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Disability Day of Mourning Vigil in Toronto: March 1

On March 1, 2018, A4A will be hosting Toronto’s Disability Day of Mourning Vigil.

Date: March 1, 2018
Time: 3:00pm-5:00 pm
Location: Ryerson Campus, Oakham House (1st floor)
63 Gould Street, Toronto

Background: The Disability Day of Mourning is in honour of disabled people who were murdered by their parents or caregivers. It was founded in 2012 by Zoe Gross of the Autistic Self Advocacy Network and now happens in cities and towns across the world. This is the first year a vigil will be held in Toronto.

About the event: Following a brief introduction, members will be reading the names of victims, followed by a moment of silence. Information about the issues and how to get involved will also be available onsite.

Why it’s so important: Our lives have as much value as any other. Yet the murderers of autistic and/or disabled people are routinely given lighter sentences by the criminal justice system. Lighter sentences not only dishonour the dead, they also encourage more abuse and more murders. In fact, research shows that lighter sentences lead to copycat crimes.

Media portrayals of these murders as “mercy killings” or reports that empathize with the murderer or blame autism for their acts create a chilling environment where violence is seen as justified. Parents and other caregivers often justify their abuse by blaming autism or another disability: blaming the victim rather than the perpetrator.

There is only one victim in a filicide: the child. All murderers should be held equally accountable for their actions.

On March 1, we honour the memory of our disabled and autistic family who were murdered. They should be here with us and we mourn them deeply. As we grieve, we also fight for judicial reform, true equality for the disabled and justice, in their name.

If you would like to volunteer at the event or want more information/seek an interview, please contact us. Thanks.

Wasted Opportunity, Wasted Money: The 2018 Ontario Autism Program

I


n 2017, the Ontario Association for Behaviour Analysis hired Pathway Group to lobby eight Ministries at Queen’s Park. Today, under the new $500 million government autism plan (Ontario Autism Program), only ABA is allowed in schools –and therapists who receive public funding (including SLPs and OTs) now must become ABA certified.

Non-ABA stakeholders, especially #actuallyautistic voices, were consistently shut out of the OAP consultation process. Shockingly, the half-billion dollar plan was developed without any input from the autistic community.

The OAP does not serve the needs of the community it claims to serve. With the entire budget earmarked for ABA and none for useful services, it should immediately be scrapped by the new government. This wholesale conversion towards one preferred provider is a waste of money and opportunity. ABA is based on neither science nor evidence: it is an outmoded, cruel form of behaviourism that autistics, researchers and many families oppose.

Recommendations

  1. The OAP should be replaced by a new, leaner and more effective plan reflecting science and the input of the population it is supposed to serve – autistic Ontarians.
  2. The Ministry of Children and Youth Services should no longer be the authority over autism services by having control of this portfolio. Services to autistic adults have been systematically denied as a result of this misdirected authority.
  3. The new government must take responsibility and consult with autistic self-advocates such as Autistics for Autistics (A4A)and Canadian Autistics United, as well as experts in disability services and accommodations.

What went wrong
How did the government get it so wrong? One clue can be found in a bureaucratic misstep: placing management of services to autistics under the authority of the Ministry of Child and Youth Services. There are tens of thousands of autistic adults in Ontario, yet the current OAP contains not one sentence about the needs of autistic adults.

Another clue is the relationship between ABA professional organizations and the advising process within the government. Several members of the Advisory Committee for the current OAP are practitioners/trainers in ABA. Despite repeated efforts from autistics, disability advocates and non-ABA service providers to be meaningfully included in consultation, these stakeholder groups were excluded from the Liberals’ OAP advisory process.

These issues came up when Ontario Child and Youth Services Minister Coteau held two Tele-Town Halls about the Ontario Autism Program (OAP) earlier this month. Concerned parents asked the Minister why autistic self-advocates were not consulted during the development of the program and why ABA has supplanted all previous existing services available to autistic children. Minister Coteau did not answer these questions directly, but he reiterated that the OAP budget will be solely earmarked for ABA-brand providers and training programs.

Today, we have one industry dominating the entire autistic service system in our province, with useful programs and services having been stripped away in the process. The half-billion dollar question is: why?

How ABA establishes market dominance
Like other conditions and disabilities, the reality of being autistic in Ontario is best understood by consulting with the community: autistic children and adults. Yet when the Liberals sought to develop a program to serve autistics, they rebuffed our efforts to connect. 

