Centering Autism Perspectives in Canada

PHOTO CREDIT: Polina

This Episode’s Guest

Seiun Thomas Henderson is currently the Director of Research and Innovation at Giant Steps Interdisciplinary Autism Centre in Montreal where he leads initiatives that bridge research, practice, and community impact. We discussed outdoor play in a previous episode which has been a part of his work as well. Thomas has dedicated his career to centering Autistic voices and promoting neurodiversity-affirming perspectives and approaches. Alongside his professional work, he is a Zen monk, integrating a reflective perspective into his advocacy for more inclusive, nature-connected educational opportunities and spaces.

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How Thomas Entered the Field

Thomas kind of happened into the field during his undergraduate studies, he explains. He took a job at Peterborough Community Living, and was placed in a group home for 5 adults where 4 were Autistic. This was in the late 1980s and he did that for a couple of years. It was super impactful and transformative to Thomas. 

On his first day, one of the residents walked up to him and asked him when his birthday was then told him what day of the week Thomas was born on. He asked for Thomas’ phone number, but it turned out he already knew it because this was back in the day of phone books and he’d actually memorized the Peterborough phone book!

These things were extraordinary and surprising, Thomas says, and this person was a savant in many ways, but it basically hooked him. From that point on, he says he has just been completely fascinated with the different ways that different minds and Autistic minds perceive and work in the world. This fascination has driven Thomas across his career. Thomas moved to Montreal after finishing his degree and began working at Giant Steps in 1993.

Where Autism Was 35 Years Ago in Canada

Thomas says that public awareness was virtually not existent at that time. Perhaps his knowledge was from the movie Rain Man. He received some great training on the job and mostly the people that he was working with taught him a lot about Autism. He says that it was also a very different time in terms of diagnostic trends and criteria. People who were camouflaging or had milder presentations or lower support needs were not picked up at all by the diagnostic criteria.

When Thomas moved to Montreal in the early 1990s, it was just pre-DSM IV, when the diagnostic criteria was enlarged to include sub-diagnoses such as Asperger’s, so you started to see a shift in terms of the numbers of people that were being diagnosed and the profiles of people who were being diagnosed, but in the 1980s, Autism was still considered very rare and virtually not understood as well as not spoken about within the public space, Thomas explains.

A lot of the training Thomas had was on the job with the professionals that were his mentors, so it wasn’t necessarily formal training. He did pursue graduate studies in Autism later, but essentially, he was learning on the job. Access to information was very different pre-internet, but the amazing thing back then was that there was a lot of excitement about the field because it was something that was emerging, Thomas shares.

People were very actively organizing conferences and providing training, Thomas continues, so there was a lot of community building. Parents were forging the way in a lot of cases and driving a lot of the advocacy work, calling for specialized services. Thomas feels very lucky to have had fantastic mentors: both Autistic people he was working with as well as professionals. Many are still in his life, over 30 years later. He says he benefited greatly from working in a community of people.

A Focus on Strengths and Inclusion

Giant Steps was founded in 1980 and from the very beginning was innovative in its approach. It was focused on inclusion. It was focused on providing alternatives to some of the old school behavioral intervention approaches that weren’t necessarily aligned with the values of the organization, Thomas states. It focused on and recognized the strengths that you see in Autism. Thomas was very fortunate to grow up in the field in environments that were very person-centered and positive versus deficit-based.

Thomas took some breaks to do other things in his career. He left Canada for a period of time and lived and worked abroad doing other types of work. He also had a period where he led a CEGEP-based research center related to inclusion and disability, including in the autism space.

A Refresher on Giant Steps

Giant Steps has always been home to Thomas. Giant Steps is an interdisciplinary Autism centre, first and foremost established as a school by a music therapist in 1980 that started in a church basement. At this point, they have a new facility comprised of four integrated pillars: a school that includes preschool, elementary, and high school services, an adult education and employment sector, the Resource and Training Centre that does all of the community support work, and the research and innovation hub in the form of a living lab which Thomas directs.

Standards for Service Across Canada

I asked Thomas about his experience with government in that Autism is generally in the realm of education, which is provincial in Canada. He says that in fact, between the provinces, there’s been a huge amount of variation and disparity between how autism services look both in education and in health. It’s starting to shift now, but it’s pretty recent.

There’s still a lot of distinct ways in which things are rolled out and still today, early intervention services in British Columbia (BC) compared with Quebec are very different things including the way that parents are provided resources, what their options are, and so on, Thomas says. It’s a very different landscape.

At a Federal level, Thomas continues, there needed to be established standards for care and for services, that is, an established vision for Autism in Canada. Leading up to the launch of the Canadian Autism Strategy a couple of years ago, there’s been an ongoing kind of period of work of leaders from across Canada who were part of something that is called the Autism Alliance of Canada, Thomas shares, that brings together people annually in Ottawa including some Autistic advocates, people working in the field, researchers, and people from the political space as well.

