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We are blogging our report and recommendations to the Government of Canada, by section. Below is our discussion and recommendations about health care access and community education.

Full report: A4A National Policy Report & Recommendations, 2019

Access to Health Care
We advocate for a national education program for health care professionals to train them on AAC and communicating with autistic patients, as well as simple steps to make hospitals, clinics and the dentist more accessible for autistic people. This education program should have autistic self-advocacy organizations in the lead for developing materials and outreach.

Like everyone else, autistic people need health care. Unfortunately, communication barriers and sensory differences limit our access to health care. This can affect our ability to seek care and the quality of the care that we receive, especially in the ER.

Many providers do not understand how to communicate with AAC users or assume “incompetency” when they meet an AAC user. This creates a barrier to care and can prevent someone from seeking health care when they need it. As one of our members notes: “I have had medical staff look at me using my device, and then ask if I needed a guardian to sign it a form for me. Despite me walking in, by myself, and advocating for myself.”

We recommend teaching incoming and established health care practitioners:

• to understanding the broad communication capacities of AAC users;
• how to communicate with an AAC user (such as waiting for them to finish typing, rather than talking over them); and
• the need to keep AAC accessible during any medical care visit.

The Emergency Room
Because some practitioners don’t understand AAC or other autistic communication methods, autistic people may receive sub-standard care in emergency medical situations.

The environment of the ER is very stressful to autistic people, because we take in every single sight, sound, word/click/beep/door slam/yell/sob/whisper, smell and feeling (often including others’ emotions) when we enter the ER. We have heard that NTs can internally block these things out (seems weird, but ok) and many of us have our own external methods for helping to block these out so we can function in this over-stimulating environment. These include:

• Noise canceling or muffling earphones and ear plugs
• A stim toy to stay grounded (usually held in our hands or kept close)
• Talking about a special interest
• Echolalia
• Rocking jumping or spinning, as a form of self-regulation
• Our phones, to connect with other autistic people and friends/family

When these are not available to us, or if they are and things are going badly, we may go into sensory overload. This can look like:

• Shut down: going selectively mute, not looking up, seeming unresponsive, being unresponsive.
• Meltdown: crying, yelling, screeching, flailing, falling, swearing (Note: some of us also have Tourette’s)
• Any versions of the above and others.

These responses could usually be prevented with sensory considerations and communication. They are frequently misunderstood. As one of our members, who had reached the breaking point, recalled “The EMTs thought I was having a meth withdrawal.” Autistic people are vulnerable to abuse, systemic violence or denial of care in these situations, especially those who are Black, Indigenous, People of Colour or Trans. We heard from members than some are afraid to give their autism diagnosis when receiving EMT care or even decline to seek care because of stigma and fear.

The results can be deadly, as in the case of Oliver McGowan, an autistic teen who was in the ER following a seizure and was given a powerful anti-psychotic to which he did not consent and which his parents repeatedly told doctors he had previously had an adverse reaction to. He died from Neuroleptic Malignant Syndrome, brought on by the medication. As Oliver’s mother has said: “We strongly believed that doctors were misunderstanding Oliver’s normal autistic behaviours.”

Autism pseudoscience

Autism pseudoscience (or so-called “alternative” or “biomedical” autism treatments) do not have any positive effect on autistic children and there is no medical basis for any of them. They are dangerous and potentially deadly to autistic children. They cause psychological damage, including PTSD, to the children who are forced to endure them.

All autism pseudoscience causes psychological damage to the children who are forced to endure them. Also, the myth that autism can be removed from a child leaves no room for parents to accept their child for who they are. A child who is being told they will be “detoxed” until no longer autistic, is not given the opportunity for healthy self-acceptance. When the miracle cure doesn’t arrive, it can have devastating consequences for the child and family.

As the Westminster Commission on Autism (UK) writes in its report recommending improved policy and practice on autism pseudoscience: “Health care fraud is big business and autism is one of its many targets.” The United Kingdom has recognized the problem of autism pseudoscience and is working to create more regulations around it. (We encourage you to read their informative and engaging report). Canada lags behind, still largely relying on so-called “self-regulating” colleges to keep practitioners in check. The problem is, this doesn’t work and children are in danger.

Our federal government needs to follow the UK’s lead and take action. Please read our Physicians’ Guide to Autism Pseudoscience for more information.

