Blog

Corrections to recent media coverage of Autistics For Autistics (A4A) Ontario

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.

False Divides
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.

A4A Representative Appointed to the Ontario Government’s Autism Advisory Panel!

61933988_878356142510470_1782560171147395072_n
Matthew Jason Dever

We would all like to congratulate Matthew Jason Dever, an active A4A member from rural eastern Ontario for becoming a part of the Ontario Government’s Consulting Panel on Autism Policy!

Matthew is an autistic self-advocate, a web and graphic designer and a father of five children, including an autistic teen, tween and adult. He has also done federal advocacy with other members of A4A.

Education is a top focus for Matthew, who strongly supports inclusion-first models of education, where all kids are full supported in mainstream classes. We are very glad to know that Matthew is advocating so strongly on this issue, as an informed parent and a person who has been through Ontario schools. We know that school exclusions lead to life exclusions–and it is time for Ontario to catch up with inclusion in schools.

Matthew will be serving on the panel with other stakeholders from the community and is one of two autistic self-advocates to serve on the committee. This is the first time that autistic self-advocates have ever served on the panel and it is something to celebrate!

As the panel gets ready to convene, we are preparing a report to the government with our full recommendations for a practical approach to policy that is based on autism acceptance. We will be publishing it here on our blog in the next several weeks.

The time is now to move forward and make meaningful changes, for fairness and equality. As studies have shown, inclusion lifts everyone and we are all better for it. We are proud to be a part of the road to inclusion and proud of Matthew’s work on the panel!

Raising the Neurodiversity Flag at Toronto City Hall!

flag
Photo by Anne Lesserknaus

On April 15th, A4A and members of our ally community gathered for the first-ever neurodiversity flag raising at Toronto City Hall! Here is a section of our speech for the occasion:

“We’re here today to celebrate diversity. Our flag has a rainbow infinity symbol, the symbol of the neurodiversity movement. Neurodiversity means that –like BIOdiversity– all of us have a role to play in society …and we should be valued for who we are. Included in public life, such as school and employment. For nonverbal autistics, this also means equal and fair access to communication, such as AAC.

“Our society is beginning to move ahead, closer to inclusion. That is something to celebrate.

“We are also here today to remember. This year marks the 10th anniversary of the final closure of Ontario’s large residential institutions, where our brothers and sisters before us were locked away from their families and communities, unable to leave, facing abuse as they laboured without pay on the institutional farms, such as Huronia. Only recently has our province reckoned with this dark chapter in its history. We will now observe a moment of silence for Ontario’s residential institution victims and survivors…

“As we raise the flag, let’s think about how far our society has come to bring us all here today. Also, let’s think about the road ahead. We have seen how inclusion and acceptance lifts us all. We need to keep working on it, together.

“Thank you everyone for coming to this flag raising and being a part of this day. We will now raise the neurodiversity flag.”

A4A Members’ Speeches to the Ontario Accessibility Town Hall, April 2019

On April 10th at Queen’s Park, provincial MPP Joel Harden organized an accessibility town hall, to discuss access issues in Ontario. Two of our members, Anne Borden King and Cathy Wright, spoke about access to AAC and other accessibility and human rights issues.

Each speech was 3 minutes, in a series of speeches by people with a broad range of disabilities, read into the public record.

SPEECH 1: ACCESS IS A RIGHT
I’m Anne Borden, a co-founder of Autistics for Autistics Ontario, Ontario’s autistic led and run self-advocacy organization.

For me, accessibility means:

1. Communication choice. Autistic people who are non-verbal or semi-verbal have the right to access for augmentative and accessible communication, AAC. Whatever form they want to use, whether sign language, on paper or using technology or other means.

Unfortunately, ABA providers in Ontario typically believe in waiting at least 6-12 months before “allowing” a child to use AAC (and this is in the best-case scenario). It can add up to years of a child’s thoughts and feelings not being heard. Many schools and special education classrooms here don’t prioritize the right to communicate for nonverbal children. Some of our members did not get access to AAC until they were teenagers, some as adults. Some autistic people never get access to AAC.

Also, institutions such as health care, the workplace, housing and services need education on communicating with AAC users.

No one should be denied AAC in the name of “therapy” or any other reason. We can educate on AAC and we must, in Ontario.

