Autism research is evolving—and so is the conversation. In this episode of In Our VoICES, ICES scientist Yona Lunsky and CAMH scientist Meng-Chuan Lai explore how research has shifted from a focus on diagnosis and treatment to understanding and improving the lives of autistic individuals, particularly in healthcare. Join us as we dive into the real challenges autistic people face—healthcare barriers, sensory needs, and communication hurdles—and why empathy, acceptance, and collaboration with the autistic community are the keys to building a more inclusive and accessible system.
Dr. Yona Lunsky is an adjunct scientist at ICES and Scientific Director of the Azrieli Adult Neurodevelopmental Centre and Director of the Health Care Access Research and Developmental Disabilities Program (H-CARDD) at the Centre for Addiction and Mental Health (CAMH). Dr. Lunsky has focused her research on the mental health needs of individuals with intellectual and developmental disabilities, and their families. She studies psychosocial risk factors for psychiatric disorders and health service utilization patterns in this population.
Dr. Meng-Chuan Lai is a senior scientist and staff psychiatrist at CAMH. He is also an associate professor and co-chair of the Advisory Council for Equity, Diversity, Inclusion, Indigeneity and Accessibility in Clinical Care in the Department of Psychiatry at the University of Toronto. Dr. Lai’s research focuses on understanding and improving the mental health and wellbeing of autistic and other neurodivergent individuals, across sexes and genders, as well as their families. His research particularly concerns the experiences of female and gender-diverse autistic people and the relations between neurodivergence, sex differentiation, gender socialization, and mental health.
Read the research from Dr. Yona Lunsky and Dr. Meng-Chuan Lai:
Hospital use among autistic adults in Canada
Self-harm events and suicide deaths among autistic individuals in Ontario, Canada
Azrieli Adult Neurodevelopmental Centre at CAMH
Resources:
CAMH Resources: Autism and Mental Health
Misty Pratt
Approximately one to two percent of the Canadian population is on the autism spectrum, and there are around 135,000 autistic people in Ontario. Autism is considered a lifelong neurodevelopmental condition that affects the way a person communicates and how they relate to people in the world around them. In the past, research largely focused on what causes autism and how to diagnose or treat it. Yet, autism is not an illness or a disease, and many people would prefer that research centered on understanding and improving the lives of autistic people. Thanks to advocacy and better awareness of neurodivergence, there has been a shift toward active involvement and participation of autistic people in research, planning, of strategies and policy. On today's episode, you'll meet two scientists who have turned the page on autism research. ICES scientist Yona Lunsky works to improve mental health care for individuals with disabilities.
Yona Lunsky
A lot of the work that was happening at the time, number one, it was focused on understanding what caused autism, as opposed to what autism was causing in our health system. And also, I think, because it's a disability that has a childhood kind of onset, or childhood recognition in optimal circumstances, we tend to think of it as something that only happens in childhood. So a lot of the research was being done just on kids.
Misty Pratt
Joining Yona is psychiatrist Meng-Chuan Lai, who focuses on understanding and improving the mental health and well being of autistic and other neurodivergent individuals.
Meng-Chuan Lai
I think my research direction is led by experiences working with nowhere they are clients or research participants, and then it's their knowledge and their contribution that actually shapes the research direction that we are working on at the moment,
Misty Pratt
Welcome to In Our Voices, the podcast that takes you beyond the data to meet the people and hear the stories that help shape health and health care for all of us. I'm your host, Misty Pratt, and I'm one of the people behind the data who make the difference at ICES a health research, data and analytics institute based in Ontario, Canada. ICES staff, scientists and partners are on a mission to make health care better and people healthier. In this podcast, we share our stories in our voices. A note that the opinions expressed in this podcast don't necessarily reflect those of ICES.
Misty Pratt
Welcome Dr. Yona lunsky and Dr. Meng-Chuan Lai to In Our VoICES.
Yona Lunsky
Thanks for having us.
Meng-Chuan Lai
Thank you so much.
Misty Pratt
So great to have you here. So I'll start with this question. Autism means something different to everyone. What does it mean to you? And Yona, maybe I'll start with you.