Recommendations: Health care

Practitioner training

• Training for both homecare support workers and staff in long-term care facilities for understanding how to best support autistic people as they age.
• Partner with medical schools to create an education module for health care practitioners (especially ER) on how to communicate with AAC users.
  • Alternative: support and promote independent efforts at these education modules.
• Recommended unit for medical schools: “Ask an Autistic,” where autistic people discuss their end-user experiences to educate incoming professionals on communicating with autistic patients.
  • Alternative: support and promote independent efforts at these education modules.
• Recommended education unit for dental students: trauma-informed care for autistic patients. Evaluate and update existing programs.
• Support online tools for autistic youth and adults on communicating with health providers and institutions (Tools should be created by autistic individuals in partnership with medical institutions, not by “autism service” providers).

Recommendations: Regulating pseudoscience

• Genuine government oversight of self-regulating colleges (chiropracty, CPSO) to ensure that autistic children are not exposed to dangerous quack treatments.
  • A provincial “do not use” list of autism “cures” such as chelation:
    • This can be modeled on the NHS’s Do Not Use For Autism list and the FDA’s list of banned autism “treatments”.
  • Right to consent laws that protect children from harmful autism pseudoscience like chelation.

Community education
Canada has little in the way of community education programs to keep autistic people safe and allow us access to necessary services. As mentioned, 99% of Canadian medical students are not trained in speaking with someone who uses AAC (and 25% of autistics are nonverbal or semi-verbal). As well, two thirds of all first responders have no training in communicating with autistic people. These barriers, as well as other communication and sensory barriers, prevent us from getting the care we need and can even lead to deadly results.

Recommendations: Community Education

• Education on autistic- and trauma-informed approaches to first responder services, medical care and other areas of life, so that we can be included and have the access to keep ourselves healthy and safe.
• ALL community education programs MUST BE informed by autistic educators and overseen by government and autistic self-advocacy organizations, NOT autism service organizations or charities.

We are blogging our report and recommendations to the Government of Canada, by section. Below is our policy reform overview and conclusion to the report.

Full report: A4A National Policy Report & Recommendations, 2019

Reforming how autism policy is made
As end-users of services, autistic people are the major stakeholders in all autism policy. We must be consulted nationally. Our government also must consult with inclusion experts and other disability organizations within and outside of Canada to understand new models that value inclusion.

We are asking the Government to craft policy that is informed by real inclusion experts, globally, who are making access happen.

Oversight in Autism Services
It is crucial to have adequate oversight of funded “autism service” organizations and charities to detect conflicts of interest, misuse of funds, sweetheart deals, pork barrel and service monopolies–as well as to assess the relevance, utility and fiscal responsibility of the programs our government is funding.

Unfortunately, some organizations have profited from attaching the words “autism” or “children” to their brand as a way to avoid the type of scrutiny we expect of other businesses. Let’s put a stop to it.

We are asking for financial audits of every autism service organization receiving government funding, as well as reviews of how previous federal funding was undertaken, both for transparency and to learn from past mistakes (e.g., where bidding/RFPs were wrongly bypassed and project decisions made based on weak industry data).

Start using good data
It’s ….a problem when governments give hundreds of millions of dollars to “autism service” projects without robust demographic data about the needs of the targeted population. It’s also a reflection of an antiquated, patronizing approach where non-disabled people make decisions that impact our lives based on tiny selected samples and random theories about how our minds work. That approach doesn’t solve problems; in fact, it only profits when the problems aren’t solved.

Let’s solve problems instead. Have the government collect its own data, using multiple databases (or a broad platform like a Census) to collect demographic information and determine gaps in service, areas of need and the (in)efficacy of existing approaches–as they develop new and creative approaches that are also built around data… the data being case studies and pilots from other jurisdictions who have had successes using new and novel approaches.

De-silo autism services: Create a National Disability Strategy
Federal autism policy is currently administratively siloed in the Health Ministry, kept apart from other disability policy. When we asked about this, we were told “that’s the way it has to be.” Not sure what that means, but it is a very poor decision that should be reversed.

Canada deserves robust accessibility legislation that includes autistic people. We are asking the government to begin to include autistic Canadians in its disability policies, across portfolios–and to do a serious audit of autism service providers and how they have gained government contracts–in order to reform that system. We are also asking the government to meet with autistic self-advocacy groups to hear our ideas and discuss our resources and policy recommendations.

By keeping autism policy silo’d away from other disabilities, policymakers have created a false impression that autistic people’s fundamental needs are different from other disabled people. They’re not.

We all need access, human rights, dignity and self-determination in housing, employment, education and health care. Many specific issues, such as communication rights and access for non-verbal people, also apply across disabilities. Autistic self-advocacy groups, universally, identify with the broader disability self-advocacy movement. National policy should reflect that.
Opposing the CASDA Blueprint
We are disappointed to see that a non-autistic coalition called the Canadian Autism Spectrum Disorder Association (CASDA) is calling on policymakers to support its blueprint for a “National Autism Strategy” and that some politicians have endorsed this blueprint.

