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10 Myths You Will Hear at Thursday’s ABA Rally

On Thursday, March 7th, some Ontario parents and ABA providers will gather at Queen’s Park to express their concerns about autism funding in our province. While many parents will be attending with a variety of concerns, the main organizers of this rally are a pro-ABA lobby and the main speakers will be promoting the old Ontario plan, which only funded ABA.

A gathering this large could be a chance to present differing approaches and ideas about positive changes to autism policy. Our government recognizes the need for change and the conversation is long overdue. But change is not on the agenda of the rally organizers. Up on the stage, it’s just another rally for ABA.

We will be there on the sidewalks, sharing our views with those who want to discuss. We are also sharing here some of the myths about ABA you may hear at the rally.

Myth 1:
“My child can’t speak, so I am his voice.”
Fact: Everyone communicates. It’s a parent’s job to help their child communicate with every tool available. Ask us about AAC!

Myth 2: “Without IBI, my child could never: dress/bathe/go to school…”
Fact: Autistic children learn life skills with a range of methods. ABA is not the only way. In the UK, ABA is not recognized as valid by the NHS, yet children learn life skills.

Myth 3: “Without more ABA, something terrible is going to happen, like a child wandering away from school, being hurt or killed by a teacher.”
Fact: Children are safe at schools without ABA. What keeps kids safe are safety measures and inclusion, as well as teacher training in de-escalation, not ABA.

Myth 4: “There are two kinds of autism, high-functioning and low-functioning.”
Fact: The research and expert community no longer break autism up that way: instead they recognize a range of service needs along a spectrum through life.

Myth 5: “Without ABA, autistic children can’t learn to communicate.”
Fact: AAC (communication tools for nonspeaking autistics), have been developed by tech teams who have no connection to ABA. AAC is taught by a range of providers who do not require ABA training.

Myth 6: “ABA and IBI are life-saving treatment, like chemotherapy.”
Fact: Autism is not a life-threatening illness and ABA is not a medical treatment. The myth is also hurtful to those struggling with life-threatening diseases.

Myth 7: “Many autistic children need 40 hrs per week of therapy”
Fact: No child needs a full-time job. They need time to be kids for healthy childhood development. IBI therapists make more money the more hours they can charge for.

Myth 8: “ABA is the only evidence-based treatment. Ontario is now funding sub-clinical services.”
Fact: There are numerous evidence-based approaches and amazing non-ABA therapists providing service and helping kids every day. The ABA industry will NOT shut them out of Ontario.

Myth 9: “The schools will be over-run with autistic children, and this means trouble.”
Fact: Our schools have been in trouble for a long time. Inclusion is the answer, not more ABA.

Myth 10: “Pay now or pay later. Our kids need ABA/IBI to succeed.”
Fact: What autistic children needs most is patience, love and meaningful supports and services. Trust us. We’ve been there.

Thanks for reading! We hope you will look around our website more and learn everything you can about different approaches to autism policy. It’s time for change.

“I’d like to see a focus on inclusion”: Parents respond to the new plans for autism policy in Ontario

There are tens of thousands of families across Ontario who never accessed the former Liberal government’s autism funding (OAP) even though they would have benefited greatly from financial assistance. There are three big reasons for this:

  1. Lack of funding for diagnostic services in the old plan (OAP);
  2. Huge waitlists for services under the OAP; and
  3. Only one type of service–an outmoded one—was available under the OAP.

Now we have a new government that has promised to start fixing these barriers to service. The Progressive Conservatives’ new plan:

  1. Doubles the number of diagnostic services available;
  2. Cuts the waitlist and serves an additional 23,000 families, focusing on families earning less than $55,000, who were underserved by the former plan;
  3. Allows families a choice of service providers, not just ABA.

We wanted to get a sense of how parents are feeling, so we spoke to some of the parents who reached out to us after our statement, as well as those we’ve known for some time.

We have a connection with parents because many of them, when they find out their child is autistic, decide they would like to connect with and learn from autistic people. As one mom wrote: “As a non-autistic parent to a wonderful autistic child, one who the world would consider ‘high needs’, who uses AAC and stims and has boundless energy and the most amazing laugh I am beyond grateful to the autistic advocacy community for teaching me how to be a better parent and advocate for my child.”

We learn so much too, every day, from the parents we interact with. Here is some of what we’ve learned about how they are thinking about the new plan.

Summary
Overall, the parents we spoke to felt optimistic about the proposed policy changes in Ontario.

  • Previously, they paid out of pocket for their children’s’ services and are hopeful for a new level of choice, because the former plan (OAP) only funded ABA.
  • Some were waitlisted for diagnosis under the OAP and are very glad to see the new plan’s increase in diagnostic services.
  • Some have a family income below $55,000 and appreciate the new plan’s sliding scale approach to services.
  • Most prefer direct funding, which is in the new plan.
  • Parents of nonspeaking children are hoping that AAC will be addressed in the new plan –unlike the OAP, which did not address AAC or communication choice.
  • Some have children who are young adults, and would like to see services for young adults (which the OAP did not support).
  • Parents have many questions about what will or won’t be funded under the new plan and concerns that their needs will still be unmet under the new plan.

