Autistic Self-Advocacy in Ontario: Unstoppable in 2019 & Ready for 2020!

Photo by Anne Lesserknaus

Autistics for Autistics and other autistic-led organizations have been working hard on making inclusion happen in Canada, removing access barriers, educating the public and working to get policymakers to meaningfully consult us about autism policy. Here is some of what we’ve achieved in 2019!

Policy Advocacy Win: Proposed Legislation to End Seclusion and Restraint in Schools
A4A was proud to work with parent advocates in educating provincial policymakers (MPPs) about seclusion, restraint and other abuse in Special Education settings. (Read our reports to the Ontario Government, the Government of Canada and to the United Nations).

In December, MPP Michael Coteau drafted an Ontario legislative bill to end seclusion and to regulate/track the use of restraint in schools in Ontario. (Read the Bill). Legislators will vote on the bill in the new year.

Currently, there are no uniform standards for tracking, or regulating restraint, seclusion or exclusions in Ontario schools. We have been raising the alarm about this since our founding 2 years ago, as have concerned families across the province. A4A’s reports on restraint and seclusion in special education, as well as the crucial data gathered by Autism Advocacy Ontario (AAO), were the cornerstones of beginning to document and bring attention to the magnitude of this human rights issue in our schools.

We are thankful to our members, to AAO and the incredible parents who knocked on doors at Queen’s Park — and to MPP Coteau for having the persistence to bring this Bill to a reading. We hope it is passed soon and will continue to update about this important movement!!

Policy Advocacy Win: Consultation on the Ontario Autism Plan
In 2019, for the first time in Ontario history, autistic-led advocacy groups consulted with and served in an advisory role to the provincial government on its autism policy. Amazingly, under previous governments, no autistic people were on the community panel at all!

In spring and summer of 2019, A4A members:

  • Met with MPs from all major parties;
  • Met with Provincial Ministers; and
  • Presented a detailed policy report to the Government through our official representative to the Community Consultation Panel on Autism Policy.

Thank you to members of the current government for seeing the need to shift gears and having the foresight to understand that disability policy should not be made without consulting the very disabled people it is designed for. There were 2 autistic representatives on the Panels, who represented 10 per cent of panelists. It’s a great start (coming from 0%) and we are looking forward to sharing more of our resources, ideas and experiences with provincial policymakers in the coming years.

The CBC and AMI reached out and interviewed the autistic panelists. Thank you to the wonderful reporters who dug into the story with openness and curiosity! We were proud to share these stories with our families, friends and community.

By contrast, the Toronto Star never interviewed the autistic panelists, but rather labeled autistic panelists as “outsiders” and A4A as “anti-science”. The Star also referred to a mainstreaming change, where Ontario Kindergartens would be welcoming less than one autistic student on average, as a dangerous “influx” of autistic students. This is extreme bias in reporting. The Star would not retract clear factual errors and its Public Editor did not even respond to letters by autistic Ontarians. Please boycott the Star.

Education: Groundbreaking Initiatives
in 2019, A4A was active in education outreach throughout our communities. A4A members:

  • Led neurodiversity workshops with LiveWorkPlay and Viability Employment;
  • Presented about AAC and communication rights at the Ontario Parliament’s Disability Consultation Forum;
  • Presented at SpectrumWorks Job Fair;
  • Presented on access to health care at University of Toronto medical school and at the Centre for Addiction and Mental Health (CAMH);
  • Took part in the access and inclusion panel at Arch Disability Law’s Annual General Meeting;
  • Met with Centre for Independent Living Toronto to discuss children’s rights and plan our Little Free Neurodiversity Library, which will launch in spring 2020!

Neurodiversity Flag Raising at City Hall
On April 15, for the first time in history, the Neurodiversity Flag flew at a City Hall in Ontario! Taking a cue from activists around the world, we gathered and raised the rainbow infinity flag to celebrate our pride. Afterwards, we had an awesome hangout–with cake–making this historic moment even sweeter. Read more about the event here.

Community: Building Connections and Coalitions
A4A became an official International Affiliate of the Autistic Self-Advocacy Network in 2019!! We also co-founded Canada’s first coalition of autistic self-advocacy groups, Autistic Advocates’ Coalition of Canada. We are excited to be supporting and connecting with ASAN and for the powerful coalition we have built nationally with Autistics United Canada and London Autistics Standing Together.

