Interview between Speaker 1 (Meg), Speaker 2 (Dr. Kristy Coxon), and Speaker 3 (Dr. Caroline Mills)
Episode 58: When Autistic Kids Become Adults – Authentic Participation & Community Access
[Introductory note]
Hey, it’s Meg. I know that if you are a professional and you’re here, it’s because you want to work in a way that has a positive impact on the self-identity and well-being of your autistic clients. And at Learn, Play, Thrive, we really want to support you on that journey because the way we do our work impacts kids, families, communities. It really matters. And it is so hard to swim against the current on your own. That’s why we’ve put together another huge continuing education summit, and this one is for occupational therapists, that will give you the tools and confidence to go deeper into your work with a neurodiversity-affirming lens. I want you to leave the summit just buzzing with confidence and enthusiasm for your work, and connected to a community of like-minded therapists. We have a truly engaging and brilliant panel of neurodiverse professionals teaching on everything from disability justice, to AAC, interoception, regulation, supporting kids who learn language through echolalia or delayed scripting, and even strengths-based approaches to literacy. Yes, that includes what we should be doing instead of drilling letter formation and rewriting lines with our autistic clients. There are only a few early bird spots available, so head over now to learnplaythrive.com/summit and be a part of this huge culture change in the therapy world. The OT summit takes place in January of 2023, it’s registered for AOTA CEU’s. All of the talks will be recorded and on demand. Then, go tell your friends after you’ve registered, because we’re giving $500 to the therapist who refers the most people because we want to make a huge impact on the OT field with this event. That’s learnplaythrive.com/summit.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘autistic person’ rather than ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 58 with Dr. Kristy Coxon and Dr. Caroline Mills. This episode is all about autistic people’s meaningful participation in daily life across the lifespan, including as they enter older adulthood. Our guests today are deeply interested in community access, authentic participations, sensory processing, and self-advocacy. They study community access in ageing communities and help us apply the lessons of their research to our work with autistic people of any age in any setting.
I’ll tell you a little bit about our guest today. Dr. Kristy Coxon is an occupational therapist with a PhD in public health. Kristy has over 20 years of experience in clinical practice, education, and research, and is currently a senior lecturer at Western Sydney University in Australia. Kristy has worked clinically across the healthcare continuum with a special interest in aged care. Her PhD focused on community mobility and participation in older drivers. So, recently, Kristy has become involved in research investigating the development of community mobility skills in young autistic adults. This led her and her colleagues to develop a program of research exploring the concept of ageing well when you are autistic, and what that means for autistic people themselves. Meeting the needs of older autistic people in the community is the driving force behind this research.
All right, coming from the other end of the lifespan, Dr. Caroline Mills is also an Australian occupational therapist, but she mainly works with autistic children and young people. She has a PhD from the University of Sydney where she focused on school-based sensory processing interventions for autistic people. Caroline is a lecturer in occupational therapy at Western Sydney University and was recently awarded an early career research fellowship to support her ongoing research into novel sensory processing interventions. And when you put Kristy and Caroline and their research and what they’re learning from autistic people together, the output of that is so interesting and so impactful for our work supporting autistic kids who will grow into autistic adults and hopefully into autistic older adults, or to those of us who worked in any setting with adults where we will necessarily support autistic clients. Here’s the interview with Dr. Kristy Coxon and Dr. Caroline Mills.
Hi, Caroline and Kristy! Welcome to the podcast.
Caroline:
Hi, Meg. Thanks for having us.
Kristy:
Thank you.
Meg:
Yeah, it is such a pleasure. We were just chatting a little bit before I hit the record button about how little research there is out there that truly centers autistic voices and autistic well-being. So, when I came across just the title of your research, I immediately was like, I would really like to connect with these folks. So, I’m glad we’re here connecting. And I want to start with your stories. Let’s start with you, Kristy, and then you, Caroline. To get us started, can you tell us, tell us about your work, your previous work. What led you to become interested in researching ageing for autistic people?