Positives in the new plan
Parents saw several key positives in the proposed new plan, mainly flexibility, choice and equity.

Deanne, a mom of two autistic children, one non-speaking and one speaking, had this to say: “More funding for diagnosis is great news. Also, giving parents direct funding and flexibility with respect to how it can be used is a terrific development in my opinion.”

Monica, a mom of an autistic teen, appreciates that the new plan offers services to a range of children: “My son was always deemed too ‘high functioning’ to receive funding, but he needed OT. I ended up taking OT classes at U of T Scarborough and doing it [the OT] myself.” Monica got her son into speech-language therapy, social classes and Speech Arts, all of which were helpful but she was not able to receive government support for them under the old plan.

Christine, a mom of an autistic 11 year old said: “Under the OAP, we had to pay for his therapies because they weren’t ABA. Why? These therapies were totally amazing for my son, but the OAP seemed to think there was only one way to learn to brush your teeth. Maybe the new plan will allow families to choose what’s best for them.”

Cathy, a mom of a 23 year old non-speaking FC user says: “Our province needs to fund occupational therapy that meaningfully addresses sensory and motor differences. Why not fund pro-autism approaches? I’m really concerned for the long term well-being of the generation of autistic children whose parents advocated for funded ABA.”

Kelly, a mom of a 6-year-old autistic girl, wrote: “The old plan was designed for ABA providers to make money, period. When I had the opportunity to ask Michael Coteau, former Minister of Children and Youth Services, what consultation had occurred with autistic people in the development of the plan, and why it only funded ABA, his shock at the idea of consulting with autistic people pretty much said all it needed to. I personally support providing funding directly to parents, and hope it can be used for needs other than ABA.”

Mandy, a mom of an autistic high school senior, used a different approach than ABA and also never received funding. She is glad to see that there will be less funding for ABA and hopes there will be more for alternatives. She recalled early in her son’s life when the family tried ABA: “We were told that M was ‘attention-seeking’ when they were crying, climbing on us, and generally melting down. I did not fully believe what we were told but I was brought up being told to do as I was told so I listened to those who are authority figures. We were told to take away all of M’s special toys so that they could be used later as rewards. This backfired on the therapist because M just did nothing and sat on the couch depressed and didn’t play with anything else.  We gave the toys back. It was not fair to take them away like that.

“It always felt wrong to ignore when my son was very troubled but we followed the so-called experts… Now we follow the true experts.”

Saira, who moved here from a different province, noted: “What the province had available [under the OAP] wouldn’t be useful for my daughter. I have paid out of pocket for everything.” She is anxious to see what the new program has to offer.

All parents were eager to share what they had learned from their own reading, from the therapists they chose and through their conversations with autistic people and other families. (We will compile a resource list!) These conversations revealed the true ingenuity of parents who, when faced with a system that had shut them out, found their own way. Each are hopeful that the new policy opens the door for solutions that are flexible and fair. They are also hopeful that a new program can help families of newly-diagnosed children.

“It looks like this program is going to help more poor families,” wrote Christine. “I am well aware of how easy it is to get extras when you can pay someone to advocate, and it’s not fair.” Another mum, Amelia, agreed: “The funding piece is still evolving, I hope in a way it might provide financial assistance for therapy and services for those living on ODSP or those struggling with no income.”

Questions about the new plan
Parents want to see the new plan as it evolves and hope to be consulted. There were several concerns:

  • that the idea of service choice would not truly be realized;
  • That AAC would not be funded;
  • that a new program will not acknowledge the needs of older children; and
  • that the government would backtrack on diagnostic hubs.

“I would like to know the details of the new plan,” wrote Jennifer. “I know they’re offering choice, but what services? Will [the new plan] be posted online?”

Cathy wrote: “There are waitlists for Passport funding and I know there are people with the same needs as my son who have no [Passport] funding. We see the government decided to eliminate the ABA wait list. Will they do the same with the Passport List? Will it affect the services my son receives?

“My son would like to be supported to live on his own and not be dependent on family. I think he will gradually become a bit more independent over time but this process requires very specialized support. What kind of support will there be now through Passport?”

Jeff, who paid out of pocket for a non-ABA service, wrote: “We did RDI [a developmental therapy]. The person trained us in how to do it, so it was affordable and gave us a lot of skills. It was incredibly helpful. Will the government encourage these kind of programs?”

Parents also had questions about how the program will be rolled out, as well as concerns there could be last-minute change. Kelly noted: “I would hope that the promised investments in diagnostic hubs are carried out, as this is a huge issue (we waited well over a year to see a doctor who could provide a diagnosis). Right now the details of their plan are not widely understood.”

Ideas for the new plan
Parents, together with their children, bring a lot of experience to the table in terms of evaluating services and identifying service gaps. Here are just a few of their ideas for autism services in Ontario:

Communication/AAC
All parents agreed that Augmentative and Assistive technologies (AAC) for non-speaking autistics have been under-funded in Ontario and all favoured more exploration by government into a funded AAC program.