CASDA’s plan is opposed by ALL autistic self-advocacy organizations nationally, including all provincial/territorial chapters of Autistics for Autistics, as well as all provincial/territorial chapters of Autistics United Canada and in Ontario by London Autistics Standing Together. Also, the parent-led advocacy groups Autistic Advocacy Ontario and the Ontario Disability Coalition support our statement against CASDA’s Blueprint, along with other individuals and groups within the autistic community and disability rights movement in Canada.

A National Autism Strategy led by CASDA would maintain the current broken system of autism services in Canada, where providers oversee wasteful projects that reflect outdated approaches, are not based on robust data and do not meaningfully engage the community.

In fact, CASDA’s multi-million dollar “strategy” is based on a “needs” survey in which autistic people made up less than 5 per cent of survey participants!! CASDA’s strategy meets the needs of service organizations to stay afloat; nothing more.

A working strategy for autism policy would involve critically examining the failures of the current service model; integrating autism as a disability within all disability policy; and consulting with disability self-advocacy groups.

Outside regulation for ABA
We have grave concerns over the suggestion that BCBAs strike a “self-regulatory body” to keep an eye on other BCBAs. This is equivalent to the foxes guarding the henhouse, in our view. The profession of ABA doesn’t just ignore abusive practices among its own members–it endorses them. For example, the Judge Rotenberg Centre, an ABA-designed- and-run centre, has been using shock torture on autistic and IDD people, a practice which has now been banned by the FDA and is classified as torture by United Nations watchdogs. Yet the Association for Behavior Analysis International (ABAI) decided to feature the Judge Rotenberg Center (JRC) at their 2019 annual conference. As the Autistic Self-Advocacy Network writes:

“ABAI’s decision to give JRC a platform at their conference reflects a continued pattern of complicity in the torture of the very population that they claim to serve. Furthermore, the JRC’s presentation at this conference specifically focuses on the ‘merits’ of the electric shock device. This means that ABAI is more than complicit in the abuse taking place at the JRC: they are actively endorsing these practices.”

Any new regulatory bodies for ABA should be completely independent and arms-length from the industry, with no members of the industry represented in any advisory or decision-making capacity. Like other autism pseudoscience, ABA needs to be strictly reviewed by our government through an independent oversight body to regulate and stop abusive practices.

Recommendations: Policymaking

• A National Disability Strategy. Federal government meets with disability self-advocacy groups, including autistic-led groups, to plan the National Disability Strategy with self-advocates as lead advisors, using independently collects data and studied best practices in other jurisdictions.
• Undo the former governments’ silo-ing of “autism services” into a single portfolio. Integrate the needs and interests of autistic people into multiple, relevant portfolios.
• Follow the lead of Scotland, who has made it law that autistic people be consulted when the Government crafts autism policy, in perpetuity.
• Financial auditing and oversight of all organizations offering “autism services” to prevent price-gouging, monopoly, pseudoscience and unsustainable service models.
• Do not endorse the establishment of a “self-regulating body” of BCBAs.

Conclusion
We all know that autistic people deserve better than the policies Canada has been delivering. We know that we don’t have to live segregated lives. Just because Canada has “always done things this way” doesn’t mean it has to. There are better ways and best practices elsewhere that our federal government can learn from. By setting inclusion as the standard, the norm, our government can begin to move Canadian autism services into the 21st century.

We are asking the Government of Canada to start now.

Summary from our National Policy Report and Recommendations

Full report: A4A National Policy Report & Recommendations, 2019

Our Vision, by 2022:

• A Communication Charter of Rights for non-verbal and semi-verbal individuals, for fair access and accommodations in all aspects of Canadian life, including specific educational mandates for teachers, health care providers and first responders.
• Community inclusion for autistic toddlers and preschoolers. Ban segregated IBI “behaviour mills.” Include autistic preschoolers in everyday life and the world of play with their peers.
•  Inclusion in schools for autistic children. Meaningfully engage universal design experts to share best practices and models. Incentivize their use across Canada, with the goal of phasing out segregated classrooms.
• Independent supported living (ISL) for autistic and/or IDD adults, with priority government funding to existing ISL projects and new ideas. A government commitment not to fund new segregated housing projects.
• Employment access for autistic adults. Train employers on making their interview processes and workplaces accessible, based on models (e.g., Microsoft). Close all sheltered workshops. Focus on training or employing autistic people in all career fields and not just jobs that stereotypically employ autistic people (e.g., IT and banking).
• Community education about autistic communication/AAC and accessibility, developed with autistic self-advocates as project leaders. Launch programs for: First Responders; medical professionals; teachers; transit workers; and others.
• Independent financial audit and service evaluation of all autism-related services, charities, and programs that receive government funding. Root out the bad players and create better systems of sustainability and accountability.
• An autistic “census”, either creating a category in the existing census or through community consultations to determine our needs. Government gathers its own data (not relying on provider “data”) to make informed funding decisions.