Kristy:
Thanks, Meg. Well, in my background, I’m an occupational therapist by background and have been for several decades now. And I’ve had a career working primarily in rehabilitation and aged care clinically. And then, also a research career where I’ve really focused on researching the needs, wants, and community participation of older people. And in particular, how people transverse their community environments. So, whether that be able to drive, or use public transport, or how people get around, and how they engage in occupations in the community. So, I have done quite a bit of research in this space, looking at older people. In particular, in Australia, we have age-based licensing. So, looking at how people in later life are able to navigate their community spaces.
This led to further research with a particularly interest in driving and community mobility, working with a group of researchers looking at how autistic young people learn to navigate and negotiate and transverse their community spaces, so that they can participate in community activities. And that might be things such as work, but also how you transverse different spaces for social gatherings, what preferences young autistic people have for participation. And so, that’s where my interest started in, in helping and listening to young autistic people developing these skills. And then, Caroline and I have been working together and it became a terrific synergy. And I’ll let Caroline talk in just a moment, because Caroline comes from a very strengths-based approach in working with children with autism, and I came with my experience with older people, and with autistic people in terms of driving mobility and community participation. And ever since we had an initial conversation several years ago, we’ve embarked on this program of research that we focus on what does ageing well mean for older autistic people?
Meg:
I love how you center these questions that you’re asking, and listening, and learning from. Not ‘here’s what ageing well means, here’s what it looks like, how do we make you do it’, but you started by asking these questions of what does community participation mean, what does ageing well mean to the Autistic community.
Kristy:
Absolutely, and some of our findings are really interesting in terms of being very, very careful not to overlay what a person might feel is typically expected of a young person or an older person in terms of community participation, because that can look very different for all different people, not just neurodiverse people. But if you take the idea that there’s one typical way, then you’re going to fall short as a therapist every single time?
Meg:
Absolutely. I am very excited to get into the meat of your research in a few minutes. I want to learn a little bit more about you first, Caroline. Tell us your story.
Caroline:
Yes, thanks. So, I’ve been an occupational therapist for about nearly 20 years now. Most of the time has been in Australia, but I’ve also worked in the UK and in China. And most of my experience has been with supporting children. And I probably spent 95% of the children that I saw across my practice career for the 15 years or so that I practiced were autistic children. And I just, I met them and just thought they were the most fantastic and interesting people. And I just focused my practice on supporting those children. And I worked in autism-specific school settings. And a lot of my work was around supporting participation in school, but also supporting sensory processing, and what it means when a child has difficulties participating because they have differences in sensory processing. And my approach to sensory processing was not to pathologize it, per se, and to say that your brain needs to be changed or fixed, but to say, let’s help you to understand what your sensory processing is, and how can we adapt the environment, or how can we adapt the tasks to enable your participation.
And it’s always this balance in school, because there’s a part of school that is kind of learning the ropes and learning, you know, kind of what the expectations are, and learning to prepare you for adulthood in terms of what those expectations are. But for autistic people, what I’ve seen is that sometimes it’s happened in a way for them that is very damaging and kind of soul destroying, and saying, “There’s something wrong with your brain, you need to change the way you behave, you need to, you know, not move your hands in this way, or move your body in this way, or express yourself in this way.” So, we have to shape them into healthy adults. But we have to do it in a way that’s not soul destroying for them, and that affirms kind of, “Here’s who you are, and here’s why you’re great.” And here’s the big wide world that we live in, and how you can kind of get by in it. So, that was the approach I took with children.
And it’s very interesting that I never people like Kristy in practice, because the aged care people don’t work in schools, because it’s not an aged care space. So, it’s really fantastic to come into the university and work in a team of OT’s, many of whom have spent their careers in the adult space, and start to use this adult-based sort of expertise in occupational therapy to reflect back on how we can use that wisdom to support children and adolescents to prepare them for their adulthood and what that’s going to look like. Rather than saying, ‘Here’s a way you have to do it’ but it’s a looking forward to look back. Which is something we don’t often do with children, because we’re right in there with them, doing what they’re doing at that time. So, it’s a very interesting process. So, it’s really great process for us to come together on because we are in our silos of these. There’s some very brilliant professionals out there who support children and young people and have done for many years. And then, there’s some very brilliant professionals out there who support older adults and have done so for many years. And they don’t come together. And we’re finding, in the space of supporting autistic people, that it would be great to bring those two groups of professionals together to see what good outcomes could benefit for autistic older people.
