Decolonizing Autism Services

Joeita:
I'm Joeita, and this is The Pulse. Autism rates have increased worldwide. It's led some commentators to claim there is an autism epidemic. In Canada, estimates say that one in 66 children between the ages of five and 17 have autism. Yet there is little data about the rates of autism in Canada's Indigenous communities and little is known about Indigenous-centered services and supports. The major contributors to this lack of information? Stigma, the over-representation of fetal alcohol syndrome, and the legacy of colonial oppression. Indigenous children with disabilities, especially those with autism, are caught in the cross hairs of a broken system, one which prioritizes the medical model of impairment over Indigenous ways of knowing and being. Today we discuss decolonizing autism services. It's time to put your finger on The Pulse.

Hello and welcome to the Pulse on AMI Audio. I'm Joeita Gupta. I am a South Asian woman and I have black hair, which is pulled back into a bun. Today I'm wearing a reddish brown sweater with a deep V-neck and I'm wearing it over a black shirt, which... or a T-shirt, which you'll be able to see peeking through the sweater. I'm sitting against a... or behind me, rather, you can see a white background, a white wall, with some gray lettering. You're not going to be able to make out the words, but there are some letters in the background. I'm joining you today from the AMI or Accessible Media studios located in Toronto, or Tkaronto, which is on Treaty 13 lands and subject to The Dish With One Spoon Treaty. And I wanted to begin with an acknowledgement of the land and my location on this land and my relationship to this land as a settler because today we are talking about a deeply concerning and under-reported issue in the Indigenous community.
My guest today is Alison Gerlach who is an assistant professor in the School of Child and Youth Care in the faculty of Human and Social Development at the University of Victoria. Alison is an author of a new study published in the Canadian Journal of Disability Studies. It's called View of Autism and Autism Services Within Indigenous Families and Children in a Settler Colonial Context of Canada: A Critical Scoping Review. Alison, hello and welcome to the program. Thank you for joining us.

Alison:
Yeah, hi. Hi, Joeita, and thank you for inviting me and for this platform to talk about this important topic.

Joeita:
I want to get to ask you in a few minutes about what exactly a critical scoping review is, but just before we get into the nitty gritty of your study, can you explain to us, I said off the top that according to the general estimates, one out of 66 children in Canada is diagnosed with autism. That's what we do know. What we know about the prevalence of autism in Indigenous communities?

Alison:
Well, we don't, and so we kind of knew this going into doing this, the scoping review, but the scoping review really confirmed that the existing ways that data is collected on the rates of autism spectrum disorder in Canada currently don't really capture factors such as children's ethnicity, indigeneity, geographical location sometimes, and so currently there's a real lack of data about the prevalence of autism spectrum disorder amongst Indigenous populations. But there's tensions within capturing that data that we'll probably get into and how it's captured and who captures it and who owns it that are also key issues I think within the settler colonial context of our country.

Joeita:
I think this is a good time for you to perhaps explain to us what a scoping review is and what went into your particular scoping review of the literature?

Alison:
Yeah, so it might be helpful just to say how it all started. One of the co-authors, I want to acknowledge my co-authors on the paper Amarens Matthiesen, Fiona Moola and Jackie Watts, and several years ago, Jackie Watts, who's the Provincial Advisor for a program in British Columbia called the Aboriginal Supported Child Development Program, and her colleague, who isn't on the paper, but Diana Elliot, who's the Provincial Advisor for another program called the Aboriginal Infant Development Program, we had a conversation around their need to have more information to support their programs, to inform their programs, how they can better support Indigenous families who are raising children that have this diagnosis or might have this diagnosis. And so from that conversation, we decided that maybe a good starting point was to look at what is known, what is out there, let's have a look and see what's been published just in Canada, because we know that there are other countries that are doing this kind of work, but it hadn't been done in Canada.
And a scoping review is a way of taking a broad net, in a systematic way and you can see that in the paper, is really taking a broad net and saying what's been published? And we looked at what's been published between a certain timeframe, so from 2011 to 2021 in Canada what has been published around Indigenous children, people, communities, autism services and autism spectrum disorder? And then we went through a method of going through that literature until eventually we got to 19 articles. The thing that makes it critical though, which is really important for the work that I do, and particularly given the structural social inequities that exist in our country, bringing a critical perspective draws attention to issues of power in terms of what knowledge is privileged, what knowledge is silenced, how services are structured. So it really starts unpacking things that maybe are taken for granted that this is the way things are. And so we brought that to the way that we were reading the literature and you can see in the paper hopefully some of the things that were brought to light as a result of bringing this critical view.