The following statement is supported by all provincial/territorial chapters of Autistics for Autistics, as well as all provincial/territorial chapters of Autistics United Canada and in Ontario by London Autistics Standing Together. In addition, the parent-led advocacy groups Autistic Advocacy Ontario and the Ontario Disability Coalition support our statement, along with other individuals and groups within the autistic community and disability rights movement in Canada.

Canada’s national autistic self-advocacy organizations are united in opposing CASDA’s “National Autism Strategy”.

Background
We are disappointed to see that a non-autistic coalition called the Canadian Autism Spectrum Disorder Association (CASDA) is calling on candidates to support its blueprint for a “National Autism Strategy,” written in coalition with Autism Speaks, and that some politicians have endorsed this blueprint.

Why We Oppose the Plan
We oppose CASDA’s blueprint for several reasons:

1. By keeping autism policy silo’d away from other disabilities, CASDA’s plan creates a false impression that autistic people’s fundamental needs are different from other disabled people. They’re not. We all need access, human rights, dignity and self-determination. Many specific issues, such as communication rights and access for non-verbal people, also apply across disabilities.
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2. An Autism Strategy led by CASDA and Autism Speaks would maintain the current broken system of autism services in Canada, where providers oversee wasteful projects that reflect outdated approaches and do not meaningfully engage the community. In fact, CASDA’s multi-million dollar strategy is based on a “needs” survey in which autistic people made up just 4 percent of survey participants!!
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3. It is time for a culture shift in federal autism policy. The Government of Canada has been giving billions in tax dollars to selected service agencies and charities like Autism Speaks with no real data to justify spending, no transparency and net negative results. The money, quite simply, has been going down a hole.
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4.  While provincial and local governments are busy consulting with autistic self-advocacy groups, the federal government has not!! To make informed policy they need to consult our organizations, which represent thousands of members.

Autistics should be included in disability policy
We call on federal policymakers to focus on access, human rights, and equity for all disabled people, including autistics–and to include us in all disablity-related policymaking.

We have a Blueprint for Inclusion, also outlined in A4A’s Report to the Federal Government. In this alternative, the federal government would:

•     Meet with disability self-advocacy groups, including autistic-led groups, whenever developing disability policy.
•     Independently collects data and study best practices in other jurisdictions (NOT “data” by providers with a financial stake).
•     Audits all autism-related service providers and give priority to those that support equity and self-determination—not segregation.
•     De-silo autism services and fully integrate services for autistic people in the same portfolios that address other disabilities (such as employment and housing).

The Time is Now
Canada deserves robust accessibility legislation that includes autistic people. We are asking the government to begin to include autistic Canadians in its disability policies, across portfolios–and to do a serious audit of autism service providers and how they have gained government contracts, in order to reform that system.

Autistic Canadians are in crisis. Our suicide rate is 9 times higher than the rest of the population–and it isn’t because of “living with autism”. It is because autistic and IDD people in Canada face discrimination, stigma, unemployment, underhousing and poverty. That stigma is firmly embedded in the “autism services and charities” sector, which continues to support a service model that segregates autistic/ IDD Canadians. That sector, including CASDA, should no longer be entrusted with crafting “strategies” instead of our government choosing sustainable policy options.

A real strategy for autism policy involves critically examining the failures of the current service model; integrating autism as a disability within all disability policy; and consulting with our groups. We hope that a new government will be wise enough to take these steps.

 This is the speech that A4A co-founder Anne Borden gave at the Annual General Meeting of Arch Disability Law on Wednesday evening. A4A is grateful to be included in this event and we look forward to working with Arch and others in this important movement!

Anne: Thank you so much for inviting me. Thank you also to Chris, Debbie and Monique, our ASL interpreters. It’s an honour to be here with the other panelists!

I’m Anne Borden, a co-founder and member of the Executive of Autistics for Autistics, a disability self-advocacy organization. Autistics for Autistics–also known as A4A–advocates provincially in Ontario and New Brunswick, as well as nationally. We are part of the national Autistic Advocates Coalition of Canada and an international affiliate of the Autistic Self Advocacy Network–ASAN.