Meg:
Of course that would be good, right. When you lay it out like that, that’s just an of course. Children become adults, adults become older adults. And I love how you are drawing on what you call the wisdom of folks who work with an ageing population. Because there is less of an inclination to try and change who people are at that stage of their life as opposed to when they’re becoming. We professionals often forget to respect their authenticity and their autonomy, and we try to shape them from our very, very limited perspective. I love your description of this teaching autistic folks to mask as ‘soul destroying’. That’s a perfect description of it. I’ll say for folks who really latch on to your comment about sensory processing, we did have Dr. Winnie Dunn on the podcast in Episode 16, and it was, of course, a really lovely interview about the difference between trying to change people and trying to advocate and accommodate for their needs so they can participate comfortably in their environments. So, it is really interesting to hear y’all talk about how you brought your two worlds together. I want to hear about your study. Tell us about your ageing well study. What’s the design of it? What did you think you were gonna find? What are you finding?
Caroline:
Yeah, so what we decided to really embark upon was, I suppose not even a single study, but a program of research, because there are so many kinds of individual studies to do with this. And we’re sort of embarking on that. And the first study that we’ve done is a scoping review. And we reasoned that the journey of thousand miles starts with a thorough literature review. So, that’s what we’ve done. And we went through a process of scoping, which is a process of systematically searching literature, and published literature, and textbook articles, and policies, and guidelines, and sort of throwing in it really wide and seeing what comes back in relation to autism and ageing. And what came out of the initial screening was that huge numbers of studies didn’t fit our age criteria. So, we had a criteria of 50, 50 years and older. And there were huge numbers of really great studies, which were eliminated because they didn’t fit that age criteria. And how many did we screen, Kristy? It was about eight, over eight thousand?
Kristy:
- Over 8000 articles were screened in this process. And the key thing that we’re looking for is participation. So, we’re not interested in, you know, what literature might be there about how people perceive pathologies in later life, or declines in cognitive function, or —we’re interested in the person as they are, and how they participate, and how they want to participate in everyday life. It’s probably our occupational lens that comes from our years and years and years of training.
Meg:
But thank you for bringing us back to that. Because I think in our practice, we can get so far away from it. And I always like to say, authentic participation in daily life, right? Because when we lose that authenticity, what are we doing? What kind of participation is that if it’s participation that isn’t meaningful and authentic? So, you started with thousands of studies, you didn’t find a lot that centered participation and focused on autistic folks. What did you find?
Caroline:
We found 23 records all together. And most of those were peer reviewed articles. There’s a couple of pretty good PhD theses in there, and a textbook chapter or two. And what we found was that a lot of the research focuses on social participation and work. And it’s interesting that the social piece comes up with autistic people a lot, because it’s something that’s spoken about a lot. So, they tended to be focused on social participation and work. There wasn’t a lot of records focusing on participation in self-care, or these other activities of daily living. There were no studies that focused on rest or sleep, which was interesting. Because we know that that can be an issue. And we know that I tend to find that sleep and rest is a bit of an occupational area that sort of enables the other areas because if you get a good rest and a good sleep, you can do whatever it is you need to do the next day. So, it’s interesting that that wasn’t looked at.
One of the things that came up really, that was really interesting for me in terms of my background as an OT for children and young people, is that ‘repetitive and restrictive behaviors’, as they’re called in the diagnostic criteria, or what we would call passions or focused interests, that focused interests are really protective in older adulthood. That is, when you’re retired, and you can get up in the morning, and you have a focused interest to do, an activity that you do, and you’re really passionate about and really interested in it, that’s actually protective. And it’s a really good thing, and it’s a strength. And that was really fascinating because with children, we tend to pathologize these restricted interests. I was always told, you know, starting out in my career, “You need to get them away from their focused interests. They need to broaden it. They shouldn’t spend all day doing their focused interests.” So, it’s fascinating that at the other end of the lifespan, this type of having a passion is a great protective thing of a person’s well-being.
