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A4A Members’ Speeches to the Ontario Accessibility Town Hall, April 2019

On April 10th at Queen’s Park, provincial MPP Joel Harden organized an accessibility town hall, to discuss access issues in Ontario. Two of our members, Anne Borden King and Cathy Wright, spoke about access to AAC and other accessibility and human rights issues.

Each speech was 3 minutes, in a series of speeches by people with a broad range of disabilities, read into the public record.

SPEECH 1: ACCESS IS A RIGHT
I’m Anne Borden, a co-founder of Autistics for Autistics Ontario, Ontario’s autistic led and run self-advocacy organization.

For me, accessibility means:

1. Communication choice. Autistic people who are non-verbal or semi-verbal have the right to access for augmentative and accessible communication, AAC. Whatever form they want to use, whether sign language, on paper or using technology or other means.

Unfortunately, ABA providers in Ontario typically believe in waiting at least 6-12 months before “allowing” a child to use AAC (and this is in the best-case scenario). It can add up to years of a child’s thoughts and feelings not being heard. Many schools and special education classrooms here don’t prioritize the right to communicate for nonverbal children. Some of our members did not get access to AAC until they were teenagers, some as adults. Some autistic people never get access to AAC.

Also, institutions such as health care, the workplace, housing and services need education on communicating with AAC users.

No one should be denied AAC in the name of “therapy” or any other reason. We can educate on AAC and we must, in Ontario.

2. Inclusion. Accessibility for autistic people also means inclusion in classrooms as the first choice, as the norm. We know this works because we’ve seen it in other places outside this province.

Accessibility means young autistic children growing up IN their communities, not in the segregated setting of the Intensive Early Intervention Centre. 98% of autistic people, when polled, oppose intensive ABA centres. For an autistic child spending their days there, at work, when they could be playing and connecting with their peers instead, is wrong.

Removing autistic children from their community leads to a lifetime of segregation.

3. Autonomy. Accessibility means autonomy in housing, employment opportunities and being a part of the social fabric. Right now, in many ways our province is still living in the past. Although the last residential institution closed 10 years ago, the mentality of segregation has not disappeared. Some service agencies are still following the medical model of disability instead of the social model. There are many ways to make fair employment and autonomy with the right supports a reality for more autistic adults.

We have to understand why accessibility matters. We have to understand how inclusion lifts us, all of us. And our policymakers and service agencies need to understand that access also means: access to consult on the decisions and plans that impact our lives.

Nothing about us without us

SPEECH 2: THE COMMUNICATION RIGHTS CRISIS
I’m Cathy Wright and I’m here to talk about the Communication Right Crisis.

The majority of non-speaking autistic people have no access to communication tools.  The majority are presumed to be intellectually incompetent.  Presumed by professionals, their teachers, and even their families to be incapable of thinking, learning, and directing their own lives. We live in an ableist society that makes assumptions about people based on their support needs.  They are labelled low-functioning or severely autistic because they often need support with the basics of daily functioning and because there are sometimes behaviours that are not well understood, like meltdowns.  And rather than providing communication tools such as Augmentative & Alternative Communication systems, the focus ends up being on “behaviour”.

Although this is a huge issue, affecting all areas of life, I’m going to focus on the education system, where the opportunity is greatest to make needed changes.

I have a 23-year-old son, who is a non-speaking autistic man.  From early childhood, he was presumed incompetent at school.  As parents, we were given very poor professional advice.  We were not told that a communication system might change our son’s life.  In a psych test at age 14, my son scored less that the 1st percentile. 

At 17, a support person who had experience  with supported typing offered a letterboard to my son and we began having the first conversations with him ever. 

We learned that he was a polite, empathetic, sensitive, funny kid who was interested in art, politics, world affairs and travel.  He desperately wanted to be provided with an education but that didn’t happen.

Although his school embraced his communication system and recognized his intellect, he still had very high support needs.  He still needed help using the washroom, eating, sitting in a classroom and managing sensory issues and the only place they provided support staff was in special education classes where he couldn’t receive high school credits. 

When we tried to provide a support worker for him to attend credit earning classes, we were prevented from doing this due to collective bargaining agreements.  He attempted to use the PLAR system to be awarded a credit, but it wasn’t an accessible system. 

I fought with a school superintendent over that, who just stopped responding to my emails as a way of dealing with me. My son left high school at age 21 with no credits and at 23, still hasn’t been able to access the education system in a meaningful way.  He is taking a math course right now at a local college but ended up changing his status to audit because his school offered him a comprehensive accessibility plan and didn’t follow through on the plan. My son would rather be in a learning environment, even under those circumstances, than not be learning so that’s what he’s doing.  Incidentally, there are a number of colleges in the United States that admit students who use AAC.  Canada lags behind in many ways.