Since our founding in 2017, we have built a membership of autistics and allies around 4 core issues: school inclusion; housing and independent supported living; employment access; and accessible health care for our community.

Our community faces extreme prejudice, stigma and segregation in school, housing and life. It is perpetuated in part by the main childhood therapy system in Ontario-Applied Behaviour Analytics or ABA, which is based on a segregation model. Autistic toddlers and preschoolers are removed from their home communities and sent to segregated ABA therapy centres to supposedly learn “life skills“–but because they are so segregated, by the time they enter school neither they nor their peers know anything about each other or how to relate to one another…and so many end up segregated again into special education.

According to a recent report by the Ontario Human Rights Commission, the special education system in Ontario has not changed meaningfully in 40 years. Restraint and isolation rooms are still used and children are often neglected or abused in these classrooms. There is no universally mandated or systemized tracking of restraint or isolation, no cameras in classrooms and no real accountability around the use of restraint and seclusion.

From the segregated classroom, many autistic youth graduate into a segregated life, marginalized in group homes without opportunities for paid jobs, post-secondary education or independent supported living. Our suicide rate is nine times higher than non-autistic people and I believe this is in large part because we are so stigmatized and segregated.

Poverty is the norm for autistic people in Ontario. Housing insecurity is a major issue as is abuse in group homes, which, like the special ed classroom are not being regulated in this province. Indeed, there are no provincially mandated, uniform means for documenting use of isolation or restraint in group homes or even a proper universal vetting system for workers in group homes or private special-ed or day program settings.

In Ontario, around 80% of government housing funds for IDD individuals go towards segregated group homes instead of independent supported living, despite evidence that independent living is a better approach and despite voices from the community asking for it. Neither the capacity nor the voices of IDD Canadians are being honoured under the current system.

Autistics of Colour face racialized discrimination, disproportionately targeted for disciplinary actions in school and the juvenile justice system. As well, police violence against autistics, especially autistics of colour, is a major health and safety issue. We all know what has happened when a Black man has reached for his wallet when encountering police. Now imagine he is also flapping, to calm himself. A natural way of moving and being in the world: criminalized due to bias and ignorance. Two-thirds of police officers report they have received no training in communicating with autistic people. Officers need to be trained in trauma-informed, disability informed responses. Autistic and disabled advocates know how to do this, and have the resources, but governments too often instead rely on charities that are out of touch with our community needs.

25-30 percent of autistic people are non-verbal or semi-verbal and need access to assistive communication technologies (AAC), yet many are denied access for years or even their whole life. Some behaviour-based therapies actively discourage the use of AAC in a vain attempt to “force” speech—other times, schools and teachers are just not educated about how to interact with AAC users, since there is no training. The average amount of time a non-verbal child has to wait for AAC access in Ontario is 2 and a half years. That being the average, it means many more have to wait even longer than that for communication access. Also, because many people do not know the basics of how to communicate with a person who is using AAC, AAC users also face barriers to access to health care, employment and other areas of life.

We may have any other co-occurring disabilities as well; the most common one is epilepsy. Many also suffer from anxiety and PTSD due to abusive therapies they had as children. Our bodies move differently, we have sensory considerations and we communicate differently; unfortunately, all of these are still seen by the mainstream autism service agencies in Ontario as so-called deficits to try and “fix,” rather than disabilities to accommodate. Over the next few months you will hear a lot of people talking about the need for a “National Autism Strategy.” Autistic self-advocates nationally are not advocating for this strategy, which keeps autism silo’d from other disabilities. We are advocating for a National Disability Strategy, inclusive of all disability, with disabled self-advocates as leaders in assessing approaches and building a plan that works.

Autistic self-advocates in Canada exist as a group, in part, to name a terrible truth: that billions of tax dollars have been spent on “autism” policies without any consultation from autistic people or even any meaningful research and data on our needs.  For any real progress, we need a complete culture shift around autism services in Ontario, towards governments drafting policies that respect our right to self-advocacy and honour our access needs.

But change is coming. Here is some good news: although until this year autistic self advocates were never included in consultations with the provincial government, that has changed. In Ontario, the government has put two autistic people on its autism policy Community Consultation panels. Having two autistic people, which is 10% of the community panel on autism, is actually a really big deal. It has set a precedent and I hope that soon we will have more than just two self-advocates on the panels. I think there is a light at the end of the tunnel, but still a long way to go. We’re going to keep moving ahead and we stand in solidarity with all other disability groups as we move forward together. Nothing about us without us.

Thanks for listening.