Yona Lunsky
Even the more important thing, I think that, you know, the definition you kind of provided just before captures maybe how I understand autism, or how I try to speak about it. But it's important, I guess, to note that how I understand it has changed so much in the last, you know, 20 to 25 years of my work in the area and and probably it'll keep changing. I think it's about a group of individuals who we're trying to understand and support better, who experience the world, maybe in a different way than I do, and who have really struggled, I think, when it comes to getting the health care that they they deserve and that they need, which has, you know, significant impacts on how they manage with their day to day lives.
Misty Pratt
I can add on to that. So historically, I think autism, the same as other medical conditions, was defined as a medical disorder or a medical condition. So there was a prototype that was described by different clinicians almost a century ago, and we know for sure autism exists well before that for sure. Tthere were autistic people in history, throughout lifetime and throughout the histories in human population, for sure, but it was like first described in a medical way in the literature by clinicians, as characterized by deficits of social communication and also for behaviors. So if you look at the definition of autism in the medical clinical literature, it was described as a disease or disorder as an illness, right? That's the historical root of that, and for sure, as other medical conditions, the definition of that evolve over time, and this evolution is primarily due to better understanding of things, but also more experiences of clinicians and of people who autistic themselves, vocalizing their experiences. So the definition of autism does evolve over time, like Yona said, and many people would say that the definition of autism nowadays is broader than the definition of autism maybe 20 years ago, and even broader than 30, 40, years ago, and much broader than the original prototypes. I do want to highlight that despite that, there is a broadening of the definition. There is still some internal coherence or consistency regarding what autism implies, and that is, I think, is what you have highlighted, which is the social communication differences and how people perceive the world and respond to that differently.
Misty Pratt
And so should autism then be framed as a disability because you mentioned, it was framed as a disorder or an illness. Is disability also a good way to frame it?
Yona Lunsky
So I think it depends on how you frame or understand disability. You know, we have medical models of disability which, you know, think of disability really as a disorder, and then we have social models of disability which think of people being disabled by, you know, what's around them and what people do or don't do to support them. So when I think about the word disability, I personally don't see it in a bad way. I think about the disability community. I think about the reminders of things that we need to be able to do to support people who learn differently, move differently, hear differently, see differently, or have barriers to experiencing the world in the way that someone who does not have a disability does. And I think that autism is very much part of that broader disability community. So I you know some people say, maybe we should talk about difference and not disability, but I think if we do that, we might forget the fact that people are disabled, right? And part of maybe the reluctance or concern about people being considered to have a disability is because that's a bad thing, and that's something that makes people feel othered or not as good as other people, not as valued. But I think if we think about disability as a way of identifying and also as a reminder for all of us of things we need to do, then I think that's that's really important. And I think autism and people who are autistic want to be part of that broader disability community and identify often as part of that. And that also makes the condition that is somewhat rare actually part of a large group of individuals who all have rights to certain services and supports, especially when it comes to health care, and that's my view. I think everyone has different views, and that's also really important to keep in mind.
Misty Pratt
Absolutely.
Meng-Chuan Lai
There's an increasing awareness of neurodiversity as a phenomenon or affect existing human population, right? There's a misunderstanding of neurodiversity paradigms or neurodiversity views, suggesting that maybe neurodiversity views would be against the idea of autism as a disability. I've got the opportunities to speak to and work with quite a few neurodivergent community members, and I think the common idea that I've gotten or from the things that they've written, all suggest that, as you want to said, it is actually not the case, because the neurodiversity perspective is really an integration of the medical and the social models of disability. The key there is that we recognize the differences of individuals, and that's existing across our human society. However, people can be disabled by many different origins, or actually a combination of many different things. And neurodiversity movement is really a movement as part of disability movement, to highlight the inequity faced by this population for a very long time, and trying to find ways to support people who are autistic or neurodivergent. So recognizing disability being part of the experiences really highlights the inequity that people have faced. And disability is not a bad word or, you know, people are not feeling shameful of being disabled. You know, it's really highlighting the equity and the basically, even the stigmatization faced by many people.
Misty Pratt
And so what are those myths or misconceptions that other people have of autistic people?