Kristy:
And Meg, what a terrific opportunity it is for us to start changing the narrative around a focused interest. And if we’re seeing benefits in later life, then there’re surely benefits throughout the lifespan as well. And so, changing — we know that in later life, there is role change. So, people, you know, they often retire. And that can be a really tricky time in a person’s life for being able to renegotiate their life roles, sometimes — their participation, their occupations, their activities. So, having something that a person is really interested in and develop terrific skills in is a really positive way to change the narrative, change the story, and start thinking about focused interests in a different way, and look at looking for some of the benefits towards well-being.
Meg:
I love this reframe and this wide view lens that you have on it. On Episode 4 of the podcast, Dr. Kristie Patten said, “We don’t build our lives on our deficits, we build our lives on our strengths and interests.” And so many times, you know, over and over again, an autistic person will say, you know, “They took the cars away from me because I kept lining them up. But I was doing something really important that taught me something that I needed to know to do the thing I’m really good at now,” that may or may not be their job, or their hobby, or their passion, or the thing they connected with their partner over. It’s so presumptuous to think we know better for people how they should spend their time, especially their leisure time, their play time, than they do. And I love that you’ve put this longer lens on it to say this is protective in older adulthood when, correct me if I’m wrong, but mental health often gets worse.
Kristy:
Well, mental health or depression and anxiety can sometimes be a coexisting condition for a lot of older people as they begin to age for a number of different reasons. But yes, there are many people in our community, older adults in particular, living with mental health issues. And as occupational therapists, we really champion occupation and the use of occupation to help a person’s health and well-being, and sense of self, and sense of achievement and accomplishment. And we know that all of those things are really important throughout the lifespan, but particularly in later life as well.
Meg:
You know, it’s interesting, we champion occupation. And I think most of us, even in more traditional OT school programs, were taught that we need to have a culturally responsive lens on what is a meaningful occupation for a person. But in most cases, they hadn’t yet layered on being autistic as its own culture.
Kristy:
Yes. Yeah. And I love what we’re doing at our university at the moment. We have a unit called ‘Culture, Diversity, and Health’. And we just don’t focus on culture, we focus on elements of disability and diversity, so that we can actually start to broaden our understanding and our lens to make sure we’re culturally appropriate for everybody we meet, whether that be because of, you know, their experience of disability, or whether that be their experience of ability, or whether that be the culture that they’ve come from, or their sexual identity, or gender, et cetera. So, I can see some positive changes in the education of our next generation of health professionals.
Meg:
That’s exciting. I hope that becomes much more widespread than it is now. But that is such a well needed culture shift, because I think a lot of us are unlearning what we learned in our graduate programs.
Kristy:
And I guess that it takes a long time, doesn’t it? The trickle effect, like the ripple effect, when you’re actually, you know, you start here and you make a small change, and how long is it? So, yes, much more work is needed to be done. And we also need therapists who champion that in practice, so that our students are having all of that information reinforced throughout their educational journey and lifelong professional journey of learning.
Meg:
Absolutely.
Caroline:
One of the things about Western Sydney, particularly, is that it’s one of the most culturally diverse places on the planet. Sydney is a city of about 5 million odd people and about two and — two to two and a half million people in Western Sydney, and about more than 50% of those are from other places, other countries, different cultures, different languages, which is what makes Western Sydney really great and a real strength of the area. So, at our university, we’re kind of well placed, I guess, to teach these things. And we have lots of students that come from lots of different areas. So, that’s a really great strength. But one of the things that came out in the scoping review that we also wanted to say was one of the findings was that of the 23 studies, I think 90% of the studies are from Western countries; Australia, the United States of the United Kingdom.