Joeita:
I want to ask you if there are differences in the ways in which Indigenous people themselves perceive autism. Do they perceive it as a disability? Do they perceive it as a special gift? Are there some cultural differences at play here?

Alison:
So I think the important thing is to acknowledge the enormous diversity amongst First Nation and Inuit peoples in Canada. So there is no one... there's never one Indigenous view of autism. And so I think that's always important and also important to acknowledge that Indigenous people, probably like everyone, will have different relationships with this label and with this diagnosis, because it does come with certain things which we talk about in the paper. Are there different worldviews? Yes. What are they, do we know? I would say no, because as we talk in the paper, there really has been a lack of research that really is undertaken by Indigenous people involving Indigenous co-researchers as well as participants to really understand what are their views of neurodiversity, what are their views of differences, and then how may those views then influence what kinds of supports, if any, they need or they want to have? What are their priorities?
I was an occupational therapist for 25 years and I was working in a First Nations community and I had two families that I was working with that had children with this, and they were both diagnosed with autism spectrum disorder. One parent in the same community sought out the diagnosis even though it was quite stressful for her to do so because it comes with, at that time, actually enormous amounts of funding. And we had early intervention therapy services in this community that would be privately contracted by the nation. And so this money was important in order to support this mother in supporting her daughter and the kind of support she needed. And her daughter was fairly dependent on her.
I had another family in the community who had a son on the autism spectrum and the diagnosis for them I don't think, my perception is, had an awful lot of meaning. And they were very much accepting him by who he was, by his name. The diagnosis was less important, focusing on his differences was less important. And what they wanted was for him to, and as he was, accepted in the community, strong sense of belonging in the community and this label had less importance. So yeah, I think there's enormous differences and one of the problems with the current system is that those differences are not only not known, but we don't really have, I don't think, the capacity to respond to them and maybe we can get into that a bit more. Does that answer your question, Joeita?

Joeita:
Yes, it does. It's such an interesting perspective. I think I am certainly guilty of it, and I dare say others are as well, of lumping Indigenous communities into one whole and not really recognizing the diversity of experiences. I am so intrigued by your experience with two different parents and having two very different relationships with the diagnoses and with the label.

Alison:
Yeah.

Joeita:
I am hoping to come back to talking about how we might bring more specificity into our conversation, but just before we dive into that or get into it more, one of the things you spent some time talking about in the paper is something that I think many of us have read about, which is called Jordan's Principle. If you could just maybe tell us a little bit about what Jordan's Principle is and how it ties back to views of autism and services around autism in Indigenous communities?

