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“If not ABA, Then What?”

Over the past month, we’ve been asked by parents, policymakers and concerned Ontarians: What are the alternatives to ABA? Are there other alternatives?

Before we answer (below), we’d like to reframe the question and ask: why would anyone think that ABA is the only way…or that there is only one way to provide supports and services to autistic people? We know that for almost any challenge there are multiple solutions, and that creativity and imagination drive the best approaches. Why would it be different for raising autistic children?

There are many places where ABA is not used and yet children learn life skills and benefit from inclusion. We know that inclusion is associated with positive life outcomes and that by contrast ABA fosters segregation, from the moment a child enters the closed setting of the intensive early intervention centre. Ontario’s former autism policy was an ABA-based plan. We don’t see evidence that this was an informed decision. It appears to have been an appeasement decision–one that promoted segregation and diverted funds for much-needed services. Moving forward from the mistakes of the past, our new government can make change by:

  • Assessing data on community needs;
  • Reviewing independent research on autism services;
  • Analyzing best practices for school inclusion from other jurisdictions;
  • Continuing to consult with autistic Ontarians;
  • Using the above information to inform policy.

Making good autism policy in Ontario is not a matter of #pausingtheplan and then going back to the same old thing. We’ve needed a change in our province and it’s finally happening. This article is a start of a broader conversation on how to change autism services and unroll inclusion in Ontario in the best way possible.

What Do Other Places Do?
A good question to ask when making public policy decisions is: what are other places doing, that works better?

We will give two brief examples for now: Scotland and England. (The inclusion team we are on will detail others in its upcoming report.)

Neither the UK’s National Institute for Health and Care Excellence (NICE) nor the Scottish Intercollegiate Guidelines Network (SIGN) endorse or recommend ABA. The NHS of both countries do not recognize ABA as a science. ABA is used in a handful of specialized centres in England, having served around 2,000 students and is viewed as a “last resort”. Local health authorities in England and Scotland also do not fund ABA.

What this means is that the vast majority of autistic children in these countries do not have ABA, yet they are still able to learn life skills, be included in society and have positive outcomes.

Mainstream offerings for autism in these countries are determined by local authorities, but generally include funding and support for speech language pathology (SLP) and occupational therapy (OT). Increasingly, these services are not about taking the child away for 1:1 sessions, but to educate those around the child in terms of their interactions to foster communication and support self-care skills, together.

Augmentative and alternative communication (AAC) for non-verbal or partially verbal students is a part of SLP there. Whereas it would be standard for a Canadian ABA-trained SLP to wait 6-12 months before introducing AAC, a non-ABA SLP will likely include AAC from the start as needed, not wanting to sacrifice a child’s need to communicate in the quest for immediate speech.

Newer types of programs, such as SCERTS, are being rolled out in Scotland and the UK (as in the US and other countries). Governments there are investing in piloting models such as SCERTS, which focuses on: Social Communication, Emotional Regulation and Transactional Support, emphasizing the role of the family and community as partners in communication and implementing accessible design and supports.

Programs such as these proactively prioritize inclusion, a crucial part of autism services that was not a part of the former autism plan in Ontario. Inclusion may be more intrinsic to programs in Scotland and the UK because the culture takes a less segregationist approach to autism than Canada has (to date). For example, the concept of “early intervention” (autistic toddlers getting 25-40 hours per week of therapy away from family/peers) does not reflect the fabric of social life there. Instead, autistic children are included in community life from the start.

The idea that children would be removed from the community and sent to “early intervention centres” isn’t the normative response to a diagnosis there, nor is it in New Zealand or a range of other countries, which instead use non-intensive, family-centred therapies. The Maori term for autistic is takiwatanga, meaning “his or her own time and space,” signifying a respect for the timing, spacing, pacing and life-rhythm of autistic Maori. The term has taken on a broader meaning throughout Australian culture as they work for inclusion, fairness and autistic acceptance.

By contrast, as we noted in our Human Rights Report to the United Nations, Ontario’s approach to autistic children has typically reflected the older, residential-institution approach to autism. Removing children from their peers at an early age sets the stage for a lifetime of segregation. Some argue that this segregation is “the only way autistic children can learn life skills,” but that argument doesn’t hold up when we compare with places such as Scotland and the UK, where children learn life skills without being segregated.

We can then see that segregating autistic children doesn’t represent a therapeutic need at all: it just represents tradition—a tradition we need to end.

The  government of Scotland recently committed to meaningfully involving autistic people in all decision making about autism policy. In this commitment, it will be heading off many of the problems that exist when institutions try inclusion but lack direction. Their proactive, positive approach is summarized in this statement:

 Autistic people contribute much to Scottish society and with the right support many could contribute much more.”

All countries and regions seeking to make change need to be communicating with each other and consulting with students and self-advocates. There is room for improvement in all inclusion-based programs. Our governments can learn from other jurisdictions what has worked and what hasn’t, and let that inform its policy decisions.

What about Ontario?
Autism policy in Ontario is heading away from older segregation models and towards an inclusion model:

  • Under the new autism plan, OT, SLP, and AAC supports are funded;
  • School districts in Ontario are learning newer models such as SCERTS (for example, its founder will be presenting to the Halton Region School District this month);
  • We have a government commitment to move towards more inclusive schooling;
  • Autistic people are being consulted in policymaking, for the first time in our province’s history.

Segregation has historically defined the experience of many autistic students in Ontario. From the moment of diagnosis, autistic children are tracked into intensive therapy centres, while their peers are getting to know each other in their neighbourhood preschool and Early Years Centres. When autistic children leave the ABA centre to enter primary school, they often have no friends because they were removed from their community at diagnosis; likewise, their peers don’t have experience with autistic children.

Although many teachers have good ideas and intentions for inclusion, their efforts to connect can often fall flat because our education system is still entrenched in the notion of  2-tier education. With no umbrella of accessible design in our school districts, autistic students are often re-routed into our troubled special education system–despite advocacy by their parents–or are even excluded in part or wholly from the education system.

Some may push back that “ABA promotes inclusion,” but there’s no evidence to support that claim. While accessible design as well as inclusion programs like SCERTS involve all children and adults in making spaces welcoming, the ABA model focuses only on the individual “pathology” of the child, targeting behaviours (such as special interests or flapping) and trying to eliminate them. That focus is incompatible with our society’s values about diversity and the collective role we play in accessibility, making ABA an unsustainable approach to disability.

It is a significant step forward that our government is funding OT, SLP and AAC and consulting on comparative approaches to autism policy. With the right tools and a spirit of bipartisanship, our province can become a leader in Canada on inclusion.

This is an important moment in Ontario. What happens here reflects a national policy conversation as well. It is following in the direction of the broader society: the understanding that neurodiversity is part of diversity. Reforming the autism services paradigm opens up broader inclusion throughout society. With this shift, we hope that there will soon come a day when people will no longer ask, “what will we do without ABA?” but instead ask, “why on earth were we doing ABA for so long?”

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 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 hopeful that fairness will now prevail in allowing families the choice of other options.

We feel hopeful that new policies 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.

Times have changed since 2017. 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 conversations with provincial and federal officials.

This means 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 autistic community needs, across all parties.

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 former 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.