Meng-Chuan Lai
There are many, and we'll be talking about, for example, the health access inequity faced by autistic people. We have been pondering about the presumptions that has been quite prevailing or perceived quite widely by clinicians about autistic people lack empathy, or do not have the ability to understand others' thoughts, or do not care about others' thoughts or emotions. But in fact, I think there are more and more reflections showing that you know it is actually not the case, because non-autistic people very much likely could also misunderstand autistic people because of differences in thinking, communicating and expressing oneself. So there could be misunderstanding about how autistic people think, feel or express themselves that makes it hard for autistic people's experiences being properly understood and interpreted. So there could be the kind of stigmatization related to their thinking and communication styles, and also related needs being not recognized or not met.
Misty Pratt
And that would be hard in a healthcare situation where you're going in and trying to get help for something, and perhaps being misunderstood or not able to communicate in the way that the healthcare provider understands. Okay, why did you both want to turn the page on autistic research?
Yona Lunsky
It's an interesting metaphor, Misty, right? Makes you because it sounds like there's one page, and you turn it and then it's different. But really, I think, if I think of a book, right, I think about all these different pages that you keep turning, and the fact that it's sometimes like, you like, you know, you like, flip to another chapter, it's a bit more of a radical move, right? And sometimes you're just turning one page at a time of a very long book. I feel probably like I've just been gradually flipping pages, and the kind of guided sometimes even, you know, obviously, by other people who do work in the field, and importantly, by autistic people, by families of autistic people around which, which chapters to go to, and when and why. But I'm not a basic science researcher. I never, like, even took biology or anything when I was in high school. I've always been interested in things that are right in front of me, and sort of, you know, working as a clinician, as a psychologist with with autistic people, and just kind of studying our health system and how things work, I was interested in understanding, you know, what to do with particular kinds of practical problems and things that the people in front of me were experiencing, right? So a lot of the work that was happening at the time, number one, it was focused on understanding what caused autism, as opposed to what autism was causing in our health system. And also, I think, because it's a disability that has a childhood kind of onset, or childhood recognition, you know, in optimal circumstances, we tend to think of it as something that only happens in childhood. So a lot of the research was being done just on kids. So I work with adults, right? And I can understand causes, even if I tried. So I wasn't really interested in the biology of autism or what was going on in the brain. I just wanted to know, well, how do we kind of just listen to people and do things that are important to them, especially, I think, once they become adults, when there's less stuff, for example.
Misty Pratt
Meng-Chuan, do you feel similarly, or do you feel that you have turned a page on autism research?
Meng-Chuan Lai
The same as Yona's comment, I don't think we are. We're deliberately or intentionally trying to turn the page. I think we are part of the evolution of, you know, and among many people, and trying to make things better for our communities, right? So the same as Yona, I think I'm lucky enough to be a clinician, which means that I work with people who experience mental health issues, and I work with people who are autistic. So my own research trajectory is also shifted, based on who I work with. So I remember, you know, when I was a trainee, I primarily worked with kids, and not surprisingly, that was, like more than 20 years ago. So that was like mostly boys and to teenagers. So I didn't think too much about adults, because, again, at the time, autistic adults, or, you know, we actually call them adults with autism at the time, the stereotype was that they mostly have intellectual disability, and, you know, they are, you know, in a much more difficult situations, and they may not be so prominent in mental health care settings because they're actually served by different sectors of our society. When I started to do research, I was lucky enough to be positioned in this consortium, working with autistic adults and primarily working with women and, later on, gender-diverse people, and the first thing I've learned was that this population isn't exactly the same population of autistic people that I know before, but they are something that's very consistent across them, but they look different. And that really stimulates me into working with adults, especially women and gender-diverse people, and especially those who do not have intellectual disability at the time, and that was like about 15 years ago. So I think my research direction is led by experiences working with no matter their clients or research participants, and then it's their knowledge and their contribution that actually shapes the research direction that we are working on at the moment.
Misty Pratt
And so what are autistic people telling you, then about their experiences in the healthcare system?
