Blog

Report on our first year – and looking ahead

by Anne Borden, co-founder

A year ago, we launched our website/social media and planned our first direct actions and campaigns. Our small group of founders–who discovered each other on social media–had come together to build the first province-wide autistic self-advocacy group.

In the year since our founding, we’ve focused on capacity-building and campaigns around health, employment, education and human rights.

In doing so, we are challenging the assumption of many Ontario policymakers that our needs can be understood by talking with our parents. In fact, our needs are best understood by talking with us. As an activist/self-advocacy organization, we are here to claim our space in the autism policy dialogue in Ontario.

Here are some of the ways we made ourselves heard in 2017-18.

Coalition and Community

Supporting the Closure of Sheltered Workshops. In 2017-18, we stood with Community Living Ontario and other advocates in a statement supporting the end to “sheltered workshops” in Ontario, where disabled workers are exploited, working at a fraction of minimum wage. Following the Ontario Government’s decision to close them, Ontario Bill 148 also guaranteed that the term training cannot be used by companies as an excuse for unpaid labour.

With other disability and labour organizations in our province, we will continue to stand united against any attempt to re-open sheltered workshops or to undo Bill 148.

The Disability Day of Mourning is an event founded by the Autistic Self-Advocacy Network (ASAN), a US self-advocacy group. On March 1, around the world, disability rights advocates hold vigils in honour of disabled people who were killed by their parents or caregivers. The vigil honours those lost and draws attention to the injustice that murderers of autistic and/or disabled people are routinely given lighter sentences by the criminal justice system.

A4A held vigils in Newmarket and Toronto. Many thanks to Mandy Klein, Sarah McFadyen and Raya Shields for leading these vigils.

The SpectrumWorks Job Fair is held every spring in Toronto, to bring autistics and employers together for interviews and information. Employment is a major issue in our community, in terms of both opportunity and accessibility. We were glad to be there to speak with autistic attendees, parents and employers about employment in Ontario.

A big thank to the SpectrumWorks organizers for inviting #actuallyautistic groups to the event and for asking us to advise on next year’s event!

In June, we marched in York Region’s LGBT+ Pride Parade. It was a super-fun event and welcoming space for all sexualities and neurotypes! Thank you to the YR Pride for welcoming us, we will be back next year.

We also co-ordinated an autistic-specific seminar with the Ontario Disability Support Program Action Coalition. Director Kyle Vose spoke about how to apply for ODSP, specifics of the benefits and how to appeal a decision. Thanks to Brandon Wulff and the AIDS Committee of Toronto for organizing and offering free space for the event. We are proud that ODSP AC has invited us to sit on their Action Committee (thanks Never Poplar for volunteering!) and we look forward to articulating the issues specific to autistics, and to supporting this important advocacy group.

This weekend (Sept 22), we marched in the Toronto Disability Pride March. The purpose of the march is: “To be visible and show that we have a voice in our community and a right to be heard. …To celebrate and take pride in ourselves as a community of people with disabilities.” We are looking forward to being a part of the march and other disability pride and advocacy events throughout our province.

Claiming Space
In Ontario, public autism events have usually been led by parent groups, with no meaningful input from autistic people. We are changing that. Here are a few events we organized in 2017-18.

Raise Our Own Flag – action. The annual Flag Raising at Toronto City Hall for “Autism Awareness Day” is triggering for many of us. This event is organized by non-autistic people who use terms like “epidemic” to describe us. SIGH….So we decided to show up with our own flag: the Neurodiversity Pride flag. Nic Hull silkscreened up a beautiful flag and we were on our way!

As Talia Johnson wrote: “The counter-rally was not against Autism Ontario, but for showing diversity and ensuring inclusion of autistic people in discussions.”  Prior to the AO event, four of our members spoke (via megaphone, because we were sidelined) about their experiences in the broader autism community and what needs to change. The event organizers did listen and we hope that next year the Neurodiversity flag will be raised and our realities no longer on the margins at City autism events.

Autism Speaks Doesn’t Speak for Us – action. A few months later, some of us counter-leafletted at the Autism Speaks Walk-a-Thon. We held a big banner which read: “Autism Speaks Doesn’t Speak for Us” (thanks to Jeff Chislett for making it!) and handed out our leaflets, which outlined facts about A$ on one side, and facts about neurodiversity on the other. We also handed out hand-made stimmy toys to kids attending the Walk, because the event was not at all sensory-friendly. Thank you to Sarah McFadyen for the idea and for making them! People liked the stimmies and we hope it helped: it felt good doing something that could have an immediate effect.

Even though it was hard to stand there and we did get some harassment, it’s important to be a presence and we will continue to be.

The International Day of the Stim. As A4A co-founder Rishav Banerjee writes: “Stimming brings us comfort and it brings us joy. It helps us deal with our pain. It helps us connect with the world and the universe around us in a unique and special way. Most importantly, it is a form of self-expression. An Autistic person’s stims are as unique as them, and they deserve to be respected as such.”

In that spirit, a group of us decided to start an international day to celebrate stims, with gatherings by London Autistics Standing Together and Canadian Autistics United in Winnipeg, among others. We used #stimday to get a discussion going on Twitter and ran a Stim day blog. Like most pride events, Stim Day is fun but exists for a serious reason. Under ABA, autistic children’s stims are often weaponized, taken away or “extincted” through physical or psychological abuse. We hope that in the future, autistic stims can be honoured for what they are: an important part of our lives and our health.