Our parent auxiliary and general membership continue to build bridges across generations and between autistic adults and neurotypical parents. We join together for discussion, culture and political advocacy, perhaps most importantly this year to educate and inform about seclusion and restraint.

We connected across disabilities with a broad range of disability rights groups in solidarity and connection. We also did activism across many intersecting identities—standing against racism, taking part in LGBT pride events, marching with our sister Greta Thunberg in her Montreal and Calgary rallies and joining in solidarity against the concentration camps at the US/Mexico border at the vigil outside the US consulate in Toronto.

Vigil and Direct Actions
In addition to joining in the above direct actions, A4A organized the Toronto vigil for the International Disability Day of Mourning, which happens in cities around the world on March 1. At the vigil, advocates comes together to remember disabled victims of filicide – people who were murdered by their family members/caregivers. It is a difficult but important day. Thank you to everyone who came out to remember and to say: never again.

We also organized a counter-protest to the Autism Speaks fundraising walk. Autism Speaks supports research into eugenics trying to prevent people like us from being born. Autism Speaks Canada gives more than $500,000 per year to MSSNG, the world’s largest Whole Genome Autism Study, attempting to identify autism-linked genes which, if found, would be part of prenatal testing and eugenics. Also, few of AS’s donor dollars go to services; 51 percent of their Canadian budget is consumed by overhead costs, well beyond the reasonable range according to charity watchdogs. We are thankful to all those who counter-leafleted and also those who offered support.

Several of our members also stood in counter-protested to Ontario Autism Coalition rallies. Like most other grassroots autism groups, A4A does not support the OAC’s mandate (for autism funding to be only for ABA). Our members leafleted and talked with attendees about different approaches to policy and about inclusion and the Neurodiversity movement.

Our Reports: Blueprints for Genuine Reform
The old model of autism policy in Canada goes something like this: “Do the same thing, but more of it…and maybe with a new name.” We don’t buy into that approach at all: it is the reason that 80% of federally funded housing for autistic and IDD folks is still segregated housing, and why more—not less—autistic and IDD students are being streamed into segregated classes in this country. We need a total paradigm shift in Canadian autism policy and autistic-led groups will be a major part of it.

A4A wrote a report to the Government of Ontario, outlining needed reforms in the following areas: AAC/communication access; early childhood programs; inclusive education; transition to adulthood; employment; housing; health care; and reform to autism services and funding models. We consulted with experts on all areas of the report and shared it with leaders in every party at Queen’s Park. We also met in person with our MPPs and presented our recommendations at public forums led by them. Thank you to all our members who created, researched, wrote, communicated and showed up to advocate!

A4A also delivered a Report and Recommendations on autism and disability policy to the Government of Canada. We are working directly with our own MPs in the hopes that the Government of Canada will begin to shift its course away from segregation and towards inclusion and acceptance of autistic and intellectually/developmentally disabled (IDD) Canadians.

Pro-Science Advocacy
Like other autistic self-advocacy groups, A4A are strong advocates for science and against autism pseudoscience. Our Physicians’ Guide to Autism Pseudoscience is an updated companion to our Report on Autism Pseudoscience and our reporting to the UN about this issue.

Our members have worked to keep children safe from phony autism cures that include bleach, turpentine, hyperbaric oxygen chambers, THC, severe food restrictions, phony stem cell “cures” and chelation. One of our members is currently advocating to stop chelation as an autism treatment in Ontario and the case is going to a judicial review in 2020.

What’s coming up in 2020?
In 2020, we will have big news about open hearings into human rights in special education. It is time to bring transparency to the special education system in Ontario!

A4A will also be rolling out our traveling Neurodiversity Lending Library, traveling around the province and permanently housed at CILT.

We will be doing more outreach on AAC and communication rights, employment, housing, inclusive education and access to health care.

We will continue to support human rights for children …despite being told by one MP that we should “just focus on autistic adults.” We were all children once and we remember and know very well the systems that keep autistic and IDD children trapped in segregation–and that have led to segregation, poverty and inequality in our own lives. We owe it to the next generation to do all we can to pave the way for equality, access and inclusion.