Alison:
Yeah. Yeah, I'd love to. Thanks. So Jordan was a little boy who was born into a family in Norway House, a northern community, Cree community, in northern Manitoba, and he had very complex medical conditions which meant that he needed a lot of hospital care in his early years of life. Jordan got to the point where he was able to go home and be with his family in his home community, but in order to do that, he needed certain supports in place, supports that children living not in First Nations would've been able to access. What unfortunately and sadly and tragically happened in Jordan's case is that there were arguments at that time between who should pay for these services, the province, the federal government, the nation, who was going to pay to support this little boy to go home? Those arguments were never resolved and Jordan passed away in hospital having never lived a day of his life with his family or his community.
That event galvanized a child's first initiative and is still going through the legal system, through Canadian Human Rights Tribunal, to really say that we need to put children first and argue about funding later, which when you think about the reputation that Canada has in the world of being this great democracy and social justice is really appalling that we would argue over money over a child's quality of life and his human rights. But that's what happened. Today we have Jordan's Principle, and Jordan's Principle means that First Nation's children should be able to reach their optimal health, wellbeing, quality of life the same as other children in Canada and this may require that they may need extra supports and services because of our history of how we've treated Indigenous communities and families and children in order to reach those goals. How Jordan's Principle is being implemented in provinces and territories across Canada, again is really variable.
But what it allows nations to do and First Nations leadership to do is to use Jordan's Principle funds, which is being allocated to provinces and territories to First Nations leaderships, to really provide extra services and to fund potentially autism services and support, so early child development services, maybe diagnostic services and whatever kind of resources and supports a community or family may need in order to ensure that their child has a good quality of life and is really getting that optimal early years support. Now, one of the tensions with this, from my perspective, we don't go into this in the paper, is that the services... So Jordan's Principle funding is playing an incredibly important role in addressing longstanding inequities that are results of government decisions and policies. However, the services that they are buying...
So for example, I can speak as an occupational therapist or other early intervention therapists, the services they're buying, the diagnosis that is needed in order to access sometimes services and supports, is still entrenched in this western medicalized view of neurodiversity. And so it's perpetuating potentially this idea that neurodiversity is abnormal, that it's a deficit, that it's something that needs to be fixed, that there is such a thing as a typical child or a typical human, and therefore we need to bring in systems of care that are, essentially when we unpack them, grounded in those beliefs. And so that's a concern for me, but there's also the need for this funding. So there's that tension there and addressing that tension, as we say in the paper, as Indigenous leadership have been calling for many years, is that these services need to be governed by Indigenous people, they need to be designed and delivered by Indigenous peoples.

Joeita:
I want to pick up on something you mentioned earlier, which is the legacy of colonial oppression and the history of racism and the mistreatment of Indigenous people in Canadian institutions and services. To what extent does the research get into the question of whether parents are mistrustful of the service delivery model, especially because of the history of residential schooling and I suppose more recently interactions with the child welfare system. Do parents themselves maybe shrink from accessing these services? Is there a deficit in trust between parents and Indigenous communities or families and Indigenous communities and service providers? Bearing in mind you're very valid point that there aren't a lot of services out there that have Indigenous communities and Indigenous providers at the centre to begin with.

Alison:
In a nutshell, yes. So, the paper, really one of the questions we wanted to ask of the literature that we were looking at is, okay, so how much of this literature draws attention to the relationship between autism services and child protection systems? A few of the papers did, they didn't go in depth into that. But what I know from previous research that I've done with Indigenous colleagues and organizations in BC, listening to the lived experiences of Indigenous parents and providers of services, is that there are enormous concerns that any attention that is brought to a family is at risk of potentially getting involved or re-involved with the child protection system. And so understandably, Indigenous parents can be incredibly wary and cautious about accessing services that are going to bring attention and potentially bring judgments and increase the risk of their child being removed from their care.
But the other thing that's happening, and there needs to be further research around this question cause it's so important, Joeita, we know the over-representation. I think it's getting increasingly well known now that we had the residential school system, we have the Sixties Scoop, and now we have what some people are calling the millennial scoop because we're still not doing anything to reduce the number of Indigenous children going into the child protection system. One of my concerns is, and what we've heard from communities through some studies in BC, is that parents who don't have services in their community are so called voluntarily placing their children in child protection because then the child protection system has a responsibility to ensure that that child, who they are now their guardian, they have to provide services. So yeah, I don't think there's research enough around that and we're not doing enough around that. So, providing-

Joeita:
I know that it's a difficult situation, especially for parents, because when you say parents are voluntarily deciding to put their children... to give up their children or include their children in the child protection system, one really wonders how much of a choice it really is in the absence of no other options.

Alison:
Yeah, it's not a choice.

Joeita:
It's not really, is it? One of the things that I got to thinking about was this overwhelming discourse about the presence of fetal alcohol syndrome in Indigenous communities. To what extent is that a factor, Alison, do we sometimes perhaps mistake fetal alcohol syndrome for autism? Do people tend to get those things confused?