As Deanne said: “Providing financial resources to invest in assistive tech and respite instead of ABA is most welcome. It would be a greater focus on the Assistive Devices Program. This would include more funding and incentives for SLPs to focus in AAC as a specialty; hire more SLPs trained in AT assessment and support, cut waitlists; and broaden the criteria for qualifying for assistance and standardize how clinics operate. Your access to AAC should not depend on where you live.”

Christine wrote: “You can teach a kid AAC but you have to do more, so that they’re not isolated. Educate more people to be comfortable with AAC. That’s part of AAC education so that it’s truly accessible.”

Therapies: Flexibility
In addition to AAC, parents identified other programs they would like supported:

  • alternatives to ABA such as RDI and DIR Floortime;
  • OTs and speech therapists that are not ABA providers;
  • counseling services by trained psychotherapists with psychology training instead of ABA certification;
  • Non-ABA Occupational Therapy;
  • Art, music and social programs operating independently of ABA centres.

In general, parents felt their therapy investments were reasonable, that they paid off and that they should be funded. None of the therapies that parents advocated are intensive in terms of hours. “We were told to put him into full-time therapy,” said Christine. “It [the Centre] looked awful, like hamsters on a wheel. We walked away from that.”

Lani wrote: “Our SLP knew we didn’t have a huge budget so she taught us to do a lot of things outside of sessions. Teaching the parents seems more sensible than warehousing the kids all week.”

Monica and her husband did much of her son’s therapy on their own, taking classes and using all the information they could find. She said: “Covering [the cost of] courses, books and materials would have helped us a lot.”

Kelly commented: “We need an end to the idea that any child needs 40+ hours of any therapy per week. We need a medical community that stops telling parents that if their children don’t have extensive hours of early intervention therapy before age 3 you may as well give up on them (This is not an exaggeration – some version of this message is pretty much all that parents get upon receipt of a diagnosis)!”

Inclusion: Community Involvement
Parents supported the idea that the broader community can provide services, rather than just ABA centres. This provides the advantage of including children in the real community, rather than silo’ing them in the artificial environment of the ABA centre.

Parents sought more education for teachers of community programs for kids, such as library programs, community centres and camps. Jeff wrote: “I’d like my son to be able to go to a [City-run] March Break program and know that the teachers will welcome him.”

Christine wrote: “They ignored us at the [province-run early years drop-in] program near our house because our son didn’t speak. It was awful. We had to find another program on the other side of town. This meant we couldn’t join our neighbours at the drop-in.”

School supports, parent input
Parents want to be involved in school decisions but often felt sidelined by defensiveness from the schools. Kelly wrote: “Individualized education plans (IEPs) in schools, speech/language pathology services, and occupational therapy are all things I have encountered barriers to accessing so far. Once your child is in school, they force you onto the local board’s waiting list for any kind of services. I’m not even sure we’re actually on the list. I’ve also seen many people mention that schools seem resistant to formal IEPs. This needs to change!”

Prejudice also made it more difficult for families to navigate the system. As one woman wrote: “For my parents, navigating these terms and accommodations within the system was made harder due to them being immigrants. …My dad in particular was my sister (and mine’s) biggest advocate as he constantly fought to have my sister’s special education team to include her with neurotypical peers, arguing that just because she didn’t seem to communicate ‘normally’ it didn’t mean she wasn’t capable of learning. Unfortunately, his concerns were often brushed off, I suspect because of his heavy accent when speaking English.”

Parents want transparency and flexibility in the classrooms. Jeff said: “Why not let us bring in our own support workers? Right now the [teacher’s] unions don’t allow us to bring in a PSW, even if we pay for it.” Another parent pointed out that parents are not allowed into special education classrooms and, without transparency, abuse goes unchecked. “We need the government to step in. I should be allowed to go into my child’s classroom.”

Making classrooms more inclusive was a key point by all parents. Kelly wrote: “I would like to see an understanding of accommodations that can and should be set up in our school, medical, and other systems. Accommodations for disability generally benefit everyone!” Christine agreed. “This is happening in other places. And most of the accommodations for autistic kids end up being good for all the kids.”

Programs for Young Adults and Adults
Parents also identified prioritizing inclusion in post-secondary education and the world of work. Their children’s futures were very much on their minds. Jeff noted: “We’ve kind of got things covered for now, my concern is no programs for teens and young adults, which he soon will be.”

Kelly also wanted an approach that doesn’t just focus on young children: “On my wish list: A true understanding of the idea that autism doesn’t end at 5, or 18, or 35 – that it is a lifelong way of being, and thus adults require understanding, supports, and accommodations as well as children.”

Cathy discussed the need to educate institutions of higher education about non-speaking autistic students: “He started attending a math course at GBC last month and even a progressive school like that is completely unprepared for a non-speaking student. Our educational institutions don’t know how to be inclusive of non-speaking autistic students.”

Christine wondered about the traditional approach by government to autism services: “I don’t know why autism plans are put with the Ministry of Children and Youth Services. What about autistic adults? Maybe it should go under a new portfolio or under several portfolios.”