Our Positions

Sheltered workshops. We co-authored a statement in favour of our government’s closure of sheltered workshops. As MP Joel Hardin’s stated in his response to our Candidate Questions in November: “Sheltered workshops, which segregated and often underpaid their workers must continue to be a thing of the past. So-called ‘training’ under these (and other) circumstances has been too often a euphemism for exploitation. In addition, integration into the wider community, rather than hiding people away in this fashion, is clearly a preferred option—this is, after all, 2018.”

We couldn’t agree more. Unfortunately, the NDP did not get a majority and with “Ford Nation” in office, we may once again be fighting on this issue. We’re ready.

Autism Pseudoscience.We authored 2 reports on autism pseudoscience. In our first, on autism cure regimes, we documented the presence of these scams in our province and the lack of regulation around it, reaching out to pediatricians with specific tips for how to respond if a parent is using pseudoscience on their autistic child. In our second report, we discussed the specific risks of chelation for autism. When a story about autism pseudoscience broke on the CBC, many providers reached out and this started a broader discussion about how to improve the patient experience for autistic children and adults.

We will continue to educate and advocate around autistic patient issues in 2018-19.

ABA and the Ontario Autism Program. In 2017, our group formed in a particularly grim policy climate, where the ABA lobby was about to gain total dominance in our public education system. As the Government’s new Autism Program (OAP) mandated that all autistic public school children receive only ABA, it also gutted all services for autistic adults. The hateful expression: “Pay now or pay later,” was used to create policy that harms autistic children, youth and adults in our province. We will never forget this sad chapter in our Provincial Government’s history.

The OAP is a symptom of the broader problems in the Special Education system in Ontario, which hasn’t changed in 40 years –despite progressive evolutions in other parts of our country and the world. To that end, we wrote and advocated in opposition to the Ontario Autism Program and to ABA in general. The OAP needs to be scrapped and Ontario needs to catch up with the 21st century. We hope to move forward on this in 2018.

Looking Forward

Neurodiversity and Stim Toy Library. Based on a model developed by Lei Wiley-Mydske and Lana Thomas that is used internationally, we will be making our own neurodiversity library, starting in the Greater Toronto Area. We are also inspired by the work of Canadian Autistics United and activists at Simon Fraser University who have developed a Stim Toy Library at SFU!

In 2018, we will work with the Toronto Public Library to create a housed collection that is also mobile to community events. It is an amazing way to outreach and share neurodiversity resources with all who are interested.

UN Envoy visit. In November 2018, we will be meeting with the UN Special Rapporteur on the Right to the Highest Attainable Standard of Physical and Mental Health, during his visit to Canada. His office requested a report from us on the status of autistic people in Ontario, with an emphasis on housing/institutional life and human rights.

We look forward to discussing the report and other issues in international context and connecting with other activists on this.

Education Reform. On the heels of the Ontario Human Rights Commission’s scathing report on Special Education, we hope in 2018 to be part of the public discussion on equity and human rights issues in schools for autistic and all disabled students. Only through addressing the realities and naming them can we as a province move towards meaningful reform.

While other education systems around the world are incorporating universal design and other important measures for accessibility, inclusion and dignity for all students, Ontario’s education system hasn’t made meaningful change in special education in decades. Restraint, segregation, isolation, school exclusions, verbal and physical abuse are part of the fabric of special ed in Ontario. Ontario needs a complete overhaul of its special education system. We hope to help in every way we can.

Employment. We will be advising SpectrumWorks and other job fairs and agencies about accessibility and other issues in the job search process and in the workplace. We also hope to work with the Ministry of Labour as well as the private sector to identify areas for improvement.

While the private sector has been working to create an interview and workplace environment that accommodates autistic employees, we need government buy-in to bring better standards across industries. A handful of IT jobs or some service positions don’t solve the problem for most of us. Many of us have limitations to how many hours we can work as well: thus, maintaining ODSP and other benefits are tied directly in with employment retention, poverty and wellness. We hope to gather more data and work directly with policymakers on employment issues in 2018-19.

Health Care Access. Our health care access initiative will begin with an open-ended survey of autistics in Ontario, focused around the Social Determinants of Health model and intersectional identities. We seek to present the results, with analysis, to health policymakers as well as physicians and create a better, more accessible health environment for autistic patients in Ontario.

Gratitude!
Thank you to all members–autistic and allies–who have been a part of the conversations on neurodiversity; human rights and autistic representation in Ontario as our capacity has expanded this past year.

Thank you to everyone in the group who has been involved in planning actions; making strategic decisions; moderating our groups; designing  materials; writing blogs, statements and reports; managing our website; building partnerships and coalitions; and keeping our group so cohesive, organized and active.

It’s been amazing to watch what has come from our core group’s early conversations just over a year ago. Autistic self-advocates are now a part of the policy landscape in Ontario, growing more visible and powerful around the issues that affect our lives. There is light at the end of the tunnel. We are shining it forward. Nothing about us without us.

 

 

 

September 17 is the First International Day of the Stim!

A while back, some of us at A4A decided to create a day to celebrate stimming. Welcome to the first International Day of the Stim!

What is Stimming?
Stimming is a term for repetitive body movements or moving/touching an object in a way that is stimulating to various parts of the nervous system. Although it is stimulating, it also often has a rhythmic, calming effect that helps neurodivergent people to relax.

Stimming isn’t something that only we do: it’s common for many neurotyopical people as well (think of tapping a pencil or twirling hair). The difference is autistics may stim more or in different ways. In fact, stimming is an incredible resource to help us manage sensory input as well as excitement or stress.