Alison:
Yeah. So we touch on it in the discussion part of the paper in terms of what I think we framed as a colonial myth, which is that fetal alcohol spectrum disorder is epidemic amongst Indigenous communities, despite the fact that there is no evidence to support that. And so I think that speaks to the power of dominant kind of colonial narratives that are still at play in Canada and that do influence families' lives and their decision making and how many children, Indigenous children, that are diagnosed with FASD have a diagnosis of something else. And again, it does go back to, I think, the whole essence of what is neurodiversity and how we label and how then certain labels will get certain services or funding as well. So yeah, there's been some work written around this misdiagnosis with Indigenous children, which is... Yeah, as you mentioned, racialized and really reinforces colonial myths that we have.

Joeita:
You've answered my question in part throughout this interview by talking about the need for services that take cultural specificity into account in that there isn't just one Indigenous community in Canada, every community is different and diverse. You've also talked in some detail about the need for more research, but let me put the penultimate question to you. Where do we go from here? What are your recommendations moving forward to try and address some of the gaps in our knowledge and service delivery when it comes to autism in Indigenous communities?

Alison:
Well, as we say in the paper, as you can tell from maybe my appearance or my accent, I'm a white settler, so it's not up to me to decide and to make those kinds of decisions, but what we've done in the paper is really highlighted the work that's already been done in Canada in the development of an Indigenous early learning and childhood framework and the principles that was developed by Indigenous leadership and stakeholders and knowledge keepers across the country.
And it's an incredibly rich framework that I think holds principles, we've touched on some of them already, that are really valuable in terms of Indigenous governance, in terms of really having the... upholding the rights of Indigenous people, of Indigenous communities, to decide what's in the best interest of their children and how they want services to be delivered and to have that power and autonomy to do that. Yes there needs to be the ability to design programs so that they are tailored for nations, communities and families rather than this one approach, but they also need to take into account the realities of families lives. And so they need to be responsive to what families priorities are, what their preferences are, rather than those priorities being identified perhaps by mainstream organizations or providers.

Joeita:
I think I can-

Alison:
And then in terms of research, I think I've already said... Sorry, Joeita, research needs to be done by Indigenous leaders.

Joeita:
That's a really important point because historically people have researched on Indigenous communities and not with them. I have, I think, time for one last quick question and I'd really be interested in your perspective as to whether reevaluating autism services through an Indigenous or decolonial lens has benefits beyond Indigenous communities themselves. Could we be looking at evolving the delivery of autism services to the betterment of people regardless of where they live and what their identity is?

Alison:
Yeah, yeah. Thanks for asking that question. Great question. Yeah, so I think what we've sort of touched on a little bit is that we've got this negative disability lens that focus on an individual child, what's wrong with them and what we need to fix as far as possible so that they are as normal as possible. That's inherently what we have right now. From the work that I've done and I'm doing, I think often an Indigenous perspective is focused on wellness and it's focused on connections to family and land and community and it's focused on a strength-based approach. And so could that benefit other programs? Absolutely. Could it benefit other families and communities in Canada that are racialized and maybe experience racism with our system and have similar struggles in supporting their children's health and wellbeing? I think so. So I think shifting towards a wellness and strengths-based perspective is something that could benefit many of us, both in terms of parents and how they experience being exposed to such deficits in conversations as well as to children and as well as to how we view people with differences within our society.

Joeita:
Alison, thank you. We'll have to leave it there, but it was a pleasure speaking to you about this very important topic.

Alison:
Thank you so much. Thank you.

Joeita:
Alison Gerlach is an assistant professor at the University of Victoria. That's all the time we have for today. If you'd like to listen to this episode, you can find the podcast on your favourite podcast platform. If you're joining us on YouTube, don't forget to subscribe so you can be notified when we have further YouTube videos for you and please do leave a comment down below in the comments section. You can also write us at feedback@ami.ca or hit us up on Twitter @AMIaudio. Use the hashtag pulse AMI. Our technical producer for today is Marc Aflalo, our videographer is Ted Cooper and Andy Frank is the manager for AMI Audio. I've been your host, Joeita Gupta. Thanks for listening.