Meng-Chuan Lai
So there are many things. I mean, there are many unmet needs, right? So the unmet needs definitely include very much increased mental health burden. And you know, Yona and I have done some work together and separately, focusing on different ways of capturing mental health related service needs and burden in the population. And it's quite obvious that many things, all the way from anxiety, depression to substance use, to severe mental illnesses, to emergency department use, to mental health hospitalization, all the way into premature mortality. I think all these risks have significantly increased in the Canadian population, but also beyond that. We do know that this is the same trend has been observed. And across many populations around the world. Also, I think many clinicians would like to help, and definitely are capable to help and to support autistic people, but there needs to be more work to be done in terms of bridging between the lived experiences side and the clinician knowledge side, because I think they should be informative to each other, but sometimes because of systematic issues or because of different conventions that these information does not flow back and forth, so that may result in miscommunication, and also even access issues as well.
Yona Lunsky
You know, a lot of the barriers and things that people come across around mental health care, I think happened, like you say, in all types of health care. So if we think maybe one issue is kind of the the health care setting, right? So how adapted is that setting to person who experiences things in different ways, who finds certain types of things very stressful, whether it's lighting or sounds or someone right in their face, or time pressures, right? You have so much to do, and you've got 10 minutes to get it done. Across healthcare setting, there are barriers around how the healthcare experience actually, physically is set up and then kind of emotionally set up. And also healthcare communication is big across all those settings. So it will be really hard for someone struggling with a mental health issue, to express things that are going on for them. But that's also going to happen, obviously, in a frenzied kind of emergency department, right? Or even in an inpatient hospitalization, or when you're, you know, getting an MRI. So how you communicate what's going on with you and how it's understood, I think, cuts across settings and across ages, right? And I think your point, Meng-Chuan, about, you know, healthcare providers wanting to do a good job and maybe not knowing exactly how to do that, one thing that strikes me is important. We've talked about how our understanding of autism keeps changing. Well, it's still a small proportion of the entire population, you know, and we get to study it and think about it all the time. So our our learning is changing all the time, but everybody out there providing health care might feel like they're up to date, but actually the way we thought about things 10 years ago is not how we think about things now. And I would say I've made changes in how I do my work, even from five years ago. So there's a need to realize that even if you think you know something, maybe you could learn it a bit differently, right? And there are ways to change. And I think so. On the one hand, some people don't realize things have changed, right? Or they're so worried to get it wrong that there's kind of like a reluctance to do anything, because you know you don't want it, which is, I mean, it's good to be aware that you could cause harm or that you're doing something wrong, but it's not good to just stay away from figuring out how to learn or provide or even asking what would make a difference for you today. I don't you know I'm trying, but I realize I might not be getting it right. Help me out here, is a really great thing to say, and very can be very well received, right? But I think some people are really scared to do it wrong, and so maybe the OPT just not to do it at all, or not to make changes when they could.
Meng-Chuan Lai
I want to build on Yona's point here, especially on the provider side, because also providers working in systems. So there are systematic pressure or conditions or setting, you know, basically setting restraints or limitations for what providers can do within that limitation. And I think that's something that we need to work together to address it. For example, Yona mentioned this very important point of getting the messages to the clients, especially autistic clients, in a clear and straightforward way, and making sure there are enough time for people to process the information. This is not always possible in a healthcare setting. I do have the chance to work in the Canadian healthcare setting, but also in other countries. And have to say that the Canadian health context is fairly good that, for example, you do get quite a bit of enough time to work through issues. Let's say in a mental health setting, like even in psychiatric outpatients or emergency department care settings. But even with that general good amount of time, this may not be appropriate to address the needs or get the message to the autistic people who's needing the care properly. Things need to be done there to make it more efficient, to make it more straightforward and give enough time to process things, even with the pressure, the solutions lie in multiple levels. So it is very important for us to think about what each of us can do. So there are something autistic people can do something, the families can do something, the clinicians can do something, the managers can do, something actually the legislators can do and something the government should do, right? So I think we need to think about all these different levels together, rather than focusing only on one component, although we have to start with some component at a time, for sure.
Misty Pratt
What strategies have been effective in breaking down barriers to care.