If you’re inclined to think that a non-speaking autistic person who is discovered to have the capacity to think, learn and communicate in a sophisticated way is a miracle of some kind, know that we have met well over twenty people just like my son, who are using Augmentative & Alternative Communication devices to direct their own lives.  Yet it remains that the vast majority of non-speaking autistics are trapped inside their bodies with no communication tools.  They are institutionalized in high numbers.  Their support in school is primarily behaviour management.  Why not instead offer communication tools?

Our schools lack the capacity to support communication in non-speaking autistics.  They have staff they call autism teams who don’t have a clue about AAC and this is even true of Speech Language Pathologists.  Similarly, their psychologists will proceed with testing on students who have no communication tools, and declare them intellectually incompetent.  Most parents don’t know any better because we look to these professionals for information.

School systems blame lack of funding and other resources, but they are not even providing the most basic support to their non-speaking students.  Communication is a basic human right.  When communication rights are denied, of course the result is students who are perpetually in a fight/flight state , who get labelled incompetent. Even when parents who do know better advocate for their children, school push back hard and gaslight us.

Currently, there is much in the news about ABA for autistic children and I don’t have time to talk about how problematic that is.  I will only say that it’s past time to recognize that we have a communication rights crisis. Schools must be mandated to provide communication systems to their non-speaking students and this must happen now.

 

 

 

Quarterly Report, April 2019

We’ve been busy since January’s Quarterly Report! Here is some of what’s new:

Making History in our Province
In March,  for the first time in history, autistic people were invited to Queen’s Park to discuss autism policy. MPP Amy Fee welcomed us in this first conversation and it was a moment that none of us will ever forget. In April, we were invited to serve on Ontario’s autism policy consultation committee–the first time that autistic people have consulted about autism policy in our province and that an Ontario government has sought meaningful data on our community. We are very glad to now have a seat at the table and a voice in the decisions that affect our lives.

Outreach and Education
This spring, we rolled out our partnership with the Centre for Addiction and Mental Health and University of Toronto professors to develop materials and present to medical schools in Ontario on the topic of autistic patient experiences and communication. In March and April our members presented to two CAMH teams and a group of Psychiatry Residents from University of Toronto. We’ve also been consulting with a range of service providers on how their services can be improved for autistic clients. We are thankful to all our community partners for inviting us to be a part of these wonderful projects!

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 was organized by Rishav Banerjee, Kim Crawley, Sarah McFadyen, Raya Shields and Cathy Wright, at Ryerson University. It is a difficult but important day. Thank you to everyone who came out to remember and to say: never again.

Accessibility Town Hall
In April, two of our members (Anne Borden and Cathy Wright) attended the Accessibility Town Hall at Queen’s Park, organized by MPP Joel Harden. Each spoke about the right to communicate and the need for access to augmentative and alternative communication (AAC)–communication methods used by non-verbal autistics. Anne and Cathy pointed out that AAC is often denied to people out of ignorance or in the name of “therapy.” They also advocated for broader community education to improve access to employment, medical care and other aspects of daily life for AAC users in our province.

Human Rights in Schools Initiative
We are working with community partners on a committee for collecting data about school exclusions of disabled children and the use of restraint and isolation in schools. Currently, the committee is researching best practices and getting input from groups who have made meaningful change in other jurisdictions such as in Alberta, which recently banned the use of isolation rooms in schools. We are looking forward to working to ensure Ontario school districts collect data on every incident, make their classrooms transparent and have systems for accountability to stop abuse.

Ontario Human Rights Commissioner Renu Mandhane
In February, we met 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 met with us and we learned so much from our meeting. We hope to meet again soon around advocacy matters and human rights for autistics in our province.

National Coalition
We are now in a network with all regional chapters of Autistics United Canada and London Autistics Standing Together, as well as self-advocates in western provinces, around national autism policy advocacy. We are united on advocating for fair representation in policy consultation. On April 8 and 9, members of our group met with members of the federal government on Parliament Hill for initial conversations on consulting about autism policy. The meetings went very well and we will keep you informed with follow-up!

Neurodiversity Flag Raising
On April 15, we will raise the Neurodiversity Flag at Toronto City Hall. It will be the first time it has been raised in Ontario. Flag raisings are also taking place in Halifax, Winnipeg and Vancouver. Neurodiversity means that all of us have a role to play in society and we should be included and valued for who we are.  In addition to speeches, we will observe a moment of silence for Ontario’s residential institution victims and survivors. The Neurodiversity Flag will fly for 24 hours.

Donations
We are now accepting donations! We use donations for making our events accessible with ASL interpreters, for printing information flyers, for materials such as our Neurodiversity Flag and table banners and more. Want to donate? Click the Donate button on the menu.

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

“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.