And so, there isn’t much known about — so, we’re talking about the process of ageing, and participation ,and being autistic. But there’s nothing in there that’s known about, much about cultural diversity for these people and what it looks like to be culturally and linguistically diverse and also autistic and also ageing. Or what it means to be first nations and autistic and ageing, and what that means, and what does meaningful participation look like. Because what we’ve got is a picture of, really, some really great work. But what we’ve got is a bit of a whitewashed view of it at the moment. And so, really, more is needed in this space of cultural diversity for autistic ageing people, because we know that conceptualizations of ageing look different in different cultures and conceptualizations of disability look different in different cultures. So, very little known there, I think.
Meg:
Absolutely. So, you’re finding a lot of gaps, it sounds like, in the research that’s out there. What are some of the implications of this? The implications of what you’re finding, the implications of what you’re not finding. For those of us who are working with autistic folks, which is all of us, right — in childhood, you’re working in acute care in the hospital, you’re working with autistic folks; you’re working in skilled nursing, you’re working with autistic folks. I do know that autistic people have a lower life expectancy than neurotypicals. And we are seeing more and more older adults who are autistic. So, we’re all working with autistic people with very few exceptions. What are the implications of all of this for us?
Caroline:
Yeah, that’s a great question. Kristy and I were discussing this. What’s really important is that when you’re working with an individual person, that there’s that person-centeredness of occupational therapy, or of your therapy. You practice working with that person in their own circumstance, and trusting that person as an expert in their own lived experience, and really partnering with them to work through this process of whatever that support looks like. And I think that’s something that comes out as very important. And also, the advocacy that might occur where you’re working with the person to overcome certain policies or systems or funding type challenges, how you might be an advocate in that space as well.
Kristy:
I think that the first thing that comes to mind for me, as well, is Mind the Gap, because there is this huge gap. So, we can’t rely on, you know, big systematic reviews that are going to guide our clinical work that we do. So, acknowledge that there’s this huge gap in what is known currently, and go back to the foundation skills that we have as occupational therapists to be person-centered, and listening to the person’s story, and also taking the neurodiversity-affirming approaches.
Meg:
That’s lovely. I wonder, Caroline, you talked about societal change, systems change, advocacy, these barriers that exists to authentic participation in daily life that go beyond a person, right, that we can’t teach the person a new skill, make changes to their environment, teach the one or two people in their immediate environment a new skill, and have that be what helps them access daily life all the time. What would y’all like to see happening on this community level scale to support autistic participation in daily life at any age?
Caroline:
That’s a great question. I think one of the things that — and I think that’s a little bit harder, sometimes, when we’re in interventions, it’s easier to say, “Oh, well, it’s just that you need to learn these skills as the autistic person, it’s not that we need to change the entire school system around how it responds to your autistic needs,” so that we need to change work culture, or that we need to change hospital culture, or anything like that. It’s, almost, it’s easier in a way to put to put it back on the person. So, that’s what we tend to do. And then, we sometimes find that that isn’t what solves the problem. And it is the system’s level, and I think the system is harder to move. So, I guess we need to remember and acknowledge that those systems are harder to move, first of all.
I think what we need to see at a systems level, and at a kind of policy and governance level in the tops of healthcare organizations, or not-for-profits, or hospitals, or anything like that, we need to see the voice of autistic people up there, having a seat at the table. I think I’ve heard autistic adults say this many times. They’re saying, “You need to give us a seat at the table. We need to have a say in health policy, in funding that impacts us, that impacts our lives.” And so, I think we need to see that more done in a really authentic and meaningful way, and not just getting, “Oh, we’ve got an autistic consultant in our organization and therefore, we’re doing it.” It has to be integrated in a way that’s meaningful so that those systems can start to shift when we change the voices at the top, and we change the culture of decision-making at the top, and it filters down. But it’s going to be slow. So, we’re trying to trudge through that, I guess.
