towards mutual goals.
Some in media seem to want to write up a battle, with two sides and a simplistic, formulaic storyline. But in reality, there is no true dividing line between “parents” and “neurodiverse people.” Fortunately, we can (and do) work together–and will continue to.
To conclude, disability self-advocacy groups deserve to be treated respectfully by media. This includes fact checking with us before making claims about our group, and contacting us for stories about policy. It also means writing about us with balance and learning about us, to have an informed perspective.
More specifically, autistic people have the right to self-advocacy and we are a crucial part of the way forward in autism services. To characterize us as outsiders in a discussion of the policies that affect our lives is ableist and biased. Autistic adults were once autistic children and we deserve to have a say at the table. Nothing About Us Without Us.