Our stims are something that should be respected as an essential tool for emotional wellness. Unfortunately, that doesn’t always happen.

“Quiet Hands”
Despite all that we know about the usefulness of stimming, it is still being repressed by ABA therapists. Stimming is the perfect example of when some therapists take an action that most everybody does – and say it’s not okay when an autistic person does it.

Some therapists or group home workers will grab a person’s hands to stop them from flapping or even strap them down. Some will tell parents or support workers to say “Quiet Hands” to a child whenever they flap hands. The effect of this is devastating, because flapping hands is a form of communication. To “extinguish” flapping is basically the equivalent of yelling “SHUT UP!” in a child’s face.

We all have the right to stim. We have the right to flap. We have the right to our bodily autonomy.  Stims help us relax, they make us feel better and they don’t hurt anybody. It’s time to stop the practice of “extinguishing” stims. It’s time for everyone to understand and embrace the positive role stims have in our lives.

Events on This Day
In London, Ontario, London Autistics Standing Together (LAST) is meeting up today at William’s for coffee and sharing stims!

In Winnipeg, Canadian Autistics United (CAU) is having a meetup that is focused on celebrating stims (Check their Facebook page for information.)

CAU Vancouver is also celebrating. CAU Vancouver was part of a group that developed a Stim Toy Lending Library through the Simon Fraser University library system. This awesome little library is also mobile for events in the community!

We are using social media to have a global conversation about everything stim. To learn more, visit the official blog for the International Day of the Stim or our Event Page. You can also follow us on Twitter @a4aontario to add your insights, photos and comments #stimday.

Wishing everyone in our community a safe and stimmy day!

 

 

Autism Treatment Scams in Ontario: A Report and Call to Action

All across the province of Ontario, businesses are making money off of phony autism treatments that are harmful to children —with little to no regulation by our government.

We have identified 14 Ontario clinics promising to cure autism or its “symptoms” through a range of protocols including chelation; injections; off-label prescription drugs such as long-term antibiotics; chemical castration; herbal and vitamin supplements; hyperbaric oxygen tanks; severely restrictive diets; and other regimes that are sometimes called “biomedical treatment.” There is no medical basis for any of these programs. Further, they are dangerous and potentially deadly to autistic children.

We are shocked that in Ontario there are few regulatory measures that protect children from this —and that it is nearly impossible even to censure MDs who prescribe major drugs and risky clinical treatments (such as chelation) for off-label use that claims to treat autism.

Meanwhile, children have died, been injured and suffer lifelong consequences from the painful and sometimes deadly regimes of “cure” culture.  The Ontario government and other regulating bodies need to take action on this crisis now.

What is an autism cure scam? How does it work in Ontario?

In a typical cure scam, a doctor or a naturopath promises to cure or “recover” an autistic child, drawing heavily on pseudoscience to mislead the parents into the scam. The scams feed into myths about autism, such as the fear that young children will fail without radical “early intervention”; that any outcome is better than autism; and that autistics are poisoned and diseased. None of these myths have any validity or basis in science.

Some Ontario naturopaths contract with MDs to write off-label prescriptions; other times, licensed physicians work directly at naturopathic clinics administering drugs and so-called treatments. Prescriptions are given for the use of antivirals, antifungals, long-term antibiotics, SSRIs and other medications as part of an autism treatment plan. The naturopath or MD may also swap out the autism diagnosis for another (such as PANDAS Syndrome or even Lyme disease) to justify prescription use.

There is at least one MD in Ontario doing chelation as an autism “cure”. Chelation is the process of using a chemical to strip metal from the blood, a risky process that is normally reserved for victims of industrial accidents. But as Emily Wilmingham writes, some companies “promote chelation as an autism treatment. It is not one. One of the metals in our bodies that we need to live is calcium–for example, it keeps our hearts beating–and at least one autistic child has died during a chelation ‘treatment’ because it wiped the child’s blood of this life-supporting ion.”

Autism researchers are clear that there is no scientific validity to chelation-for-autism and that it carries serious risk. For more information, click here, here, here, here,   here, here, here, here, here, here, here,  here, here, here, here, here, here, and here.

Naturopaths also prescribe “cures” such as MMS, an industrial bleach, claiming that feeding it to children can “clean their gut”. Another popular treatment is massive doses of B12, delivered via injection by the parents each morning, combined with a host of supplements and dietary restrictions that make up the so-called Defeat Autism Now (DAN!) Protocol.

A recently proposed autism centre in Hamilton touting the use of “detoxification methods”, restrictive diets and in-patient programs for children has drawn concern from local residents as well as the Government of Ontario. We share those concerns and hope the government will take swift action to investigate.

How do autism cure scams harm children?
Autism cure regimes, supplements and restrictive diets have been shown to cause significant harm to children, both physically and emotionally. Aside from the obvious risk of any “detoxication” protocol such as MMS and chelation, the other protocols exist on a continuum of harm.

For example, many restrictive diets such as the DAN! diet specify minimal starches/carbohydrates, depriving children of essential calories. Vitamins and mineral supplements consumed over the recommended daily allowance are known to cause toxicity. Probiotics and other supplements carry their own serious health risks for children. And all supplements, as unregulated products in Canada, have been found to be routinely mislabeled or later even removed from stores for containing unlabeled and dangerous substances.

Those are just the physical consequences. Now consider a child’s experience of being given a handful of horse pills and injected with vitamins by her family every morning because they have been told that she is broken and sick (when in fact she is perfectly healthy). This is a trauma for any child, with lifelong consequences.