2. Inclusion. Accessibility for autistic people also means inclusion in classrooms as the first choice, as the norm. We know this works because we’ve seen it in other places outside this province.

Accessibility means young autistic children growing up IN their communities, not in the segregated setting of the Intensive Early Intervention Centre. 98% of autistic people, when polled, oppose intensive ABA centres. For an autistic child spending their days there, at work, when they could be playing and connecting with their peers instead, is wrong.

Removing autistic children from their community leads to a lifetime of segregation.

3. Autonomy. Accessibility means autonomy in housing, employment opportunities and being a part of the social fabric. Right now, in many ways our province is still living in the past. Although the last residential institution closed 10 years ago, the mentality of segregation has not disappeared. Some service agencies are still following the medical model of disability instead of the social model. There are many ways to make fair employment and autonomy with the right supports a reality for more autistic adults.

We have to understand why accessibility matters. We have to understand how inclusion lifts us, all of us. And our policymakers and service agencies need to understand that access also means: access to consult on the decisions and plans that impact our lives.

Nothing about us without us

SPEECH 2: THE COMMUNICATION RIGHTS CRISIS
I’m Cathy Wright and I’m here to talk about the Communication Right Crisis.

The majority of non-speaking autistic people have no access to communication tools.  The majority are presumed to be intellectually incompetent.  Presumed by professionals, their teachers, and even their families to be incapable of thinking, learning, and directing their own lives. We live in an ableist society that makes assumptions about people based on their support needs.  They are labelled low-functioning or severely autistic because they often need support with the basics of daily functioning and because there are sometimes behaviours that are not well understood, like meltdowns.  And rather than providing communication tools such as Augmentative & Alternative Communication systems, the focus ends up being on “behaviour”.

Although this is a huge issue, affecting all areas of life, I’m going to focus on the education system, where the opportunity is greatest to make needed changes.

I have a 23-year-old son, who is a non-speaking autistic man.  From early childhood, he was presumed incompetent at school.  As parents, we were given very poor professional advice.  We were not told that a communication system might change our son’s life.  In a psych test at age 14, my son scored less that the 1st percentile. 

At 17, a support person who had experience  with supported typing offered a letterboard to my son and we began having the first conversations with him ever. 

We learned that he was a polite, empathetic, sensitive, funny kid who was interested in art, politics, world affairs and travel.  He desperately wanted to be provided with an education but that didn’t happen.

Although his school embraced his communication system and recognized his intellect, he still had very high support needs.  He still needed help using the washroom, eating, sitting in a classroom and managing sensory issues and the only place they provided support staff was in special education classes where he couldn’t receive high school credits. 

When we tried to provide a support worker for him to attend credit earning classes, we were prevented from doing this due to collective bargaining agreements.  He attempted to use the PLAR system to be awarded a credit, but it wasn’t an accessible system. 

I fought with a school superintendent over that, who just stopped responding to my emails as a way of dealing with me. My son left high school at age 21 with no credits and at 23, still hasn’t been able to access the education system in a meaningful way.  He is taking a math course right now at a local college but ended up changing his status to audit because his school offered him a comprehensive accessibility plan and didn’t follow through on the plan. My son would rather be in a learning environment, even under those circumstances, than not be learning so that’s what he’s doing.  Incidentally, there are a number of colleges in the United States that admit students who use AAC.  Canada lags behind in many ways.

If you’re inclined to think that a non-speaking autistic person who is discovered to have the capacity to think, learn and communicate in a sophisticated way is a miracle of some kind, know that we have met well over twenty people just like my son, who are using Augmentative & Alternative Communication devices to direct their own lives.  Yet it remains that the vast majority of non-speaking autistics are trapped inside their bodies with no communication tools.  They are institutionalized in high numbers.  Their support in school is primarily behaviour management.  Why not instead offer communication tools?

Our schools lack the capacity to support communication in non-speaking autistics.  They have staff they call autism teams who don’t have a clue about AAC and this is even true of Speech Language Pathologists.  Similarly, their psychologists will proceed with testing on students who have no communication tools, and declare them intellectually incompetent.  Most parents don’t know any better because we look to these professionals for information.