Other stakeholders report the same experience, including a coalition of non-ABA providers of services and accommodations (who as government contractors are not allowed to make public statements).

This situation is not unique to Ontario. Globally, some industries have been accused of attempting to squeeze out their competition, using a 3-pronged approach:

  1. Positioning themselves as the “only experts” on autism;
  2. Making unscientific claims that appeal to emotions; and
  3. Requiring other professionals to be absorbed into their system in order to receive funding.

Let’s look at the three methods below.

1. The “only experts” strategy

Sometimes providers will position themselves as the only experts on autism and state that ABA is “the only evidence-based practice”. Through this strategy, governments may be encouraged to stonewall other stakeholders…legitimate voices suddenly portrayed as illegitimate in what looks like a sales pitch.

The claim that ABA-certified professionals are “the only experts” has the potential to undermine confidence in their service competitors and give ABA a greater market share. There isn’t validity to the “only evidenced-based service” soundbyte — but repeated often enough, people begin to believe it. To this end, we can’t help but see it as marketing in its basest form.

ABA’s founder, O. Ivor Lovaas, was also the founder of a brutal “gay conversion” program, which claimed to stop young people from being gay, now illegal for children under 18 in Ontario because it violates human rights. Far from being experts on autism, some providers fundamentally misunderstand autism and basic neurology, with practices that attempt to “convert” autistics to appear neurotypical at any cost. Like the gay conversion therapy designed by the founder of ABA, these practices run counter to Canadian values and human rights.

As 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, “–as autistic people have long argued should be the case–the onus is on the [parents and teachers] to work harder to understand and communicate with their child, rather than to try to ‘fix’ them.”

2. Unscientific claims
One of the core claims of the ABA marketing blitz is that it is “the only evidence-based” approach to autism. In reality, the research into ABA is very much under scrutiny and falling out of favour in many jurisdictions. As Michelle Dawson writes: “‘Scientifically proven’ and ‘medically necessary’ are terms that encompass the assumption that the scientific and medical ethics have been accounted for. In autism, these terms are applied to a treatment whose ethics remain unexamined.”

ABA research has been historically plagued by poor methodology. As neuroscientist Laurent Montrant of the University of Montreal writes in his study, its “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.” (emphasis added). This is due in part to newer research in the neuroscience field, knowledge that demonstrates a fundamental incompatibility of the Behaviourist approach to autistic lives and realities.

Montrant notes: “There is currently no scientific, ethical, or societal justification” for Behaviourist early interventions.

Non-Behaviourist approaches have been studied and these rigorous studies demonstrate that autism acceptance (the opposite of ABA) leads to the best outcomes for autistics. In fact, there is a broad range of new research into better ways than ABA. It does not appear that this research was consulted when developing the OAP.

While behaviourists tend to focus on autism as a set of behaviours to modify, neurology tells a different story and the medical community concurs that autism is biologically wired. ABA’s approach to neurodiversity simply does not reflect what we know about the human brain; for example, much of the literature of ABA portrays autistics as flawed versions of normal — then it offers a supposed fix. Parents and governments may take the bait because ABA proponents play on emotions (especially fear) to sell their product.

ABA providers may promise to make an autistic child “nearly indistinguishable” from peers. They may tell parents that there is only a tiny window of time in a child’s life to intervene, and that only intensive/expensive Behaviourism will help their child. Finally, they may use the tired, discriminatory trope of “pay now or pay later” to suggest that children who undergo ABA have better outcomes. There is no evidence to support those claims.

3. Absorbing other professionals
Under the new OAP, non-ABA providers will be required to engage in expensive professional development programs to become BCBA-certified therapists — or risk losing their funding. Personal support workers who had integrated successfully into schools with their students will be asked to leave their positions if they don’t become ABA therapists.Included in the mandate are OTs, PTs, and Speech Language Pathologists, none of whom have a need (or a desire) to be trained in an antiquated form of Behaviourism.

Under the OAP, thousands of Ontario professionals who are accredited and respected in their fields have been knocked down the rungs as “illegitimate” if they do not have an expensive BCBA certification. Requiring BCBA certification does not help autistic people: it only brings business to certifying bodies and attempts to position the ABA brand as the perceived gold standard in autism services.