Putting children on autism “cure” diets can be a precursor to eating disorders such as anorexia and orthorexia. With the diet restrictions promoted at home and enforced by their family’s health providers and even at school, children have no escape from the eating disorder. It leads to social isolation (such as the birthday party where a child is forbidden from eating cake because it will “worsen their autism”). Restrictive diets also send a message to the child that being autistic (e.g., being who they are) is wrong. As Bethany Sheldahl wrote in her essay How Diets to Cure Autism Gave Me an Eating Disorder and Internalized Ableism: “It took me years to stop pathologizing myself.”

Through restrictive diet and vitamin regimes, the child’s bodily autonomy is violated and their health compromised by the people they are supposed to trust the most — their parents. Adding to the confusion, the child’s questions about these protocols are met with gaslighting platitudes: “It’s for your own good.” Clearly, it is not.

Who is accountable?

Our government is entrusted with protecting those most vulnerable. In this case, many of the most vulnerable are children, victims of their parents’ horribly bad judgement. Thus, we call on Health Canada to continue their research into better labeling of health claims on supplements and its other regulatory practices. As well, an official statement from Health Canada condemning pseudoscience would be useful towards educating parents and the broader public about autism cure scams.

We also call on the Ontario government to develop a strategy for dealing with this problem. The province’s current system for reporting is inconsistent and vague. There are no official complaint procedures and the complaints that do get through tend to get kicked from one Ministry/agency to another. As long as there appears to be so little regulatory power over these products in our province (or even a path for investigation), scammers will continue to prescribe “cures”. The Ontario government needs to develop a clearer path for reporting pseudoscience to regulators and post it on their website.

The College of Physicians and Surgeons (the governing body of MDs in Ontario) should be proactive in investigating medical fraud, misuse of prescription medications and all autism “cure” or “DAN!” programs run by Ontario physicians. They should revise their statement on so-called complementary medicine to acknowledge that children cannot consent to these dangerous protocols –and when parents are using these products on children, it is no longer an issue of “client choice”. As health care providers, the CPSO needs to better protect children through proactive oversight of its practitioners. (Unfortunately, the CPSO continues to endorse pseudoscience instead.)

Parent-led organizations in Ontario must end their code of silence about pseudoscience. For example, the websites of both Autism Canada and Autism $peaks Canada have extensive lists promoting how-to books and programs for restrictive diets and cure protocols. No amount of fine-print disclaimers can erase the fact that posting this information online is a form of endorsement.

Parents also are accountable for their choices. A reminder: there are many parents who say no to cure culture. It is not a function of the parenting impulse to engage in these treatments. Rather, it is a symptom of a broader social problem: the pathologization of autism as an “epidemic” to “cure”.

Silence is not an option. We urge allies to speak out if they hear about bogus cures and pseudoscience from family or friends. Demand accountability and a true system in our government for regulation and reporting. If you are not part of the solution, you are a part of the problem.

Conclusion: What can be done?
For an excellent example of health care, government and patient advocacy groups all collaborating in establishing reasonable standards of care (while raising awareness), see the Westminster Commission on Autism (UK). The Commission has identified the problem as within the reporting mechanisms (combined with lack of community awareness and) are tackling the issue head-on.

The Government of Canada and/or provincial governments could look to the Westminster Commission’s work in progress, as well as their recent report, entitled A Spectrum of Harmful Interventions for Autism for a model of how to establish a useful stakeholder consortium, research the problem and come up with solutions that include improving reporting mechanisms and developing strategies for effective public awareness.

There is no “cure” for autism and there never will be. Scientifically speaking, autism is not a disease, any more than being left-handed is a disease. Historically speaking, autistic people have always been a rich and diverse part of the human fabric. The reason for increased autism diagnosis is due to a radical shift in diagnostic criteria, not an imagined “epidemic”. Efforts to cure an autistic person are not only pointless, they are painful and often dangerous to the safety and well-being of all autistics.

Cure culture, whether in the form of pills, so-called treatments or behaviour therapy has no place in an inclusive society. In addition to their impact on the direct victims (the children), cure schemes have a ripple effect in diminished access to services and human rights for all of us. When parents talk about “curing” an “epidemic,” autistics are seen as a problem to eradicate and a class to exclude— rather than as a part of society. We continue to face discrimination, exclusion and abuse, all made worse by cure culture.

Autistic lives and wellness matter, at every age. So does the right to bodily autonomy. A4A will continue to advocate until regulators and lawmakers in Ontario establish effective processes to end autism “cure” scams. Because we need more than just education: we need enforcement.

Counter-Leafletting Autism Speaks Canada: Experience and Lessons from the Field

Members of A4A Ontario counter-leafletted at the Autism Speaks Walk-a-thon in Toronto on June 3, 2018.

Why we were there
Autism Speaks doesn’t have the support of most autistics. It uses hate speech to describe autism, using lies like “epidemic” and portraying autistic children as burdens. Autism Speaks does not have autistic people as decisionmakers in their organization. Almost none of their budget goes into useful services, mostly towards salaries and “research” (see below). In fact, 51 percent of their Canadian budget is consumed by overhead costs, well beyond the reasonable range according to charity watchdogs.

Autism Speaks Canada also gives more than $500,000 per year to MSSNG, the world’s largest Whole Genome Autism Study. Through it, researchers are attempting to identify autism-linked genes which, if found, would become part of prenatal testing, abortion and eugenics.