Our activism is strong because we do not stay confined in the tiny world of in-group self-interest. We are united with all disabled people, of all backgrounds, ages and identities, towards a more just Canada. We stand shoulder-to-shoulder with parents and families who want equality, inclusion and safety for their children. As part of the neurodiversity movement we are motivated by concern for human rights, not profit. In that way, our movement is a disrupter of the existing autism service industry. Because at the end of the day, inclusion mainly requires an investment from the heart.

We hope you will join and support us in 2020! Thank you.



Neurodiversity: Books, blogs and podcasts for holiday reading & listening!

Happy Holidays! For everyone who likes to curl up with a book, website, podcast or film, we are sharing some of our favourites this season.

All the Weight of our Dreams. Ed. Lydia X.Z. Brown et al. This phenomenal anthology of essays and other writings by Autistics of Colour includes work by one of A4A’s founders, G.A., among other writings that educate & inspire. A must-read!! 2017. DragonBee Press. Lincoln, NE.

Autistic Community and the Neurodiversity Movement. By Steven K. Kapp. This is a completely free book—free!!—with research and essays on some of the most crucial topics of our times. Essays include “My Time with Autism Speaks”, by John Elder Robison, articles about Autscape,  autistic culture, media representations, diagnosis, history of the neurodiversity movement and a crucial essay by Shain M. Neimueller and Lydia X. Z. Brown on the movement to stop shock torture at the Judge Rotenberg Centre. Go Steve Kapp for making sure the content is free! 2019. Read it here.

Inclusive Education for Autistic Children.
By Rebecca Wood. Research into practical methods for making classrooms inclusive for autistic kids, with the added bonus of an intro essay on the theme of “what is autism,” throwing into question much of what mainstream researchers think they know about us. (!!) Share with the educators and practitioners in your life. 2019. Kingsley. London, UK.

Loud Hands: Autistic People, Speaking. Ed. Julia Bascom. A diverse collection of essays written by and for Autistic people. Includes historical, foundational classics by some of the pioneers of the neurodiversity movement. Much flapplause for this anthology! 2012. The Autistic Press. New York, NY.

By Steve Silberman. Breathtaking in its thoroughness, a history of the clinical concept and diagnosis of autism, cultural experiences and interpretations of us, the origins of the neurodiversity movement and more. Send a copy to your health care provider too! 2015. Avery Press. New York, NY.

Nothing Without Us. Ed. Cait Gordon & Talia C Johnson. Realistic and speculative fiction with disabled protagonists, co-edited by Talia, one of A4A’s co-founders. Bold, funny, insightful and poetic–it is a page turner! 2019. Renaissance Press. Toronto, ON.

The Autism-Friendly Guide to Periods. What?? YES. Yes, someone finally wrote this book! autistic author Robyn Steward, this is a detailed guide for young people aged 9 to 16 on the basics of menstruation. Created in consultation with young people, an online survey and medical professionals. Informative, accessible and awesome. 2019. Purchase online

Alliance Against Restraint and Seclusion. The Alliance’s mission is “to influence a change in policy so that restraint and seclusion are not used in schools. In reducing and eliminating the use of restraint and seclusion, schools will become safer for students, teachers, and staff.” Amen to that! To support, learn and connect, visit their website, which also has social media info:

Autistic Hoya. This comprehensive website is by Lydia X. Z. Brown, a disability justice advocate, organizer, educator, attorney, strategist, and writer whose work has largely focused on violence against multiply-marginalized disabled people, especially institutionalization, incarceration, and policing. Their website is an invaluable resource on these and other issues, with detailed information about the Judge Rotenberg Centre for activists and researchers as well. Check it out!

Autistic Self-Advocacy Network. The umbrella group for much of the neurodiversity movement in the US and Canada, ASAN has done an amazing job of creating informative, accessible, principled content that supports autistic people across all our intersectionalities. Well worth reading & worth sharing.

Foundations for Divergent Minds. FDM is a framework designed by neurodivergent people for use by families and professionals working with autistic and neurodivergent children. FDM works on the principle that when a child struggles it is because their surroundings need to be adjusted. FMD focuses on areas including: Sensory Integration; Executive Function; Communication; Social Interaction; and Emotional Regulation. FDM is a portable, affordable approach that is based on equity and access. YES!