School systems blame lack of funding and other resources, but they are not even providing the most basic support to their non-speaking students.  Communication is a basic human right.  When communication rights are denied, of course the result is students who are perpetually in a fight/flight state , who get labelled incompetent. Even when parents who do know better advocate for their children, school push back hard and gaslight us.

Currently, there is much in the news about ABA for autistic children and I don’t have time to talk about how problematic that is.  I will only say that it’s past time to recognize that we have a communication rights crisis. Schools must be mandated to provide communication systems to their non-speaking students and this must happen now.

 

 

 

Quarterly Report, April 2019

We’ve been busy since January’s Quarterly Report! Here is some of what’s new:

Making History in our Province
In March,  for the first time in history, autistic people were invited to Queen’s Park to discuss autism policy. MPP Amy Fee welcomed us in this first conversation and it was a moment that none of us will ever forget. In April, we were invited to serve on Ontario’s autism policy consultation committee–the first time that autistic people have consulted about autism policy in our province and that an Ontario government has sought meaningful data on our community. We are very glad to now have a seat at the table and a voice in the decisions that affect our lives.

Outreach and Education
This spring, we rolled out our partnership with the Centre for Addiction and Mental Health and University of Toronto professors to develop materials and present to medical schools in Ontario on the topic of autistic patient experiences and communication. In March and April our members presented to two CAMH teams and a group of Psychiatry Residents from University of Toronto. We’ve also been consulting with a range of service providers on how their services can be improved for autistic clients. We are thankful to all our community partners for inviting us to be a part of these wonderful projects!

Disability Day of Mourning
Every year on March 1st, the disability community comes together to remember the victims of filicide – people with disabilities murdered by their family members. Vigils are held on the Day of Mourning in cities around the world. This year’s Toronto vigil was organized by Rishav Banerjee, Kim Crawley, Sarah McFadyen, Raya Shields and Cathy Wright, at Ryerson University. It is a difficult but important day. Thank you to everyone who came out to remember and to say: never again.

Accessibility Town Hall
In April, two of our members (Anne Borden and Cathy Wright) attended the Accessibility Town Hall at Queen’s Park, organized by MPP Joel Harden. Each spoke about the right to communicate and the need for access to augmentative and alternative communication (AAC)–communication methods used by non-verbal autistics. Anne and Cathy pointed out that AAC is often denied to people out of ignorance or in the name of “therapy.” They also advocated for broader community education to improve access to employment, medical care and other aspects of daily life for AAC users in our province.

Human Rights in Schools Initiative
We are working with community partners on a committee for collecting data about school exclusions of disabled children and the use of restraint and isolation in schools. Currently, the committee is researching best practices and getting input from groups who have made meaningful change in other jurisdictions such as in Alberta, which recently banned the use of isolation rooms in schools. We are looking forward to working to ensure Ontario school districts collect data on every incident, make their classrooms transparent and have systems for accountability to stop abuse.

Ontario Human Rights Commissioner Renu Mandhane
In February, we met with the Ontario Human Rights Commission to talk about human rights issues for autistics in our province, with a focus on our province’s education and special education systems. We are honoured that Commissioner Mandhane met with us and we learned so much from our meeting. We hope to meet again soon around advocacy matters and human rights for autistics in our province.

National Coalition
We are now in a network with all regional chapters of Autistics United Canada and London Autistics Standing Together, as well as self-advocates in western provinces, around national autism policy advocacy. We are united on advocating for fair representation in policy consultation. On April 8 and 9, members of our group met with members of the federal government on Parliament Hill for initial conversations on consulting about autism policy. The meetings went very well and we will keep you informed with follow-up!

Neurodiversity Flag Raising
On April 15, we will raise the Neurodiversity Flag at Toronto City Hall. It will be the first time it has been raised in Ontario. Flag raisings are also taking place in Halifax, Winnipeg and Vancouver. Neurodiversity means that all of us have a role to play in society and we should be included and valued for who we are.  In addition to speeches, we will observe a moment of silence for Ontario’s residential institution victims and survivors. The Neurodiversity Flag will fly for 24 hours.

Donations
We are now accepting donations! We use donations for making our events accessible with ASL interpreters, for printing information flyers, for materials such as our Neurodiversity Flag and table banners and more. Want to donate? Click the Donate button on the menu.

If you would like to stay up to date on what we’re doing, follow us on Twitter or find us on Facebook at A4A: Public Page.