Our action
We had a big banner which read: “Autism Speaks Doesn’t Speak for Us” and several signs that we held. We stood at the periphery of the permitted event space and along the public sidewalk during the actual march. Every marcher saw us, due to our proximity to the start of the route.

We handed out information about Autism Speaks as well as alternatives to it that are neurodiversity-friendly, so that walkers could learn about and start to support organizations that truly help autistic people.

We also handed out hand-made stimmy toys to kids attending the Walk, because the event –with its blaring music and crowded, chaotic space — was not at all sensory-friendly. To me, it felt good doing something that could have an immediate effect to help autistics and I’m so glad someone in our group suggested it!

How walkers reacted
“Get the f—k out of here. You’re ruining a wonderful day.” How… wonderful? This dad, who was about 6 foot 5, was attempting to intimidate two of us. I steered clear of him but the other demonstrator felt bold and later walked up behind the guy to say “I’m still here…” So awesome. We did have some fliers crumpled and handed back to us, but a lot of people also took them and we got some thank-yous for sharing the information. We also gave a lot of fliers to  downtown passers-by to let people know that what they see with Autism Speaks doesn’t represent our community.

An event organizer approached us early on and tried to tell us we couldn’t be in the space. We held our ground and politely asked her to send over City Hall security, who could provide the zoning rights and regulations for our action. About an hour later, security came by and told us we could stand with signs anywhere on premises but could only hand out fliers in designated areas (public sidewalk). We assured them we didn’t want to make trouble, which they accepted, and we never heard from them again.

The kids liked the stim toys, which we got at the fabric store or made from craft materials. We saw a lot of children under pressure due to the sensory overload of the space, where Marvel characters, giant Elmos and a pack of cheerleaders (complete with Autism Speaks-blue pom-poms) were cramming in their space and a PA system the size of a North York bungalow was blaring pop music, live singing and speeches.

It’s not easy to counter-protest an event like this. You don’t know what you will encounter from attendees. In addition to some hostility, there was defensiveness. “Autism Speaks helped my child!” yelled one parent.” “So do we,” replied one of group. “Why are you here?” a lot of people asked, upset but sometimes also curious. We tried our best to educate in an honest and forthright way. Meanwhile most of us had our own sensory issues with the event itself, as well as past negative experiences with some of the institutions that were there. Being at the event required spoons.

What I learned
I learned the usefulness of waiting for security to come and determine our rights a counter-demonstrators, rather than trusting someone like the event organizer (who simply wanted us to evaporate). Asking to wait for security defused a potential situation, bought us some time and gave us the clarity we needed about our rights in the space.

An important tidbit from the security guard: “Next year if you want to leaflet on the grounds, you just need to apply in advance for the permit to do so.” Duly noted!

I also learned that having a two-sided flier – one positive, about neurodiversity and one with some hard truths about Autism Speaks was useful. We could hand them positive-side up and people would be feeling good when they flipped the page.

There was no media at the event. In a city this size, there isn’t time for it to be covered. A good option for getting media would be to attend a walk in a smaller city or town.

It had me thinking about the sunk-cost fallacy as well. Many families have invested a lot of time and money into the events and culture of Autism Speaks. How does one crawl out of that world? How often would that even happen? The measurable benefit of the action was to reach out to autistics who were brought to the event, to speak the truth in a public way – and to represent our own community. They have excluded us in their autism worldview, but we will make ourselves a presence anyway.

Looking ahead
I’m so grateful for everyone who supported and/or attended this demo; each played a crucial role in planning, reacting and maintaining our rights as a counter-demo amidst the commotion of the Walk event. Every day I am thankful for the fellow autistics who drive our group with their creativity, strength, camaraderie and strategic skills. #Actuallyautistics are now a presence in Ontario, invisible no more thanks to all those who support, plan and/or attend our actions. As we enter a Doug Ford era, our presence will continue to be essential. Nothing about us without us.

 

Employment for Autistics in Ontario: The Need for Private and Public Sector Collaboration

by Anne Borden

A4A recently had an info table at Toronto’s annual SpectrumWorks job fair. The job fair brings hundreds of autistics together with companies to interview for jobs such as banking, service, IT, admin and others. Neil and Xavier, the organizers, are committed to creating a better environment for autistics to find, enjoy and retain work in our province. It was really cool of them to reach out to #actuallyautistics such as our organization!

We met lots of autistics and talked about the job search process, workplace rights and other issues. We also did some education to the broader community. We were glad that the event organizers asked us for input to make next year’s interview processes and event space more autistic-friendly. It feels like we are on the cusp of an important breakthrough on the issue of unemployment in our community. The fact we were invited is a big step in self-representation and it is encouraging to see the private sector recognizing the strengths of autistic workers and actively recruiting.

But….

Efforts to train, educate and recruit employees in Ontario seem to be coming almost entirely from the private sector. Where is the Ontario government? Our rights in the workplace are protected by Ontario law (under the umbrella of disability), but how can we even exercise these rights if we’re not able to find employment? The Province is shutting down all sheltered workshops by 2019 –an essential step in human rights–but where are the proactive programs for autistic and/or disabled who are seeking employment?

There is great work being done by the private sector and some not-for-profits, but that’s not enough. Our provincial government needs to partner up on these initiatives, identify the scope of the challenges and come up with solutions. Most importantly, it needs to shelve its terribly misguided Ontario Autism Program.

Over the next few months, we will be doing an employment study of autistics in Ontario, both to assess needs and to get feedback and ideas from autistics across the province. This has never been done before and it is needed.