Who profits or benefits from unnecessary accreditation? How could provincial money be better appropriated? And why did our government gamble on a single approach that autistic people don’t want? Who is the winner — and who are the losers — in this gamble?

What can be done

The new Government needs to put the brakes on the OAP now. Advocates are mobilizing across interest-groups to say no to the program. The OAP represents wasted money and opportunities — and our coalitions, united, will not stand for it.

We are personally and intimately aware of the pain, anxiety and PTSD that autistic children and adults suffer due to Behaviourist therapies. We oppose ABA in any form. As self-advocates, we support useful supports, services, programs and accommodations — not so-called cures or therapies.

We are far from alone in this perspective. Autistic self-advocates and allies who support progressive approaches are an interest group that is growing every day.

It is misguided to place “autism services” under the authority of the Child and Youth Ministry, when tens of thousands of autistic young adults and adults in Ontario are also integral to any true service model. Other groups such as racialized and LGBT communities, as well as many disabled communities, have services by and for all ages, shapes, sizes, and geographic locations led by their own people. So should we.
Autistics are crucial to developing effective policy that responds to needs and respects human rights.

Our province deserves better than the current OAC. Together with our allies in the community and government, we will change the culture of autism policy at Queen’s Park to one that is fair, humane and equitable — reflecting the needs, the voice and the vision of our community.

If you are interested in learning more, please read more About us. If you would like to join our efforts, find us on Facebook or Contact us.

 

 

Autism “Cure” Scams in Ontario: A Report and Call to Action

All across the province of Ontario, businesses are making money off of autism “cures” 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 against invasive autism “cures” —and that it is nearly impossible even to censure MDs who prescribe major drugs for off-label use related to autism. 

Further, while children are not able to provide informed consent for these treatments, the mainstream autism organizations find it acceptable to list them on their websites —and parents continue to patronize these companies.

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 “treatments”. Prescriptions are given for the use of antivirals, antifungals, long-term antibiotics, SSRIs and other medications as part of an autism “cure” 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.”

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 cures” 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 “cures” 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 and acting on these scams is inconsistent and vague. As long as there appears to be so little regulatory power over naturopaths or their products in our province, they will continue to prescribe “cures”. We would also like to see the Ontario government develop a clearer path for reporting pseudoscience to regulators and post it on their website.

We ask that the College of Physicians and Surgeons (the governing body of MDs in Ontario) be proactive in investigating medical fraud, misuse of prescription medications and all autism “cure” or “DAN!” programs run by Ontario physicians.

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. If you are not part of the solution, you are a part of the problem.

Conclusion
There is no “cure” for autism and there never will be — nor should there be any effort made towards finding one. 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, “treatments” or “behaviour therapy” has no place in an inclusive society. In addition to their impact on the direct victims, cure schemes also 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.

Guest post: Understanding the Difference Between “Autism Organizations” and “Autistic Organizations”

by Alex Kronstein

Okay. I can’t be silent about this anymore.

The Senate of Canada is having a major Autism Awareness Day today, October 25, on Parliament Hill.

I’ve spoken about some autism issues in Canada before, but I haven’t said anything about one particularly big one that went down this year.

Until now.

This article was published on September 28. I only just noticed it the other day.

At the beginning of the article, it says: “Canadian families coping with the challenges of caring for autistic children would really like to see federal politicians get their act together. It would also help if all factions within the autism community started working toward a common cause.”

Okay, first of all, there are actually TWO communities at play here: the autism community, and the AUTISTIC community. There is a big difference between the two. Michelle Swan describes the difference very well right here, so I won’t repeat it. Keep reading….I’ll have more on this in a minute.

Further down, we find this: “Coincidence or not, another group – Autism Canada – withdrew support from CASDA and the partnership, claiming it lacked financial transparency and measurable deliverables. Instead, Autism Canada is now working with the Liberal Party’s national policy committee on a report to federal ministers to create a national autism program – doubtless with a distinctly Liberal stamp.”

Now I’m no fan of Autism Canada, but they do raise a valid point about the lack of financial transparency among the Canadian Autism Partnership Project. Indeed, CAPP’s financial statements haven’t been made public. And seeing how the intent of the project was to deliver a report to the federal government, it only makes sense to make the financial statements publicly available.

And “distinctly Liberal stamp”? What the hell does that even mean?