Consulting autistic people/Inclusion
Parents we spoke to felt like they learned a lot about relating with their child by talking to autistic people, in real life and through online support groups. As one mom wrote on our page: “I appreciate having the perspective from actual autistic people to help inform my decisions for my son and family.” Cheryl said: “Neurodiversity is always at the forefront for me and tapping into the experiences of those who truly do get being autistic and what it means for them, perhaps their children (if they are parents) and how they navigate their lives.”

Some hoped that the new public discussions around the autism plan will raise awareness about the need to consult autistic people. Kelly wrote: “I think the politicians honestly don’t even know for the most part that autistic self-advocates exist.”

Christine wrote: “Our son has an autistic mentor, she is absolutely wonderful. I’d love to see an investment in mentorship programs. We also like to go to meetup for autistic kids that are just about having fun together, not ‘social skills’ class. Autism Ontario has some sensory-friendly events and he has met friends there.” Cheryl agreed: “These have exposed our family to great open-ended learning and some connection to families like our own.”

Cathy had advice for parents: “As a parent and sister and friend to autistic people, I encourage parents of newly identified children to be good listeners. It’s the best thing you’ll ever do for your child.”

New approaches and autistic acceptance
Many parents want to see a better understanding of autism informing programs and services. They pointed out that what they are reading about autism, versus what they see in real life in our province’s approaches, have not been the same. “I’ve learned a lot from what other people are doing in other places around neurodiversity,” says Christine. “I feel like we’re stuck in the past here.”

Kelly wrote: “I would like to see a common understanding that behaviour is communication, and enough empathy to understand that behaviour we perceive as needing to be ‘managed’ is so often a result of lack of ability to communicate needs and/or real sensory processing difficulties. I would like to see a system with caregiving supports modeled on a social model of disability, and funding models that support a social model of disability.”

Val wrote: “I’ve done a lot of reading about inclusive and positive communication and conflict resolution skills. We use natural and logical consequences rather than punitive methods to instill self-‘discipline’ (literally ‘give life to learning’). I am proud to have made things better for my child so far.” Similarly, Jeff wrote: “Once I learned about autistic acceptance, it improved our relationship. He is happier, we are all happier.”

A respondent whose sister is autistic, wrote: “The more I read on it, the more it becomes clear that what autistic people need more are alternatives like speech therapy, occupational therapy, accommodations, etc. ABA to me, seems more as a solution that only works on the surface and produces ideal results for neurotypicals, but leaves autistic people struggling with lifelong scars.”

Conclusion
The families we spoke with are positive, creative and affirming of neurodiversity. They have a lot to offer for program ideas that bring about full inclusiveness in society.

We too feel that our culture needs to break free of the institutional models of autism services, where children are segregated, and instead involve the community in creating welcoming and inclusive spaces. This doesn’t cost a lot and it benefits everyone. Mainly, it requires a shift in thinking about autism and inclusion. We are hopeful that a new plan, as it evolves over time, will value inclusion and autistic acceptance.

Until now, politicians have been crafting policy reactively. It’s time to be proactive. We hope our policymakers will reach out to parents like the ones we spoke with, to develop a sustainable plan for autistic inclusion in Ontario.

Note: Some names have been changed to protect the privacy of respondents.

 

 

The End of the Ontario Autism Plan: A New Perspective

 by A4A, Ontario’s first autistic self-advocacy organization

The news of the past week in Ontario has been somewhat surreal for autistic people. Every morning we have opened our browsers to see a trail of articles featuring parents speaking out against the new government for scrapping the former government’s Ontario Autism Plan (OAP). Parent after parent were interviewed, sometimes accompanied by photos with their children (who were never interviewed) and a standard headline associating the policy changes with sadness and tragedy.

But as autistic self-advocates, we feel neither sad nor tragic about the changes. In truth, we feel a sense of relief now that the OAP is finally gone.

This might surprise some of you reading this. That may be because all you saw in most media was a narrow group of parents.

So, would you like to hear what we think?

Looking Forward to a Better Policy
We feel optimistic about the changes. We are glad that there will now be a greater share of funding for low-income families and that the government has doubled funding for diagnostic hubs. These are both very positive changes!

We also see that there is the potential for more choice in service providers, instead of just Applied Behavioural Analysis (ABA) as under the former plan. Did you know that, when polled, autistic people consistently oppose ABA, at a rate of about 97-98%? Within our Ontario membership, the numbers are the same. While we understand that ABA funding will continue, we are confident that fairness will now prevail in allowing families the choice of other options.

We feel hopeful that a new policy may actually acknowledge the needs of autistic adults. Shockingly, the former government’s plan did not mention or allocate even one dollar of funding for adult services. We had a great deal of concern about this at the time the policy was being crafted, but we were shut out of consultations because our concerns didn’t fit the narrow agenda of the former government’s policymakers.

We also feel ready. When the original OAP was being developed, A4A had not yet unified as an advocacy group and important national groups such as Autistics United Canada were never consulted. We have now established capacity and built partnerships with private sector and not-for-profit groups, as well as relationships with provincial and federal officials.

These partnerships have been a wonderful opportunity to get down to work with partners and effect change, together. We hope to bring some of that spirit into consulting with the new government on adult community needs. We have just reached out to them and hope to hear back soon.