Kristy:
And when you think about autistic older people, there could be a time where there’s an intersection of requiring residential aged care. And that’s, I mean, I don’t think, Caroline, in any of our studies thus far did we find any study that actually reflected the voice of the autistic person in a residential aged care facility, there were studies and we can talk a little bit more about this, because not all of the 23 studies actually included the voice of the autistic older person. Some of the findings that we have might be expert opinion, or they might have been studies that were on or about older autistic people. And I think that, by memory, there might have been one study that was looking at residential aged care facilities, but no research that we’ve come across to date that looks — and we still are in the process of finalizing our results for the scoping review — that actually looks at residential aged care facility, and how that could support older autistic people in participation in later life. So, there are so many unknown things, although Caroline has some experience talking with older autistic people, and there is a lot of fear. Caroline, do you want to share?
Caroline:
Oh, yeah, there was one particular older autistic person that I know through channels who said to me, “Oh, the day they come to get me for the residential aged care, that’s the day that I will end my life. I will not go.” And I was really shocked by this person’s sort of candidness, I guess, and that kind of really highlighted the importance of the issue. And the importance of very few — I suppose there’s so much vulnerability with people when they when they go to residential aged care, and it’s about how do we really respect the person. This autistic person’s view was, “Well, they’ll never, you know, respect my interests, respect my need for predictability and routine, and the importance of that, or respect any of my kind of tactile-based sensory issues while they’re trying to support me with self-care or anything like that.” They were just like, “Nah, I’m not.” And that was so — I think that this highlights the importance of the issue. I wonder how many other people out there who are autistic would say the same thing, just because of perhaps the lack of knowledge or skill, or the lack of highlighting the importance of the neurodiversity-affirming approach when supporting people, especially the Autistic community, who perhaps are a little bit more vulnerable in terms of speaking out for their own needs. So, that highlighted the importance of it.
Meg:
It really does. And that fear makes so much sense because I imagine that person has had negative experiences in schools and potentially everywhere throughout their life. And Caroline, you said, I think you hit the nail on the head when you said, it’s so much easier for us to say, “I wrote a goal. I’m going to teach you a skill.” It’s not just that it doesn’t work. It’s that we’re causing harm a lot of the time with that approach because often, the ‘skill’ — I’m using air quotes — that we’re teaching is asking that person to mask their authentic self and to present as non-autistic, which we know has just such a cascade of negative health outcomes including reducing life expectancy, suicidality, PTSD. So, we have these traumatized autistic folks, right, most of my autistic — many of my autistic guests have said, “We don’t know what a not traumatized autistic person looks like. We haven’t seen one yet in our culture.” It is kind of exciting to imagine if we had a different kind of training for those staff. I bet there’s a lot of people who be excited to support older autistic people in a way that felt really good to those folks.
Kristy:
Yeah, absolutely. And our work is heading into that direction as well. So, we have a collaboration with Dr. Bill Wong. And we’re looking at the readiness and preparedness of pre-service health professionals for working with older autistic adults. So, we want to know what do our pre-service professionals at university level, what do they know? What do they understand? What sort of approach would they use if they met an older, autistic person in a clinical practice setting, or even in the community? We’re interested also in, you know, how has their life, and their trajectory, and their paths crossed with autistic people? And how does that shape the sort of health professional that they’re becoming at the time? We’re just about, Caroline and I, are just about to embark on the Australian part of this study. So, Dr. Bill Wong has already started in his part in the US, which is really exciting. And we’re close to sharing some of our results on that. And we’re super excited because working with cross-cultural collaborations, we can start to think on a global space, and how does the culture maybe in Australia and the culture of the US differ, and how does that shape our practices with older autistic people? And so, with some of those things, we can start to explore and understand, which is, I guess the first step, if we want to make any real meaningful change.
Meg:
I’d love that. I’d love to hear more about the other research that y’all have done or are working on.