As for why I don’t like Autism Canada: they are deeply entrenched in the pathology paradigm, and under the “Treatments / Interventions / Therapies” section of their website, they list a whole bunch of quack “treatments” for autism, including homeopathy, the Son-Rise program, nutraceuticals, various diets, and other questionable ideas.

Oh, and under the section on Diets, there’s some info on Bernie Rimland, including this little gem: “Dr. Rimland, founder of the Autism Research Institute and pioneer of biomedical autism treatments, lost his battle to caner on November 21, 2006. His crusade for autism was relentless. He will be dearly missed, but his legacy to understand and implement biomedical treatments for autism will live on forever.”

I don’t think many Autistic adults miss Rimland. He was one of the worst curebies around.

Then I read this: “Autism Canada does not endorse treatments, interventions and therapies but lists them so people can make an informed choice.” …They don’t endorse homeopathy, the Son-Rise method, questionable diets, etc? Considering the uncritical postings I read on their site, not to mention their praise of Bernie Rimland, I would very much disagree (Search Autism Canada’s website for yourself if you’re so inclined. I’m not linking to it here.)

Getting back to the iPolitics piece. Further down, I read this: “Cynthia Carroll, CASDA’s executive director…..says Autism Canada’s decision to withdraw deflects from the common goals of all parties.

“Who lost out was the families,” she says.

“We really need to be saying to the government, Work with all national agencies on the same agenda, to make it happen for individuals and families,” she says.

Okay, here’s the thing. The idea that autism groups have a “common goal” is bullshit. Because it’s not true.

I can point to two fairly new organizations that have a very different goal than most of the organizations CAPP consulted with. Now these were founded after CAPP wrapped up, but rest assured their goals are extremely different from the Canadian Autism Spectrum Disorders Alliance, Autism Canada, and especially Autism Speaks Canada.

They are…..

Canadian Autistics United

and A4A Ontario

Canadian Autistics United began when the Vancouver and Winnipeg chapters of the Autistic Self-Advocacy Network were rebranded. It is an independent Canadian-run organization run by and for Autistic people, something that has been desperately lacking in Canada for far too long. I believe they will eventually get more chapters, and I have expressed an interest in starting a chapter in Halifax. Keep an eye on this group.

A4A, Autistics for Autistics, is the first Autistic self-advocacy group in Ontario. They support reform to Ontario’s approach to autism funding and services. I am a strong supporter of this group. You can check them out at www.a4aontario.com.

Another smaller group is London Autistics Standing Together (LAST) in London, Ontario. Learn more about them at www.londonautistics.wordpress.com.

Getting back to why autism groups don’t have a common goal…..here’s a perfect example. Autism Canada and Autism Speaks Canada both support ABA. CAU, A4A and LAST do not.

Need more specifics?

One of the key goals of CAPP was to “enhance practice related to early identification of ASD”.

It also states “further activity to address this complex issue and creating standardized ASD screening and identification guidelines will allow for improved access to intervention and support at the earliest possible time in a child’s developmental track, opening up the potential for earlier intervention and positive impact on the developmental trajectory for children identified with ASD.”

So what is this supposed to mean? More funding for ABA?

The CAPP Business Plan doesn’t say exactly what that’s supposed to mean.

I highly recommend checking out Appendix E of the business plan, entitled “Sample Descriptions of How Two Priority Complex Issues will be Addressed”. It describes how they’ll address the issues “Enhancing Practice Related to Early Identification of ASD” and “Enhancing Employment Opportunities in Autism Spectrum Disorder””

These two priority issue descriptions are chock-full of corporate double-speak and gibberish that it’s nearly impossible to comprehend what they’re trying to say.

Another thing: Autism Speaks Canada is a supporter of that wretched MSSNG program, which all of us Autistics despise. For those of you who may not know, MSSNG is a collaborative genome sequencing project between Autism Speaks and Google, with the purpose of finding a genetic cause for autism. As The Caffeinated Autistic says:

“There is a huge problem with not only the research being done (seizures are still not autism, no matter how hard you try to make them so), but the ethics of making 10,000 autistic people’s genomes available to researchers without much thought to the consent of the autistic people in question.”

And of course, Autism Speaks Canada has exactly zero Autistic people on its board of directors or in leadership positions. (What else is new?)