A New Plan
We have a wish list for autism policy in Ontario. Not surprisingly, it looks quite different than that of the parents rallying at Queen’s Park. There has been only one item on their wish list: ABA. It is absent from ours. We advocate a nuanced approach where solutions can be forged through partnerships across the community and by studying best practices in other jurisdictions.

We see at least three key elements that were missing from the OAP, which led to it being an unsustainable plan:

  1. Meaningful data about our population (not “data” prepared by a lobby group);
  2. Consultation with autistics, as the persons being served by the policy; and
  3. Concern for autistic people across the lifespan.

In our view, an ideal autism services plan in Ontario would:

  • Communication. Educate service providers, teachers, employers and physicians about alternative and augmentative communication (AAC) to make education, employment and other settings more accessible to non-speaking autistics. This training would increase employability, improve health care access and help non-speaking autistics to be included in society.
  • Accessibility. Leverage the power of inclusive (universal) design. Inclusive design makes life better for everyone. It is an inexpensive way to bring about immense changes in the classroom and other settings, reducing negative incidents and improving student and job retention. By looking at best practices elsewhere, the government can create a model for inclusive design that is portable to a variety of settings.
  • Special education reform. Collect data on special education and Individual Education Plans (IEPs), including number of school exclusions and the use of restraint and isolation. There has been a total lack of accountability in our school districts about this, making it impossible to quantify. But several reports we have cited shed light on what is happening. Our new government could work with partners to build a professional-development plan for teachers, as well as accountability structures.
  • Consultation. Ask autistic people about our economic, housing situations and employment status. By understanding economic factors in our community, the government can better develop programs to improve quality-of-life, with broader economic impact on our province.
  • Jobs. Build partnerships with the private sector around jobs. There is innovation and a spirit of cooperativeness in various sectors around jobs for autistics, and no government to date has adequately leveraged it. Many of our members are seeking opportunity, but are either underemployed or unemployed. Partnerships between private and public sector, with meaningful input from disability and autistic groups, would create an environment where more of us could find jobs and get out of poverty.
  • Housing. Identify partners in the community who can collaborate on housing and other initiatives. Not-for-profits working with IDD and disabled communities on issues like housing were shut out by OAP drafters, who only chose to pursue ABA. We have had amazing conversations with some of these groups, most of whom operate outside of the autism services industry and offer a much-needed, fresh perspective on change.
  • Assessments. Find technology solutions to the lack of access to diagnostic services and therapy for individuals of all ages in remote areas. We know that the new government is committed to this and we would love to be able to assist in getting these technologies up and running. As well, technology can be leveraged in all communities to benefit all. This is well overdue!
  • Equal access to services. A continued commitment to equal service for autistic people regardless of economic status. As the new government identified, there is no reason why a wealthy family who can afford a private assessment of “extreme need” should receive money while a low-income family lacks any access to assessment and services. We do not support the idea of “high-low” functioning labels. As the DSM now notes, autism is a spectrum, with a dynamic range of service needs and capacities much more diffuse than “high” versus “low”.
  • Choice in services for families. Make a range of services available for families. The former government’s plan created a monopoly, where providers ended up creating “problems” and “solutions” in order to keep growing and prices ran out of control due to a lack of competition. Everybody lost (except the ABA industry). As the new government knows through its consultations, families want services other than ABA.
  • Education for First Responders. There are already a number of first responder education programs in other jurisdictions that could be modified to our province to reduce violent incidents and keep people safe. This is an important issue affecting autistics and the entire IDD community that could be addressed through a program without much associated cost.
  • Facts, not rhetoric. The former government’s “Pay now or pay later” approach was a rhetorical tool, attaching fear to a massive expenditure to scare funders into signing. It was not based on real data. It was also hurtful to the “pay laters”… the thousands of adult autistics in Ontario who were shamefully assigned the label of system-burden, rather than persons with thoughts, feelings, ideas and something to offer. We are hopeful that the new government will work from a place of facts, not rhetoric.

So there are some of our thoughts and ideas about the future of autism funding in Ontario! There is a lot more to discuss. Policy must be crafted with consultations with a broad base of autistics in Ontario. Our population need to be front and centre in consulting on the policies that impact our lives. We went through the system as children and have much insight into that as well.

The end of the OAP and changes to the funding/services system in our province signals not just an ending, but a beginning. We are hopeful to have a say this time, as new policies are developed.

Quarterly Report

We have been busy since September’s Annual Report! Here is some of what’s new:

Medical School Seminars: Autistic Patient Experiences
We are excited to announce we have entered into a partnership with the Centre for Addiction and Mental Health to develop materials and give presentations to medical schools in Ontario on the topic of autistic patient experiences and communication! We will be presenting to a CAMH team in February and then again to a team of physicians in April. We hope to present to many classes at U of T and McMaster this year, and to begin to branch out to dental schools as well.

United Nations Reports, Meetings
In November, we met with UN Health Rapporteur Danius Puras to talk about our report on autistic human rights in Ontario. Mr. Puras was very engaged with the issue of AAC access, which executive member Derek Burrow discussed at length with him during the Ottawa meeting. Mr. Puras will be taking the information we provided back to the UN and incorporating it into an international report.