In The Loop About Neurodiversity. This website by student and autistic advocate Cassandra Crosman is not to be missed!! It covers the full spectrum of issues in our community with useful resources for education and taking action on our human rights as well as insightful, concise analysis of key issues facing our community. Also on social media.

Thinking Person’s Guide to Autism. Just great: essays, articles and so much more, primarily by #actuallyautistic people, with the basic principle that the experts on autism are autistic people! PS: TPGA is also a book, soon to be updated. Link:

Deej: Inclusion Shouldn’t Be a Lottery. This Peabody-award winning documentary covers 6 years in the life of D.J. Savarese, a young, nonspeaking autistic writer. This film exploring the power of inclusion and what it is like to mediate the world as a nonspeaking person. As Savarese writes: “I won the lottery when my parents adopted me from foster care; I won it again when they included me in regular education.” Don’t miss this film! Streaming or DVD available here.

Unspoken. This is a point-of-view documentary film about the life, ideas and perceptions of Emma Zurcher-Long, a 14-year-old autistic girl with unreliable speech. It focuses on the right to—and the importance of–communication access, as well as covering complex issues of family, friendship and the stories we tell in our culture about what autism is–and isn’t. Streaming here.

Wretches & Jabberer. This film chronicles the world travels of disability rights advocates Tracy Thresher and Larry Bissonnette, who faced a future of social isolation in adult disability centers until their lives changed when they got access to AAC. It follows them on a world tour to educate about autism and AAC. As Larry observed: “nothing I did…convinced people I had an inner life until I started typing.” Available to stream here.

This podcast is by Autistics United Nova Scotia chapter leader Alex Kronstein and is dedicated to neurodiversity, shifting perceptions, and changing the conversation about all forms of neurodivergence. So much to learn from this diverse, divergent podcast! On Soundcloud here

Noncompliant. This podcast by Anne Borden King explores children’s rights, disability rights, neurodiversity, pseudoscience and social control. Interesting guests from a range of fields, all neurodiversity-positive! Launched 2019, ongoing on iTunes, Stitcher and on its website.

Bill 160, calling for a ban on seclusion in schools, introduced in Ontario Legislature

December 9, 2019  Today, A4A members Anne and Gaby were invited to attend Ontario Parliament for a reading of Bill 160, Education Amendment Act (Use of Seclusion and Physical Restraints) 2019, presented by the Hon. MPP Michael Coteau.

This bill was a long time coming. It is due to the efforts of A4A and other advocacy groups, along with the persistence of MPP Coteau to bring it to a reading.

A4A supports every aspect of this important bill. At the bottom of this post, we offer information on how you can support it.

Who Made it Happen
We are very thankful to MPP Coteau for writing and sponsoring Bill 160. We are also grateful to Michelle and Angelina, mothers and tireless advocates, visiting office after office at Queen’s Park to gain support. A4A’s research and advocacy has been a key element of this movement, in coalition with other hard working groups and individuals such as Autism Advocacy Ontario and Hispanic Mothers of Autistic and ADHD Children Ontario. We are especially thankful to those who spoke about their personal experiences.

The Bill
The Private Member’s Bill focuses on 3 areas: seclusion, restraint, and exclusions.

Bill 160 calls for the abolishment of seclusion rooms.

An important condition in the bill is that “criteria must be met for the use of ‘calming or sensory rooms’ such as oversight by a regulated health professional”.  This is an extremely important part of the bill; without it isolation can just be renamed, rather than banned. We have seen isolation rooms being relabeled ‘calming rooms,’ when they are neither open nor voluntary.

Background: Disabled children as young as age 6 in Ontario public schools have been subjected to being locked in closets with chairs pushed against the door or kept in soundproof rooms with no way out nor to communicate–and no food or water for hours on end, sometimes day after day. This abuse has profound psychological effects and is never justified.

Most Ontario school boards have refused to adopt uniform tracking mechanisms to measure how often this happens, but estimates range from 16%-35% of special education students. In Alberta, where tracking of seclusion is finally happening after public pressure, there were 700 reported instances of seclusion in September 2019 in Edmonton schools. Advocates in Alberta, as well as many US states and across Canada, are calling for reviews and bans of this practice.

Bill 160 also calls for policy establishing “criteria must that be met for the use of physical restraints, mandatory, same-day written notification of the parents or guardians [and] mandatory reporting to the Education Minister on each use of restraint in schools.”