Oh yes…and unlike their American counterpart, they still have the word cure in their mission statement!! (That’s not a defence of the main organization, by the way.)

Want proof? Taken straight from their website: “At Autism Speaks Canada, our mission is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bring hope to all who deal with the hardships of this disorder.

“Autism Speaks Canada aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.”

Jesus Christ on a stick, Autism Speaks Canada is just as much a pile of dog leftovers as the American mothership! (Thought that might be unfair to dogs.)

Back to the original article, then we get this.

“Mike Lake, whose autistic son Jaden is now 21, considered his motion a no-brainer, though he agrees that ‘it’s next to impossible to get unanimity in the autism community.'”

You’re right, Mike. It IS impossible to get unanimity in the autism community.

Because, as I already said, there’s the AUTISM community and the AUTISTIC community.

And “unanimity”? Well, as Nick Walker once said in response to Autism Speaks’ 2015 Call for Unity: “What the vulture calls unity, the giraffe calls getting eaten.”

Bang. On.

The same thing can be applied to any situation where the neurotypical majority is asking for “unity” in relation to autism issues.

Lake also says that what drives all families “is getting their kids much-needed help through school and into meaningful employment and supportive housing.”

Oh Mike. If you only knew.

That’s NOT what drives all families.

More on this in a moment.

There’s a fair argument in the article for more housing options for Autistic adults. This is commendable; Autistic adults deserve to live independently, with any supports they need. No one can argue with this.

As it says, “many Canadians with autism or other disabilities can’t find a place to live. More than a million have trouble finding affordable accommodation, the Committee on the Rights of Persons with Disabilities reports. A guarantee of accessible housing for them, it said, has to be included under the federal government’s National Housing Strategy.”

Again, this is perhaps one of the strongest parts of the CAPP plan.

But then there are several comments from parents of Autistic adults crying about what will happen to their Autistic children when they (the parents) are gone.

Well folks, now the gloves are coming off.

It is true. For many Autistic people, no one will be there for them when their parents are gone.

But that’s the result of their parents’ actions.

Here’s an extremely powerful piece from Kassiane Asasumasu on this topic. If it makes you feel uncomfortable, then you should take a look at yourself and think about that.

I should point out that it’s specifically directed at parents who aren’t supporting their children. Nonetheless, it’s extremely important, because it does raise an important point: when people talk about “services for families”, what they really mean is services for parents. And that’s a major part of why Autistic adults don’t get much support, because the system is so heavily parent-centered.

Whew. That’s a lot.

So as you can see, there will never be “unanimity in the autism community” as long as the neurotypical majority continues to speak for us and over us.

But that’s changing.

With A4A Ontario, Canadian Autistics United and hopefully other groups sprouting up, the day will come when Actually Autistic people will be taking the lead on all issues that affect our lives.

Alex Kronstein is an Autistic activist and filmmaker from Dartmouth, Nova Scotia. He is the host of the podcast The Neurodivecast.

 

Autistic and Aware. Knowing our Rights

October is Autism Awareness Month in Canada. So… people put a ribbon in their profile pictures and donate to organizations they think will help autistics. The problem is, most of these organizations only marginalize us, even as they claim to speak for us.

This October, we’d like to change the tone of the conversation and promote awareness that isn’t from a non-autistic parent, nor a service provider or researcher, but rather from our own lived experiences and our goal of greater freedom for autistics everywhere.

As autistic self-advocates, we are AWARE:

  • that we have the right to fair education
  • that we deserve a voice in our treatment decisions (at every age)
  • that in our deepest moments of crisis, we need emergency responses workers who are educated about autism
  • that housing is a right for autistics —and for all people
  • that more employment opportunities could be available to autistics if the Province invests wisely in employer education and recruitment programs
  • 
that policymakers should consult autistics when developing programs, yet seldom do
  • 
that parent-led advocacy groups need to change: to welcome autistic leadership, rather than diminishing or tokenizing our roles
  • that #actuallyautistic researchers bring unique value to the field of autism research and the field needs to encourage more autistic researchers
  • that autism intersects with other identities such as queerness, transness, race, poverty, and other disabilities
  • that we have the right to freedom from violence and discrimination, both individual and institutional
  • that disability rights are human rights, and our rights are enshrined in Canada’s Charter of Rights and Freedoms

Autistic. Aware. Proud. Join us.