We are now also contributing to a new Canadian country report for Special Rapporteur on the Rights of Persons with Disabilities, Catalina Devandas Aguilar, with whom we will meet in April.

LiveWorkPlay: Outreach, Education
In January, we presented to LiveWorkPlay, an Ottawa-based charity that focuses on community inclusion through direct supports and services, identifying barriers and solutions to exclusion. We first connected around the issue of sheltered workshops and were excited to present and have a layered conversation with them about services, access, communication and autonomy. We hope to work with them on materials and other projects in the future!

Meeting with MP Mike Lake
We were very pleased to get a call from Progressive Conservative MP Mike Lake, who took a meeting with us while in Toronto. Executive members Gaby Aguirre, Anne Borden and Talia Johnson spoke with MP Lake about the ways we can connect around specific issues, such as services for adults and national approaches going forward. We are continuing this discussion with MP Lake online and bringing in other groups to the conversation as well.

MPP Chris Glover: Education Initiative
After being introduced at the Toronto Disability Pride March, NDP MPP Chris Glover  invited us to a meeting to strategize around reforming our education system for true inclusion. We are now part of a committee on collecting data about school exclusions and the use of restraint and isolation in schools, together with Luke Reid of Arch Disability Law Centre and other advocates. We are looking forward to working to ensure our school districts are accountable, that they collect data on every incident and make their classrooms transparent –as they should be.

Federal Autism Funding
In early January, we were contacted by federal Minster of Health Ginette Petitpas-Taylor’s office to discuss the government’s plans for autism funding. We are glad to see that the Liberal government is committed to disability rights and consulting the people directly impacted by policy. We are looking forward to exploring steps moving forward as the government develops its funding plans.

Autistic Self-Advocacy Coalitions
We have become an official Affiliate Group for the Autistic Self Advocacy Network! We are excited to share in strategizing, planning and supporting together with ASAN and the other affiliates. To learn more about the international autistic self-advocacy movement, visit the ASAN website.

We have also built a network with all chapters of Autistics United Canada and London Autistics Standing Together around national autism policy advocacy. We are united on the human rights issues for autistics of all ages and dedicated to fair representation in funding and services consultation. We are reaching out to bring more autistic self-advocacy groups into the network.

Disability Day of Mourning
Every year on March 1st, the disability community comes together to remember the victims of filicide – people with disabilities murdered by their family members. Vigils are held on the Day of Mourning in cities around the world. This year’s Toronto vigil is being organized by Rishav Banerjee, Kim Crawley, Sarah McFadyen, Raya Shields and Cathy Wright, to be held at Ryerson University.

Please watch our social media or this blog for full details of this important community event. (Update: Member Anne Borden was interviewed about filicide and disability on Accessible Media Inc. Listen here.)

Pseudoscience Campaign
We continue to speak out against autism pseudoscience, most recently authoring a Guide for Physicians on recognizing and responding to autism pseudoscience. Accessible Media Inc recently spoke with co-founder Anne Borden about autism pseudoscience and our CAMH partnership: listen here.

Ontario Human Rights Commissioner Renu Mandhane
In February, we will be meeting with the Ontario Human Rights Commission to talk about human rights issues for autistics in our province, with a focus on our province’s education and special education systems. We are honoured that Commissioner Mandhane is meeting with us and look forward to it.

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

Autism Pseudoscience: A Guide for Physicians

by  A4A Ontario
Print version: Physician’s guide to autism pseudoscience

Introduction
When a parent tries to “cure” their autistic child with pseudoscience, they are physically and psychologically harming their child. Regardless of the parents’ intentions, that is the result.

We are reaching out to you, as physicians, to help protect autistic children. You are often one of the first points of contact for families in crisis. You have influence and can take action to protect the health and safety of children.

In this paper, we discuss:

  1.  the impact of autism pseudoscience;
  2. how to detect it;
  3. how you can respond in your practice; and
  4. other actions to protect children.

The Lifelong Impact of Autism Pseudoscience
Autism pseudoscience is very common — and it is big business. Parents have spent millions on unproven autism treatments such as gene therapy, hyperbaric oxygen therapy, chelation for autism, MMS, DAN/MAPS diets and off-label CBD and medical marijuana. The supplement industry promotes hundreds of supplements “for autism” and some providers sell these out of their offices, taking a commission from manufacturers. Other times, parents buy phony products online or may travel as medical tourists for so-called treatments.

Let’s be clear: No autistic child wants to undergo a phony autism treatment. These treatments are frightening, painful and emotionally devastating. They are also often physically risky or harmful. Some children have died from treatments such as MMS and chelation-for-autism.

At A4A, some of us are survivors of these treatment scams, enduring years of our parents’ senseless rituals around food, “biomedicine,” drugs and other bogus treatments to supposedly cure us –of being ourselves.

Far from being positive, the results were: PTSD; fear of medical providers; eating disorders; low self-esteem; inability to trust; identity issues; broken family relationships and more. Some of us had to walk on eggshells at home for fear of more painful treatments.