We will also be looking into sharing resources on autistic mentorship and networking activities around employment and workplace issues.

If you would like to be involved in this project, please Contact us. We will be updating our social media and blog as the project develops further.

Ontario Election: Candidate answers to our questions from Joel Hardin, NDP

Polls show that it is a two-way race for leadership between the NDP and Doug Ford’s PC Party in the Ontario election. NDP is consistently polling close to PC: meaning that the Liberals do not have a chance at leading the next government. For those who want to defeat the PC Party, the only strategic voting choice on Thursday is the NDP.

There is nothing that helps autistics in either the Liberal or the PC platforms. By contrast, the NDP have committed to consulting with autistic people in the development of programs and services, which no other party has promised or done. This is in line with their general principles about governance.

Answers to our candidate questions: Joel Hardin
NDP candidate Joel Hardin (Ottawa Centre) responded to our candidate questions, helping to outline the NDP position on the issues we asked about.

Sheltered workshops
Background: The government recently banned the long-standing practice of sheltered workshops, where developmentally disabled workers earned pennies for their work instead of a fair wage. Both the PCs and the Greens leadership have hinted they want to re-open sheltered workshops and the Liberals would not commit to a position.

Our question: Would the NDP work to maintain our provincial ban on sheltered workshops?

Hardin’s answer: “In a word, yes. Sheltered workshops, which segregated and often underpaid their workers, began to be transitioned out in 2016, and will be fully phased out by January 2019. The NDP supports the provincial ban on sheltered workshops and will not restore them.

“Sheltered workshops are, and must continue to be, a thing of the past. So-called ‘training’ under these (and other) circumstances has been too often a euphemism for exploitation. In addition, integration into the wider community, rather than hiding people away in this fashion, is clearly a preferred option—this is, after all, 2018.”

Representation: Nothing About Us Without Us
Background: Ontario is behind the times in terms of engaging autistic people in advising on our needs and the services that work for us. For the $500 million Ontario Autism Program, not one autistic person was surveyed or consulted with.

Our question: Would the NDP directly and meaningfully engage autistic people as you develop policies that affect our lives?

Hardin’s answer: “This should go without saying, but too often it must be said—those affected by government policies, such as people with autism, must have a direct role in the shaping of those policies and in how they are to be implemented. The NDP will overhaul the way Ontario delivers support services for people on the autism spectrum. We will ensure the full involvement of people with autism in every government decision that impacts people with autism – in line with the principle of ‘nothing about us without us.'”

Developmental Services Ontario and other programs
Background: Autistic adults without an intellectual disability can no longer access Developmental Services Ontario. In fact, there is no section of policy in Ontario that makes specific mention of autistics (other than the OAP, which only funds ABA for children). This  makes it difficult for us to navigate services.

Our question: Would your party work towards extending the DSO to meet the needs of autistics?

Hardin’s answer: “Yes. An NDP government will invest $67 million annually in increasing support for agencies, including the DSO. An NDP government will base care on a person’s need rather than their age so that care can follow them as they grow older.”

Budget and priorities going forward
Background: In 2017, the Ontario Association for Behaviour Analysis (ABA) hired Pathway Group to lobby eight Ministries at Queen’s Park. Today, under the Liberals’ $500 million government autism plan, only ABA therapy is allowed in schools –and all aides and therapists who receive public funding must now become ABA-certified. The Liberal Party has placed the autism services portfolio with the Ministry of Children and Youth and there is no policy or service model at all for autistic adults.

Our question: Would the NDP work to revise the OAP to reflect consultation with autistics, (which didn’t happen when it was developed)? Would you critically review how the OAP was developed and establish best practices building on lessons learned?

Hardin’s answer: “Andrea Horwath and the NDP will launch a comprehensive autism-support strategy, including on the Ontario Autism Program, built in full collaboration with families, caregivers, experts, and people with autism. Best practices are established, as you note, by critical examination of existing programs, remedying the flaws and making improvements. The NDP is committed to full consultation with A4A in this process going forward.”

Conclusion
In addition to the above info, the NDP platform lays out meaningful policy on a range of intersectional issues. The NDP has committed to provide drug and dental coverage for all Ontarians, making this care accessible to low-income Ontarians for the first time. The NDP also commits to “ensure LGBTQIA2S+ communities have access to affirmative and inclusive health care” with a number of inclusive policies and initiatives. The NDP also supports increased funding for mass-transit as well as green/sustainability plans and other programs that will serve all Ontarians.

For these and other reasons, we wanted to write this post on the eve of our provincial election. We hope that you can get out to vote and that the results of this election will be good for our communities as well as all of Ontario. Thanks for reading.

Why we oppose ABA in any form

by Autistics for Autistics Ontario

Autistics for Autistics opposes ABA in any form. Some of our reasons are below, followed by background on ABA and alternatives to ABA. (Please also read the hyperlinks for more information.)

Reason 1: Autistics who have undergone ABA are more likely to suffer from PTSD. The risk of suicidality is also significantly higher for ABA participants. Research shows that ABA is overwhelmingly traumatic and has a lifelong effect. One study linked increased exposure to ABA with increasing severity of PTSD, and the roots of PTSD were found in the first session for most study participants. There is also a correlation between ABA and suicidality according to a study by the International Society for Autism Research.