Meng-Chuan Lai
The strategies can be tailored to different part of the healthcare system. So for example, from a clinician's perspective, getting to know what autistic people's experiences in the care setting might look like would actually be very helpful for the clinicians to choose what to say, what to do, and what could work better for autistic people, because, again, many clinicians are not neurodivergent themselves. They may not be able to understand what a noisy environment brings to the, you know, to the person's stress level. They may not understand that some autistic people do not show much facial expression when they're in pain, but actually very, much in pain. So you need to be aware of the possible discrepancy, quote, unquote, from your perspective, and really acknowledging what a person's experiences might look like. So there are some nice model that has been proposed by some autistic people, and I'll leave that to Yona to add on. Maybe that's a good idea to build on what we can do there for autistic people and family members, you know, it will be good to collaborate with the clinicians and care providers, and this actually require care provider support in providing more predictability of things, right? So, for example, what might happen for a particular care what does it look like in those situations and many family members and parents would say that once things get prepared, it typically would work better than unexpected ones, right? So this is not always possible, but as much as we can those kind of preparation and you know, making things more concrete and laying out the step wise procedures for things would be super helpful making it more predictable, then making it more predictable for everyone. And this actually helps for every single person, and especially for autistic people.
Yona Lunsky
There's a really nice model that was proposed just a couple of years ago by a group of autistic doctors, actually through an organization called autistic doctors International, published in a nice journal, and it was the acronym was simple, SPACE, right? And SPACE stands for sensory needs, predictability, acceptance, communication and empathy. So that's what each letter and the acronym stood for. But also they, they made sure to talk about quite beautifully, that actually it's not just the physical space that we're thinking about. There's also that processing space, like the time sometimes that it takes to sort of understand and do certain things, and also the emotional space, right? It's this is a big thing when you're in health care that's incredibly stressful and it's impacting you emotionally, right? So we need to give space in all three ways. So I think that's a really helpful acronym for people to remember, and it applies across healthcare settings. And importantly, it didn't come from me or Meng-Chuan. It came from people who studied and worked in health care, but also who experienced issues as autistic people in using health care and met with and worked with many other autistic people who had, you know, similar kinds of experiences. So I think when I think of solutions, you know, the big theme is not just space, but working together with people who experience using health care, as opposed to driving it entirely by people who deliver health care. So that's probably the most important thing that we need to do. I think, you know, a lot of what, what I do is kind of study,. how do we implement changes in health care? You know, for this population and for other populations. And I think when, when you make the ask sound really big, it's very easy to say, well, that's not my job, or the system isn't letting me do it. So I think we have to show how changes are doable. And as you said, Meng-Chuan one saying that all of us can take a bit of responsibility for, and we have to be able to grab the information really easily. So that's why I like acronyms like space, because we have to be able to find something off the shelf without working too, too hard. Because again, healthcare providers don't see this group day in and day out, unless it's what they're specializing in, or if they do see them, they don't necessarily realize it, right? So we need to make sure, because you learn something and then you forget it, right? So how can you find that information again? How can you just make it part of your practice? So we have to make things accessible to healthcare providers. And I think also we have to, we have to start with people early. So, you know, I've done work teaching in health care for many years, and I'm much more excited doing my teaching now with people that are entering the field than changing the ways of people who've been working for a very long time, maybe with a different way of understanding the world. And you know, I think when we work with people who are entering the field now, they've grown up with autistic people in their families, in their schools and their sports and their arts, they're ready to make changes and to include this population as part of what they do. And it's not such a big ask for them, right? So I think starting with really nice early examples of things in healthcare training is really important, and then finally, building on what you said, really think of it as something that we're all kind of doing as a big team, right? Health care often is delivered in a team-based way, but members of that team really include autistic people and families and allies of people who are supporting autistic people and getting health care.
Misty Pratt
And as you describe the SPACE acronym, I feel like it would apply really well to the mental healthcare system in general, that there is a lack of communication, a lack of empathy and understanding. So are autistic people facing a dual stigma in that, you know, there's the stigma of being autistic. But then there's also the stigma of mental health care in general, and the fact that the system itself is not serving anyone's needs very well.