When parents choose pseudoscience, it also often replaces crucial, legitimate therapy for their kids. For example, a psychotherapist recently told A4A that her client’s family discontinued essential therapy services because their alternative to psychotherapy was to take their son chelation therapy.

Survivors’ lived experiences show that adults who spoke up against a parent’s use of autism pseudoscience sent an important message to the child that this is not okay. By contrast, when adults/providers were silent about it, survivors received the message that other adults think this is fine and no one will help me.

If you encounter families who are using autism pseudoscience, it is important to say something. There are also other steps you can take to intervene.

Recognizing Autism Pseudoscience
Identifying the Terminology. Autism pseudoscience sellers aren’t allowed to use the word cure in their marketing materials, so they’ve developed euphemisms for the cure promise. Parents pick up on these terms. Be aware if parents are using terms like:

  • “recovery from autism”
  • “detoxification”
  • “addressing the core symptoms of autism”
  • “biomedical approach”
  • “parasite removal”
  • “methylation”
  • “healing protocol”
  • “restoring neuroimmune levels”

Other Signs. The Westminster Commission on Autism has authored a report on autism pseudoscience that outlines the problem and identifies some signs of a practitioner selling pseudoscience, including:

  • Relying on anecdotal evidence/testimonials;
  • Dismissing scientific views on the condition;
  • Offering one cure for a broad range of conditions;
  • Inventing new conditions;
  • Telling patients they “have to believe” for it to work;
  • The product is expensive and therapist gets financial gain from each product sold;
  • The therapy can be administered by someone with no medical qualifications.

Off-label use of prescription products is another warning sign.

Parents may:

  • present with a completely healthy child, but insist their child needs medicine;
  • attribute developmentally-normal behaviours (such as excitement, fears, rebellion or night waking) to an imagined illness;
  • perceive autism itself as an illness or a toxin;
  • have a pattern of provider-shopping;
  • claim their child has other conditions such as “PANDAS” or “chronic Lyme”;
  • refer to their child’s personality traits/interests as “behaviours”;
  • claim that there is a cure for autism.

The child may:

  • seem afraid to express/speak;
  • be unwilling to contradict the parent;
  • repeat the same jargon as the parent;
  • not have his or her AAC device available because the parent did not bring it;
  • show a trauma response when the topic of the treatment is brought up.

Taking Action in the Clinical Setting
Two types of consent. When you meet an adult patient using pseudoscience to treat their own conditions, you may decide to step back because the patient is consenting to their own treatment (even if it may not appear to be in their best interest).

With autism pseudoscience, a different approach is needed because the child cannot give informed consent. Parents are proxy-consenting for children who do not want to undergo these treatments–treatments which have no evidence of benefit and clear evidence of harm. It is important to step forward in these cases.

Here are some strategies:

Define the patient
Make it clear at appointments that you value and acknowledge the needs of your patient.

  • Speak directly to your patient by name;
  • If your patient is non-speaking, ask the parents to bring along your patient’s AAC communication so he or she can communicate directly;
  • Always assume your patient is listening. Even if they are missing some of the details, they are perceiving the tone around these subjects;
  • Redirect from talking about your patient. Example: if a parent complains to you about their child having trouble sleeping, turn and ask your patient, “How are you feeling at bedtime these days?”;
  • If a parent mentions a pseudoscience treatment, let them know about any potential harm associated with the treatment and that you’re concerned about its impact on your patient.

Stay connected

  • Keep track of any missed appointments and ensure that your patient sees you regularly. Children whose families have dropped out of the system are more vulnerable to medical abuse.
  • Consider referring your patient to an expert such as a speech language pathologist or psychotherapist who can monitor and forward notes to you.
  • Stay calm about autism. Many parents report that they were frightened when providers talked about a “narrow window for early intervention” and felt like they had to try everything on their autistic child (including pseudoscience) before it was too late.
  • People make bad decisions when they panic. If you sense that a parent is panicking, provide resources on autism acceptance and autism throughout the life span. Provide written information and links. Don’t let them walk away empty-handed.
  • Use the EGRIP strategy. This article by Gleb Tsipursky for Scientific American is a great starting point in applying the EGRIP strategy in practice.

Reporting
There is Canadian precedent for adults to step forward and protect the health rights of children. Medical neglect is included in reporting requirements for suspected child abuse. There are also mandatory reporting requirements of teachers and providers who become aware that a child is going to be sent abroad to undergo procedures that are illegal in Canada, for example, “gene therapy” for autism.

If you are unsure whether or how to report suspected medical abuse, ask a social worker or other professional at your clinic. If you do not know who to consult, contact us and we can connect you.

The Situation in Ontario
Autism pseudoscience is prevalent across Ontario. We have identified 14 Ontario clinics promising to treat autism through a range of protocols including chelation; vitamin injections; off-label prescription drugs such as long-term antibiotics; bleach enemas (MMS Miracle Solution); chemical castration; herbal and vitamin supplements; hyperbaric oxygen tanks; severely restrictive diets; and other protocols.