We feel that tracking is a good step forwards towards naming the problem, as we are seeing in Alberta, Chicago and other jurisdictions that are now tracking and regulating the practice. We advocate further, for a full ban on restraint.

Background:  Shockingly, there are currently NO criteria for use of restraint in Ontario schools, nor any tracking or reporting mechanism for establishing accountability around the use of restraint. This element of the bill remedies that problem.

Restraint is also used as a form of neglect. We have heard from Ontario parents about their disabled children being tied in their wheelchairs and neglected in special education classrooms. Because interest groups lobby against cameras in classrooms, thee are barriers to documenting this abuse and holding abusers accountable. Tracking the use of restraint will help to quantify the problem and begin to address broader issues and goals for classroom transparency.

Bill 160 offers protection to Ontario children from being excluded from school on the basis of their disability and establishes mandatory reporting of hard and soft exclusions to parents and to the Ministry. We support these important elements of the bill.

Background: Both hard exclusion and soft exclusion of disabled students are common in Ontario. Hard exclusion is when a child is expelled based on their disability. Soft exclusion is when a child is made to feel so unwelcome that their family is forced to withdraw them to home education or place them into segregated classrooms. Internal exclusions, where children are stigmatized by being asked to stay home from school during field trip days or told there is “not enough support” for them to attend school most days, are also very common in Ontario.

Our Report to the Ontario government (Inclusion is the New Gold Standard) outlines the problem as well as ways to create a culture of inclusion in Ontario schools, based on our consultation with inclusion experts. Likewise, AAO’s survey of 568 respondents found a pervasive pattern of segregation and exclusions of autistic students [add cite] in Ontario schools, and makes recommendations for inclusive practices.

Importance of Bill 160
If passed, Bill 160 would be a powerful way to protect disabled students’ human rights. It represents a sensible, morally-responsible path and creates a conversation that is long overdue: asking legislators whether they support human rights for children in our schools or not.

This is an opportunity for multi-partisanship on a clear human rights issue. We hope that parties will unite, rather than divide. Ontario’s disabled children are depending on it.

Note to Media
We are available to speak about Bill 160 any time: contact us here. We can also connect you with other groups in Ontario’s coalition against restraint and seclusion.

What You Can Do
To support Bill 160 , please PHONE your MPP to let them know your view. Consider also sending a letter via Canada Post. Try to meet with your MPP in person about this. Please note: most MPPs do not read their constituent emails, so we do not advise emailing. You can find your MPP’s contact information here.

Tell your MPP that you support MPP Coteau’s Member Bill 160, banning seclusion rooms and creating tracking systems for restraint and school exclusions. Share your own experiences and perspective. If you get voicemail when you call, ask them to call you back. Follow up to make sure they have gotten your messages.

Please follow A4A on Facebook or Twitter for petitions, actions and more. You can read our Report to the United Nations on our website.

Thank you for your support.

Autistics for Autistics: Our Statement on the Daisy Group

October 30, 2019. Following is a Q and A about a recent media story that included us.

Who is A4A?
Autistics for Autistics (A4A) is a Canadian autistic led-and-run group. We educate and advocate for communication access and policy changes in education; housing; employment; and health care. We are non-partisan. A4A is an international affiliate of the Autistic Self- Advocacy Network and a member of the Autistic Advocates’ Coalition of Canada.

In addition to policy advocacy, we do community education, meetups, activism and events such as our Neurodiversity Flag Raisings at City Halls and the annual Disability Day of Mourning. We support a National Disability Strategy and we oppose CASDA’s National Autism Strategy. We do not receive money from any organizations or government entities and we are an all-volunteer organization. (Read more about us on our website!)

How did the Daisy Group connect with A4A?
In April 2019, a media training group called the Daisy Group emailed us to offer pro bono media training. We saw they had done pro bono for other groups and accepted the offer in good faith. Daisy’s website contains a list of clients that they have worked with in the past, which include non-profits and First Nations groups.

What service did Daisy provide?
Four of our members attended two, 2-hour sessions at Daisy that involved talking about who our group is, neurodiversity and Ontario autism policy. We thought the sessions would have practical tips about appearing on camera, etc. but they didn’t.