Yona Lunsky
Double stigma, sometimes triple stigma. There's all kinds of stigma that go on. And also, you know, to your point, a lot of the things that would improve things for autistic people would also improve things for other groups. And I think that's a really important takeaway that I would want people to think about. So when we make things more accommodating, when we think that people experience things in different ways, that what we see in front of us isn't always exactly what's happening underneath, you know that just helps us give better care to everyone.
Meng-Chuan Lai
I think one key point that the neurodivergent community often reminded us is that universal design, which is a term that describing ways to increase accessibility to anyone to something. It was initially in architecture, so like, increasing accessibility for anyone into a building, for example, would benefit everyone, not only the person who's most disabled. And I think, like you said, Misty, that exactly the same thing like you know, in improving communication, increasing you know, the awareness of the sensitivity of the person you know, increasing in predictability. These are all part of things that could improve everyone's healthcare experience, right? So by this particular difficult for autistic people to not having these available to them, because exactly as you said, there are multiple layers of challenges, and many of them originated from stigmatization that they have been facing. So I think this is where really the kind of intersectional lens is particularly useful, because when we are seeing individual who's having mental health difficulties, we also need to try, at the very least, to see what might be the layers of things that's actually contributing to the person's current presentation. And to be honest, this is not very intuitive for clinicians, because in many cases, first of all, if we are in a situation that we're pressured by time, stereotype works the best, right? That's how human works. I mean, how hard our brain, our mind works. So it's very easy that we react by stereotypes. So it's almost like we have to be deliberately and intentional to reflect on and hold on and to think about it before, like intuitively respond to a situation, right? And I think creating that buffer time or space is really helpful to be more aware of what might be happening for the person.
Misty Pratt
And just going back to what you said there earlier, about having an intersectional lens. So Meng-Chuan, you published a study using ICES data, which showed a highest risk for females for suicidal thoughts or self-harm that leads to emergency department visits. What is the reason for these differences based on that intersectional lens that you take?
Meng-Chuan Lai
So this finding from the study that Yona and I are both part of ask the question, what are the self-harm risks in the Ontario population, stratified by assigned births, but also by whether one is autistic or not. And as you said, Misty, the finding shows that autistic females assigned birth actually shows the highest risk of self-harm across life stages, and that leads to emergency department visits. And this is really something that we're still grappling with, because, as you know, that population level data can only tell us as much. So what we know there is that many of these self harm risks are maybe contributed by the coexisting mental health condition that they have. So essentially, psychiatric conditions contribute significantly to one's risks of having self harm in their lifetime, and that has led to emerging department service use. But that may not be the only reason, because there could be other reasons. For example, it could be because of other intersectional factors that the autistic female population particularly experience. We don't have the data, but we do know, for example, autistic people are more likely to experience victimization or trauma. And we do know that in general, like the female populations, are more have more experiences of interpersonal victimization. So it is possible that when one is autistic and also female assigned birth, the risk significantly increased. And we do also know that victimization can lead to self-harm, mental health and others, you know, vicious cycle about all these really stressful experiences. So that could be one explanation. There are people that we work with who are autistic themselves, sharing with us that when their autism was not recognized or diagnosed, they may actually be under a lot of pressure stress in their life, and also their loss of misunderstanding, and they may not be receiving the proper support that they could benefit from. So those may also lead to self harm risks. So these are all the possible factors. But again, we're speculating on these. I think this is the kind of work that we need to do in the future to tease apart the whys and what might be the contributing factors, because that's where you have the opportunity to prevent things from happening, or to intervene if it you know if it does happen. So that's ongoing work.