Before establishing this strategy, Thomas explains, they were really thinking about what the priorities and needs are of Autistics and their families and the people working in the field across Canada, and what could happen at a national level that would help advance the situation for Autistic people across the country, including employment opportunities–much of which is provincially managed.

There’s a lot of areas to figure out how that’s actually going to work in terms of providing mechanisms for equalizing or normalizing the kind of way that Autism services are provided, but there has been significant advancement, Thomas believes, and thinks the fact that we actually have a National Autism Strategy is incredible.

I referred to the podcast episode I did with Kelly Bron Johnson, who has worked with Thomas over the years in Montreal, and with Anne Borden King who started Autistics for Autistics in Ontario where they were speaking about some of the other things happening in Canada with regards to Autism advocacy.

The Impact of Different Languages on Services

I shared how Quebec is a French province in Canada and how although most people living in Quebec are bilingual, there are a portion for whom French is a second or third language. Dr. Stanley Greenspan always shared that it’s important for parents to speak their native language with their children because that is the language in which they have the most rich affect, but parents sometimes choose one language or another, especially if their children are non speaking, so I wondered about the impact of providing bilingual services, as Giant Steps does.

Thomas says that it’s been interesting in lots of different ways. And in terms of what language to speak with your child, there’s increasing research and evidence that bilingualism can be really great for Autistic kids, Thomas adds. It can actually support language development even for nonspeaking kids. The school system in Quebec is divided between Francophone and Anglophone boards, Thomas continues.

Giant Steps sits outside of that because they’re publicly funded, but a private institution. They have both French classrooms and English classrooms. But, in reality, those distinct boards have their own ways of doing things and there’s significant cultural differences in terms of how people speak about perspectives on autism, he adds, even in the language that is used can be quite different.

There are certainly issues of access for English-speaking kids to English-speaking services, especially in the early years. Often when early intervention services are provided in Quebec, they are provided through the public health system only in French, even if the child has not had exposure to the French language at home. There are things like that that happen, Thomas explains.

There’s sometimes a little lag in the idea of neurodiversity-affirming and Autism-affirming approaches which are just starting to be seen now in terms of language being used in French. So, it’s a unique context to work in, Thomas shares.

Public Awareness of Autism in Quebec

I asked about public awareness around Autism due to the shows created by a couple of famous Quebec personalities who had an autistic son and asked Thomas about the very popular series. Thomas said that I am referring to Charles Lafortune and his partner Sophie Prégent, a well-known Quebec actress, who created the Autiste & majeur Foundation to support autistic young adults. Their son attended Giant Steps from about the age of 3 or so and is now in their adult sector.

The couple developed a number of series that aired over the last many years on different topics where they followed autistic adults in their transition to adulthood to raise awareness. Thomas says they’ve had an incredible impact on public awareness as well as normalizing acceptance of autism as an integrated part of society, also highlighting some of the initiatives that are happening in Quebec that are really exciting.

Autism Partnerships

Next, I marvelled over the amount of fundraising that was done and the number of businesses involved in the partnerships Giant Steps has in the city of Montreal to employ Autistic individuals at equal pay with equal benefits. It seems like it is a good model for other places. Thomas says that the fundraising team was a very small team and that the Giant Steps Foundation has been phenomenal and did a great job. Thomas says that they were presenting a project that was very different in its scope and vision for how autism services could look in Montreal.

They took an approach that integrated, for example, education, employment, research, and community support in one center and are taking an approach to inclusion and partnerships with the community that was very different. For example, they undertook a project with a group of museums in Montreal called Espace Pour La Vie, a Montreal organization that manages the science and nature museums including the botanical gardens, the biodome, and so on. They worked with them to be more Autism inclusive, providing some training and support.

Essentially, Thomas continues, when they take on these types of partnerships, they try to take an approach that is 360 degrees in nature. They don’t just look at, for example, in this case, the client experience or the visitor experience and making sure that they have things in place to help support that, but they’re also looking at their approach to employment, for example, and integrating Autistic employees within their organization, and research. They’ve launched a research project to develop a tool to assess inclusivity and accessibility for Autistics in cultural spaces like museums. Thomas believes that this 360 approach was very attractive to people who donated to the development of the centre.

I commented that I love the project even with St. Hubert, the chicken restaurant, where they have certain days that Autism families can feel more comfortable dining there and just all of the awareness of not just places like museums, but even the restaurants that families go to. Thomas added that they’ve also worked with hotels and in a lot of different sectors on that front.

Changes Are Happening

Given the range of presentations of Autism, with varying support needs, I asked if Thomas has noticed changes since COVID with all of this, because I find that people that I talk to outside of the Autism field really don’t know anything about the neurodiversity movement, yet everybody in the field is totally up on what’s happening. Thomas says that these changes have been ongoing and that it’s been a process, both diagnostically, but also in terms of the language people are using, and the services. He believes there’s still significant challenges.

In some cases, Thomas continues, there’s systemic inertia that happens where even though there’s lots of new thoughts and advocacy and participatory research that’s happening that’s kind of driving innovation, there’s still a lot of the older models for funding, for example, or policy or training. The people leading the new initiatives are Autistics themselves. It’s not just self-advocates, but there’s more of an emphasis more and more on centering the voices of Autistic people and the Autistic community, including families as well, by bringing them into the conversation about services and if they’re really responding to the actual needs of the community.