Reason 2: ABA training makes children vulnerable to abuse throughout their lifetime.
A child is not allowed to say “no” in ABA. ABA teaches compliance at any cost: children are told over and over to ignore their gut feelings and abandon their sense of personal space. Saying or expressing “no” is  punished with aversives such as taking away something the child loves. This has long-lasting psychological effects and can impact future judgement and relationships.

Reason 3: Young children who undergo IBI or ABA are denied a normal childhood.
Most centres keep toddlers and preschoolers in 25-40 hours a week of therapy at a time in their lives when they should be connecting with their families, playing outside and getting to know their peers. It is the ultimate segregation and, in effect, makes autistic preschoolers go to work every day rather than exploring their natural development as other children can.

Reason 4: Autistic people do not like or want ABA.
Autistics overwhelmingly report that their experience of ABA is negative. Autistics deserve to feel comfortable, safe and have dignity throughout their lives, including childhood and school. Unfortunately, our province does not recognize disability rights in this regard and still funds programs that force autistic people to receive a century-old “treatment” that they do not want.

Reason 5: There are better ways than ABA — but ABA professional organizations lobby for total dominance.
There is never one approach to anything, and yet ABA organizations will say theirs is the “only evidence-based practice”. It’s not. There are many wonderful accommodations and services that are left out of the funding models in places like Ontario, with tragic results. The elephant in the room is that the ABA industry wants it that way. Read our report on the Ontario situation to learn more.

History and philosophy of ABA
ABA, also know as autistic conversion therapy, is a form of Radical Behaviourism, which has its roots in the thinking of BF Skinner, who studied animal subjects in the 1930s and 1940s, using electric shocks and other aversives to control animal behaviour. ABA’s founder, O. Ivor Lovaas, did not understand autism and the myths he perpetuated still power the ABA movement.

Writing about his autistic patients, Lovaas stated: “You have a person in the physical sense –they have hair, a nose, a mouth, but they are not people in the psychological sense. One way to look at the job [of autism therapy] is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.” Sadly, in ABA literature we still often still see the idea that autism is a deviation to be fixed and a “real” child constructed through the therapy.

Countering this myth, Maxfield Sparrow writes: “Autism is not a shell surrounding a ‘normal’ child. …Autism in your child’s DNA, brain, sensory organs. Autism is so much a part of who your child is that many of us Autistic adults who are able to communicate, and who choose to talk about being Autistic, will tell you that it hurts us to hear or read phrases like ‘fight autism,’ because it feels like people want to fight us.”

Lovaas was also the founder of a brutal gay conversion program, which falsely claimed to stop young people from being gay. Gay conversion therapy is now illegal for children under age 18 in Ontario because it violates human rights. It has also been banned in many jurisdictions for adults because it violates the Charter. Similar to its founder’s gay conversion therapy method, ABA likewise attempts to convert autistics towards the goal of appearing “indistinguishable from peers” –at any cost.

The Practice of ABA
Through ABA’s early interventions, autistic children are exposed to hundreds of repetitive discrete trials, where they are forced to perform simple tasks over and over to earn rewards or –if they don’t perform– they are given aversives, which range from electric shocks and other physical punishment to psychological torture such as being isolated, having beloved objects taken away or providers refusing to address their communicated needs.

One example of physical aversives in ABA at a residential/day centre is the Judge Rotenberg Center in Massachusetts, where autistic and other disabled residents are deprived of food and given electric shocks to correct “behaviour”. While the Center has been condemned for its practices by the United Nations among others, note that none of the major professional organizations of ABA providers have condemned the actions of the Center. (For updates on the campaign to stop the use of shock aversives, visit the ADAPT website).

In Ontario, children as young as two years old are put into programs that consist of 6-8-hours per day of repetitive drills at a therapy centre – segregated from their neurotypical peers (who, unlike them, get to engage in free play and other developmentally appropriate activities.) At the end of the child’s day, ABA drills typically continue in the home because parents are told to continue the program there, essentially playing the role of therapist rather than parent. This can quickly erode trust and compromise the parent-child relationship.

Forbes science writer Emily Wilmingham points out: “With ABA, the burden is on the child to somehow understand and modify behavior in situations that they often aren’t even old enough to intellectualize.” With other approaches, “the onus is on the [parents and teachers] to understand and communicate with their child, rather than to try to ‘fix’ them.”

Why ABA doesn’t work
ABA’s impossible expectation (for the child to act the same as neurotypical peers) is a setup for failure –and failure is too often blamed on the child. Parents who start out with a standard ABA program may then be encouraged to increase the intensity of aversives; an example would be a parent who escalates the situation and engages in practices that are damaging to the child. Children who react naturally to the (highly unnatural) expectations and protocols of ABA are seen as “non-compliant”, resistant and burdensome to practitioners and even to some families. And then the situation escalates.

As a former ABA provider writes: “The overall concept of compliance training is an integral part of many ABA programs. The rule is, once you give a command as an ABA Therapist, you must follow through with it no matter what. If a child tries to cry or escape or engage in any other ‘behaviors,'” the therapist can’t intervene to help or comfort the child.

Even if the ends could justify the means, ABA doesn’t appear to actually work. Research reviews show that ABA studies have been historically plagued by poor methodology. As neuroscientist Laurent Mottron of the University of Montreal writes in his study, ABA research’s “efficacy has been called into question in the last decade due to poor-quality data, small effects, low cost-efficiency, and the evolution of ethical and societal standards.” Newer research in the neuroscience field is incompatible with the Behaviourist approach.

The Politics of ABA
There are alternatives to ABA; in fact, many jurisdictions outside of Ontario (such as the UK) have stopped funding ABA in favour of progressive approaches such as Universal Design. Other jurisdictions provide a range of service options, not just ABA.