Misty Pratt
And that brings me to my next question, which is, what should we be looking forward to in the next few years in terms of autism research? Well,
Yona Lunsky
there are many different kinds of research that can be done. I mean, I'll say, as someone who's worked with ICES data for a long time, that you know, the better we are at identifying this population within our ICES data, the more we're going to learn. So because how we understand autism has been changing over time, who we've been capturing is also changing over time. So the more sources of data we have that help us recognize who autistic people are, that's going to really inform what we do. But then what we study, we've been focusing some of our discussion today on mental health care, but we should be looking at, you know, there was a study that looked at what happened around transplants in autistic people and people with other developmental disabilities. It was done in the US, you know, a couple of years back. So, so whether it's, you know, palliative care and cancer or kidney dialysis, or, you know, different surgical interventions. So so we can really expand. We should be studying in everything we study in health care. We should be asking the question, well, how does this impact autistic people? And then also, we can be combining. So, you know, Meng-Chuan, we you should have talked about how we have we find something with our admin data, and then we say, well, what does that tell us in terms of our qualitative experience, or what people tell us in another context? And we sort of just been adding those things together, and we can continue to do that, where we look at the same topic or issue using different sources of data. But another thing we could do that I think would be really important, is we can actually link those things together with actual people. Do you know what I mean? So if we think that we're not really capturing everyone who's autistic through some of the data sets that we have, we could follow a group of people who are autistic and understand what happens to them using their administrative healthcare data, right? So then we have information on their subjective experience, potentially clinicians experience of something, you know, what we're seeing in a medical chart, and then what we're seeing in terms of broad-based health care, you send costs, right? So bringing all those things together, I think, is really important.
Misty Pratt
How can health data and research like that conducted at ICES play a role in the future of autism research?
Yona Lunsky
We often use health data to identify a problem, but we can also use it to look at how things make a difference, right? So if we have a new intervention, let's say we do some training and we're applying the SPACE framework to how we deliver health care with a certain region of people. Well, how does that change how health care is delivered over time? Right? Let's say we give more resources or supports to autistic people and to families so that they're better prepared when it comes to using their health care. How does that impact things right? So we can do more intervention based research with the population. And with the population is a really important piece as well, I think, in terms of where we need to go. So sometimes what we do in our work is we study our data and then we say, How does this fit with your experience? We can actually really ask those questions together. It takes more time, right? But work through the project together and continue to have more of that back and forth, I think, with the autistic community and the autism community to kind of figure out how, how to make health care better.
Misty Pratt
It sounds like going back to when we first started speaking about how, you know mental health is health, right? So health care in general should be including mental health in that, and that we often are not looking at the social side of things. And that, you know, when we have this medical model or just medical data, if we're not including that social side into this definition of autism or how people experience the healthcare system, it sounds like that's what we need to be doing is combining both of those sets of data.
Meng-Chuan Lai
If I can just re-emphasize the point, I think it is really about getting, like, a multi-level understanding of things. So I see, you know, population-based data as like, kind of showing us the picture of the forest, right? So get to know, like, the map of things, and there are different kinds of maps that we can link them together. So, you know, some of them could be the medical ones and could be social ones. Some could be educational ones. Some could be others. So demographic. So we have different ways to describe the forest, but we also definitely need a complimentary view, which is to know what the tree looks like. And, you know, to know what like a group of tree, you actually grow differently in this part versus the other, and the whys of that, right? And then ultimately, we want to make sure that all of the trees are growing properly, right? That's an analogy. So we need to know, you know, the experiences of people who grow the tree, and to know what are the ways to improve the growth of the tree and the prosperity of the land overall. So I think it's only when, when we have the kind of ability and data to the multiple levels of understanding, to help with the multiple levels understanding, that we can get to the stage of having a more holistic picture, from the forest to the tree.
Misty Pratt
I love that analogy. Thanks. So I want to thank you both so much for being with us today, for joining us on the podcast and for talking about this really important issue. And this has been a great discussion and timely in light of the National Autism Strategy, which was released in the fall of 2024 and I think health and health care were two central issues in the report, as well as the value of data and placing autistic people at the center of decision making.
Misty Pratt
To learn more about ICES research and analytics, visit ice.on.ca and navigate to our publications page. There, you can search for specific topics such as autism and find some of our published work to discover more about the research of Dr. Yona Lunsky and Dr. Meng-Chuan Lai. Check out the Azrieli Adult Neurodevelopmental Centre at the Centre for Addiction and Mental Health, also known as CAMH. We'll link to all of this, plus more in our show notes.
Misty Pratt
Thanks for joining me for this episode of in our voices. Please be sure to follow and rate us on your favourite podcast app. If you have feedback or questions about anything you've heard on In Our VoICES, please email us at communications@ices.on.ca and we'll be sure to get back to you, we might even share your feedback on a future episode. I'm Misty Pratt and wishing you strong data and good health!