In the past, Thomas says, when you’re functioning from a highly medicalized model and one that’s deficit-based in looking at managing Autism symptoms, there’s still lots of challenges there. But the fact that people are listening now is great. In the past there were the experts and the experts knew best. Everyone else should just follow what they were recommending, and that is now shifting. The landscape for what Autism services look like is transforming.

Looking Forward

We are seeing the rise of Autistic voices and respect for lived experiences along with the exploding number of adult women being diagnosed as Autistic. We are also hearing the voices of many parents who, for them, Autism very much is medicalized because their children aren’t speaking, they’re aggressive and are maybe in diapers into their teens. Let’s respect the experience of the parents who don’t feel represented, too. I asked Thomas if he sees this split dividing further or coming back around.

These dichotomies are false in some ways, but they do exist, Thomas suggests. At Giant Steps, the approach is neurodiversity-affirming and Autism-affirming, but the students who come to Giant Steps typically have significant support needs. In terms of providing supports to people who have significant support needs vs. celebrating Autism as different, and as different ways that people can be neurodivergent, Thomas believes there’s a false dichotomy that’s been created.

People often use the idea of the social vs. medical model of disability and how they are profoundly different in the way that we think and talk about Autism, but also in the way that we support Autistic people, Thomas shares. There are models of disability like the biopsychosocial model of disability which integrates these different ideas. It’s not that Autism is a disorder to be cured, obviously, but rather, it’s a way of being that requires both personal support and also societal change in terms of how we integrate that, he says.

Thomas continues that there’s a way to take in a person that is neurodiversity-affirming that is supporting their well-being and providing appropriate supports: promoting agency and respecting that there are biological differences. This rejects a deficit-based pathology approach to Autism while emphasizing a shared responsibility for inclusion and support, he advocates. The dichotomy isn’t really necessary to, or helpful in, advancing how we’re thinking about Autism and supports for Autistic people, he states.

What to Focus On

I shared that my presentation at last year’s DIRFloortime® online conference with psychologist Dr. Robert Naseef focused on the “I” in the DIR® model, i.e., individual differences, and having one community that represents all levels of support needs because there is that thread of similarity in the types of experiences and the way the brain works. 

I referred back to the beginning of this episode where Thomas worked with the man who asked about birthdays and shared that my son does this, too, without being a savant who can tell you days of the week from the past. That’s just the way the brains think. We can support everybody and respect everybody’s individual differences and include everybody. I really hope that’s where the future is headed because there’s so much division right now and I think it’s more harmful than anything.

Thomas says that we can take an approach that emphasizes access, rights, inclusion, and well-being as well as dismantle systems that are disabling, all while recognizing that there is incredible diversity across Autistic people and their needs. Whether the speaking Autistic person who’s advocating in the community does or doesn’t speak for the non speaking Autistic child who might have significant behavior challenges argument is missing the point because the Autistic is out there doing that advocacy work trying to advance all of those things around rights which benefit everyone, Thomas suggests.

There are challenges in supporting the agency, self-determination, and voices of large numbers of Autistic people who don’t necessarily have the ability to actively engage in advocating for themselves, Thomas acknowledges. That’s where, as professionals, we have to really work very, very hard to make sure that we’re doing everything we can to provide voice to those people to make sure that we’re promoting opportunities that would develop agency and self-determination for that person and to make sure that the types of supports that we’re providing are developing opportunities for young Autistic people.

I added that this is especially important for those families who may not have the capacity to be supportive for whatever reasons. All of this support costs money and while there’s certainly societal and social change that happens slowly that can help improve that, people are so strapped and don’t have enough money, and the services aren’t there to provide the funding to provide those kinds of services. This is a big hurdle.

Thomas adds that there’s also issues where even when services are provided, they’re not necessarily responding to the real needs of the family or the person. It’s also about making sure we are culturally responsive and sensitive because there’s a lot of intersectionality as well with Autism. All this being said, Thomas says that there’s lots of really cool initiatives and innovation that’s happening across Canada and it’s a community that is still right in the middle of developing and shaping its future.

Final Thoughts

Thomas wanted to include that it’s an everyday thing to be deeply reflective on how we are situating ourselves within this community that we’re trying to support–either Autistic people or people supporting them, including families. Thomas is still in the field because it’s a fascinating community and field to be working in and he’s always learning and growing. He continues to reflect on how we are truly supporting this community and moving things forward at a larger scale. Those challenges are there and that’s part of what drives him forward in his career.

Thank you to Thomas for sharing his experiences and thoughts with us. If you found this episode interesting, please consider sharing it on social media and if you’re in the Edmonton area, check out the upcoming 18th Annual Autism Conference called Building Brighter Futures: Celebrating Autistic Voices and Canadian Leadership in Autism later this month!

Until next time, here’s to choosing play and experiencing joy every day!