How did it end?
A4A ended its relationship after 2 sessions, when we began to suspect a possible partisan connection between Daisy and the Ontario PC Party. If there is one, then they were very dishonest by not disclosing it to us.

When we let Daisy go, we told them our concerns that they may have been trying to leverage a relationship with us for a larger project with a government client. Daisy’s leadership responded with angry emails accusing us of “libeling” them (referring to our email which was only sent to them) and demanding we apologize or they would seek legal counsel. We then asked the Daisy Group to leave us alone and they have.

Is A4A working for a political party?
No. We are a strongly non-partisan group. A4A’s Code of Conduct forbids anyone in leadership from working for a politician or being a voting member of any political caucus.

We meet with representatives of all 4 major parties in Canada and share our policy documents with all parties as well. We do not endorse partisan platforms nor do we take advice, direction or gifts from anyone in a partisan position.

Why did A4A meet with the Tories?
For the same reason we have met with all the other political parties. Because we are a disability advocacy organization and meeting with politicians to discuss our ideas and concerns is literally our job.

We talk to everyone in politics who will listen–because among autistics in Canada we have a devastating crisis of poverty; human rights abuses are commonplace; and the suicide rate of autistic people is 9x higher than the general population’s. We consult widely in our community and with specific policy experts in developing reports and recommendations for change that is desperately needed in Canada.

Other autism advocacy groups also meet with politicians, the only difference being that they are led by parents as opposed to our group, which is led by autistic adults. Our mandate is the same as any other self-advocacy and disability rights groups — Nothing About Us Without Us.

Who paid for the Daisy Group sessions?
We don’t know. They told us it was a pro bono project.

Did the Tories or the Daisy group direct A4A in any manner?
No. You can’t tell autistic people what to do or say and then we do it. That’s not really a thing.

Would A4A recommend the Daisy Group’s services to a friend, relative or colleague?

Why not?
Because we didn’t get the service we expected and the company seemed to lack basic transparency.

Our Report to the Government of Canada: Introduction

We are blogging our Report and Recommendations to the Government of Canada, by section. Below is our introduction to the report.

Full report: A4A National Policy Report & Recommendations, 2019

Our National Mandate:  End the systematic segregation of autistic people in Canada. Inclusion and dignity for all.

About Us
Autistics for Autistics is a Canadian autistic led-and-run self-advocacy group. We have experience in advising on policy provincially, with white papers that apply provincially and federally. We also engage in community education and outreach projects and host events for autistics, families & friends through our chapters in Ontario and New Brunswick.

We are an international affiliate of the Autistic Self Advocacy Network (ASAN), a provincial member of the Autistic Advocacy Coalition of Canada, and part of the broader disability rights movement internationally.

About Autistic Self-Advocacy
Autistic self-advocacy can be summed up in the phrase nothing about us without us. Like the rest of the disability rights movement, we reject the segregation and barriers that still exists in schools, employment, housing and public life.

The autistic self-advocacy movement is based on a few facts:

  • We will always be autistic.
  • We want to like and feel good about ourselves, not be told we’re broken, toxic and wrong.
  • With simple accommodations, we can be included in school, work and all society.

About the Report
Autistic people in Canada are living with an unmitigated crisis of poverty and disadvantage.

We face high rates of unemployment, precarious housing, and homelessness.

Many of us do not receive health care and other services because of communication access barriers.

We often face exclusions, stigma and abuse in schools.

Our suicide rates are nearly 9 times that of non-autistic people.

These are all major social problems and it isn’t “living with autism” that causes them. In large part, these crises are directly caused by Canadian social institutions’ lacking the awareness or political will to break out of a pathologizing, segregationist approach to autistic and intellectually disabled (IDD)  people.

When a disability is accepted and accommodated, the disabled population fares better in life and the entire society is lifted in the process. Autistic/IDD people deserve that chance in Canada. Canada deserves that chance. That is why we advocate a National Disability Strategy that would include autistics across policy portfolios, together with other disabilities, rather than the current mandate, which is to silo autism services in the Health Ministry.

In this paper, we outline the problems that need solving, as well as specific policy solutions around communication and accessibility in the areas of: early childhood; education; housing; employment; health care access; and community/social education. We also identify the broader policy project of moving from a segregation model for autistic/IDD services towards one of inclusion.