In Ontario, there are currently no Provincial regulatory measures to stop practitioners from marketing pseudoscience. A group of MDs in Ontario is working independently for better regulation. They are seeking to collaborate with the federal government on a report addressing gaps in regulation and enforcement, to establish a clear path for policy around health claims for CAM and autism in Canada.

There is precedent for making these changes. In the UK, the Westminster Commission on Autism has written a comprehensive report that identifies such gaps in their current regulation and are working to address this problem so that complaints no longer fall through the cracks. The UK working group are helping to ensure that its government is more proactive in regulation and enforcement.

We hope to see the same in Canada in 2019.

Contact Us
Thank you for reading this report and for caring about the health and safety of autistic patients! Please follow us on Facebook or Twitter @a4aontario to keep informed. If you would like any other information, please send us an email at a4aontario@gmail.com.

 

2018 Human Rights Report to the UN: Introduction

NOTE:We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This is the intro. 

Introduction
In this report, we discuss current human rights abuses against autistic Canadians. We start with a history of autistic life in Canada and a discussion of issues in data collection, then move on to our areas of focus. We will focus most specifically on Ontario (where we are based), with some data from other provinces and territories.

Our areas of focus are: schools (exclusion, restraints, isolation rooms); medical settings (lack of consent, inaccessible care); employment (access, exploitation in sheltered workshops); and housing (the impact of poverty, abuses in group/residential homes).

We write this report with a keen awareness of how intersectionality (the interconnected nature of social categorizations such as race, class, gender and neurotype) deeply impacts our lives, as well as the impact of trauma and the need for trauma-informed best practices in schools, medical settings, housing and social services.

Appendix 1 contains a list of institutions you may wish to contact and visit when you are here because they have been the subject of human rights complaints or are otherwise referenced. [redacted from online version]

About us
Autistics for Autistics Ontario (A4A) is an autistic self-advocacy organization. We are autistic youth and adults from a range of professions and backgrounds, advocating for the rights of all autistics in our province.

Since our founding a year ago, we have become involved in campaigns on issues such as: sheltered workshops; schools and housing; access to medical care; abusive “treatments” on children; violence/murder by caregivers; sexuality education; autism acceptance; and the need for Canadian policymakers to consult autistic people in the decisions that affect our lives.

For more information about A4A, please read our Annual Report (attached).

Read the full report

2018 Report to the UN, pt.1: A Brief History of Autistics in Ontario

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This section provides some historical background into the barriers we face today.

A brief history of autistics in Ontario: The residential institutionalization era
In the first half of the 20 century, Canada institutionalized many IDD and autistic people. Under the medical model of intellectual disability, many families viewed institutionalization as essential and very few parents had the good sense to keep their children out of institutions.

In residential institutions, abuse was common and there were no genuine systems in place to prevent it. Indeed, it can be argued that abuse was built into the institutional model, where an unachievable level of compliance was demanded from all residents. Residents were not allowed freedom of movement, were forcibly committed/or lacked any means to live freely, were overly-medicated with extreme drug regimes, were abused physically, sexually and emotionally and were forced to do unpaid manual labour to earn profit for the institutions under the auspices of “training”.

For autistic residents, PTSD and a host of so-called “behaviours” resulted from these experiences. These behaviours, which communicated the very inhumane conditions under which residents lived, were received with further punishments from institution staff. This pattern of abuse led to a lifetime marked by fear and pain for autistic and IDD residents. As autism historian Steve Silberman writes, “Behaviours caused by institutionalization under brutal conditions were then viewed as part of the ‘natural’ course of autism.”

The institution at Huronia, located in rural Ontario, is an example. Huronia was opened in 1877 as a “home for the feeble minded”. In the early years, residents lived and slept in wards with as many as 50 residents; in the 1970s, the facility was divided into smaller units with 12 residents living side by side. Beatings, isolation, restraints and humiliation were a part of everyday life. Forced sterilizations were routinely performed, despite it contravening Ontario law. Patients were forced to work for no wages in farming and piecework. Due to this practice, the institution ran at a profit. Most residents did not have the freedom to leave the institution; at first due to commitment laws and later due to poverty, fear and other factors.

Except for schooling or outings, male and female residents did not interact. However, male attendants had unregulated access to both female and male residents. As the later class-action suit documented, rape was endemic at Huronia.

In the early 2000s, Huronia was the subject of a $35 million dollar class-action lawsuit over the allegations of widespread physical and sexual abuse. The lawsuit brought new information to the surface and was a moment of reckoning for Ontario’s institutional system. The lawsuit was fully settled in 2013 and included apologies from the governmental parties under whose watch the abuses occurred.

In March 2009, the Government of Ontario officially closed the last remaining institution in the province. A period of “de-institutionalization” in Ontario followed, where the government re-introduced institutionalized persons to the community. The period included the birth of a vibrant Community Living movement, which still exists today – advocating for independent living, free of institutionalization and free of poverty.

In the 1980s, disability became a protected category under the Canadian Charter of Rights and Freedoms. Very slowly, policy has begun to turn towards an accommodation model of disability and away from the medical model. In March 2010, Canada ratified the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD commits Canada to a series of measures and principles to improve the social and economic condition of people with disabilities while taking steps to improve their legal and political rights.

Read the full report