Unfortunately, after the Ontario Association for Behaviour Analysis hired lobbyists targeting eight Ministries at Queen’s Park in 2017, the government unveiled a $500 million government autism plan (Ontario Autism Program) where only ABA is funded, only ABA is allowed in schools –and therapists who receive public funding (including SLPs and OTs) now must become ABA-certified. Ontario’s entire autism programming budget has thus been earmarked for ABA.

Some parent-led organizations also have professional relationships with the ABA industry. Autism Speaks Canada, for example, collaborates on an online documentary series which features children (too young to consent to having their supposed “social deficits” exploited onscreen) to promote the work of a Canadian ABA therapist. (Please Contact us if you would like to be involve in our campaign around this).

It is disturbing that ABA is the mandate in Ontario, since many jurisdictions have abandoned it and autistics consistently voice against it. Why the disconnect? From talking to parents, we have learned that some were frightened into thinking ABA was the only way to help their child. Also, since ABA is the only provincially-funded therapy, some parents and teachers may also believe that it is better than nothing.

ABA versus Acceptance
Some parents also support ABA for a more disturbing reason: the idea that their autistic child is not the child they wanted, and the desire to transform their autistic child into one that mimics a neurotypical child. An extreme example of this is the mommy-blogger who recently admitted to forcing her autistic child to attend a Sesame Street performance by dragging him through hallways and sitting on him, even as he screamed to leave.

Whether the child is autistic or neurotypical, every parent has to eventually accept that they are not getting the mini-me they may have dreamed of. The later this knowledge comes, the more damage is done. Many of us have felt this rejection from our parents and it doesn’t get any easier. No matter the therapies, we cannot change who we are. So when our parents perceive us as perpetually not good enough, not NT enough, it has a profound effect.

As Aaden Friday writes in their essay When You’re Autistic, Abuse is Considered Love: “I was told that I was loved every day, and yet I sincerely believed there were parts of me that I needed to destroy in order to be worthy of that love — and so I tried, and failed, and grew up traumatized, without ever understanding what healthy love looks like.”

Autistic acceptance is crucial to ensuring a child gets the supports they need. ABA’s focus on “behaviour” often makes it confusing for parents to recognize and accept their child’s needs, because much of the child’s communication efforts are mislabeled as “negative behaviours” to be punished rather than communication to be responded to. In addition to being cruel, this approach also stymies the problem-solving process and prevents positive accommodations and solutions from being implemented.

There is no “good ABA”
Some of us have been asked if we support “the good ABA”. But from the perspective of neurodiversity, there is no good ABA, because ABA fundamentally seeks to invalidate the authentic selfhood of autistic children. ABA approaches autistic children as a series of behaviours and deficits to fix and retrain, rather than as, well… people.

For these and other reasons above, we don’t see that ABA can be redeemed or re-branded: it should just be relegated to the dustbin of failed psychiatric approaches. And the sooner the better. It is heartbreaking to think of the many useful services and accommodations that have been neglected due to our province’s over-focus on ABA.

But it’s not too late to change!

Alternatives to ABA
What are the positive alternatives to the negative ABA cycle we’ve been experiencing in our province? Here is a brief look.

Universal Design. As with other conditions or disability, accommodations should be central to any home, workplace, school or public space. The concept of universal design is that accessibility is “a fundamental condition of good design.”

We have a long way to go in Ontario on universal design. Accessibility is too often left to the discretion of individual teachers, employers or others. For example, some Ontario public school teachers implement classroom design changes that help autistic students and transform lives, but these projects are currently all ad hoc. The Province should consult with autistics and teachers and undertake a Universal Design study for making classrooms across the province accessible and friendly for autistic learners.

The principles of universal design can also be applied in the workplace and in public spaces. We are seeing promising changes from the IT sector in making job interviews and work spaces and arrangements accessible for autistic employees. Government should consult with autistics and employers about their best practices to learn and implement them in a range of areas.

At present, autistics are not consulted by the Ontario Government when developing the programs that impact us. Autistic youth and adults should be consulted when policy is made. The Province can follow the disability rights approach, where the clients are consulted on the accommodations and services needed. This approach can be used to  look at best practices across the board.

Autistics as Experts. Currently, the Province’s approach to autism services has been determined by lobbying groups often led by parents. This is unfortunate, because most parents are not autistic, they are not experts and they may know very little about what truly works for autistics. And as hard as this may be to hear, their goals do not automatically align with the goals of their children.

Policymakers: learn what your autistic constituents need –from us, not our parents. Also, look to other jurisdictions that take a progressive approach to disability and/or autism. Our province’s services need to transform into a fair, helpful system and away from the wrong-headed and bloated service model we currently suffer under.

Moving Forward
Autonomy in communication, work, housing independence, comfort, freedom and dignity are important to us all – yet none of these appear on any Individualized List of Goals and Objectives for ABA Services. In fact, Ontario’s current Autism Plan does not even mention AAC, employment, housing, services for adults or a host of other community priorities. Only ABA is funded.

If Ontario is to become a province that embraces equality, policymakers need to move sharply away from the approach of making parents and ABA providers the sole stakeholders and instead focus on the experiences and input of autistics and other disabled Ontarians.

ABA tried to teach us never to say no. But we are going to remain noncompliant, stand with our allies and say NO to ABA in this province. Because when you say no to ABA, you discover what you can say yes to. It’s time for our province to find out, too.