Caroline:
Yeah, we’d love to. Love talking about my research. A lot of my research in supporting autistic people is looking at sensory processing, and how we can support participation through helping people to sort of, you know, identify what their sensory needs are, and when those sensory needs can be met within the environment in a way that supports participation. And I’ve published the — we’ve developed a framework called the Sensory Activity Schedule for Children, which we have sort of, we believe can be adapted for adults as well, which is really looking at how do you help the person to identify what their sensory needs are? And then, how do you help to identify opportunities within the environment to meet those sensory needs. And depending on who the person is, how old the person is, one of the conferences I went to a number of years back, I saw an autistic advocate, Dr. Stephen Shore, who’s an American, I think he’s from the East Coast somewhere.
Meg:
He’s been on the podcast, too. He talks about self-advocacy. Yeah. He’s great.
Caroline:
Right! He talks about self-advocacy, and I’ve used a lot of that stuff and incorporating it into how do you support a young person just to advocate for themselves in terms of what their sensory needs are. And saying, you know, “I don’t like bright lights. And that’s why I’m wearing this hat inside. And is that okay?” And so, I’ve used a lot of his stuff in my practice with people, and I’ve got upcoming, some training workshops where I’m training health professionals to support sensory processing, and we use some of his stuff. And it’s really practical in teaching a young person, you know, you don’t have to mask your sensory issues, you don’t have to be ashamed of them. But you need to say, you know, this is a thing that I do, and it helps me to concentrate, or it helps me to relax or, and, you know, is that okay? And it’s just about helping them to do that. So, that was part of what I’ve published. It’s interesting that you mentioned Winnie Dunn. I’ve also met Winnie Dunn, and we use her, some of her model in our work as well, of sort of just more describing what sensory needs are and how you can support them rather than, “Yes, there’s part of your brain that’s broken, and we need to fix it.” It’s not about that.
So, that’s a lot of my work has been focused on. Some of my other work that is just, we’re just finalizing, it was on how we support autistic school leavers. And what it looks like when you’re coming out of high school and going into the big world of tertiary education or employment, and what that looks like. And of course, what we’re seeing is, is that some of those barriers is at a systems level. As we talked about, the word ‘culture’, or a tertiary education environment type culture, rather than the person themselves. And what we also saw was that, again, strengths and interests, that if a young autistic person has a passion, a ‘repetitive and restricted behavior’ in air quotes, I suppose, but a passion and an interest that this can lead to a career. And so, that these things at young adulthood level and at high school level should be fostered and affirmed, and how can you find opportunities for a person to find a career in the thing that is their passion? Because they may be very excellent at it and know a lot about it, and that may be very suitable for a career. So, that’s some of the work that I’m doing.
Meg:
I love this, Caroline. What about you, Kristy? Tell us more about your work.
Kristy:
Some of the work that a team of researchers and I have been involved in is understanding how young autistic people learn to navigate their environments. So, how they leave home and go to the shops, or how they get to work, and how they develop these skills. Because it’s quite scaffolded but organic in children, which we’ve seen in terms of, you know, children start riding a bike. And then, that’s sometimes one of the first things that they’ll learn to do that sort of gets them a little bit further away from their parents and the community. And then, a person might — a child might then learn to walk to school. And then, a child might be able to, particularly in Australia, high school is this sort of pinnacle point where children might be allowed to go on a public bus or a school bus to go to school. And so, what we’d like to talk about is life space. So, how far you travel from your home residence. And so, that starts to expand in early, or in adolescence and in early adulthood. And so, the research question was, well, what does that look like? And how can that be supported for young autistic adults?
So, we embarked on a qualitative study where we, first of all, spoke to mothers — we actually wanted parents, but for some reason, we only got mother volunteers — to say, “Well, what did you do to support the development of these skills in your young autistic children, and adolescents, and young people?” And what we found was that mothers gently push. So, they’ve got some sort of, you know, understanding of what the child is ready for, and where their skill level is, but that they will deliberately provide scaffolded experiences for their child to learn these skills. And they’ll use it. I mean, these mothers were mothers of autistic children, but they were experts, really. And they were using some of the things that as occupational therapists, we might talk about fading. Or we might talk about, you know, scaffolding and experience, or upgrading a task to make it a little bit more difficult. And these mothers are doing exactly that. So, for going to, you know, into a shop to buy a hot chocolate, the child might go with the mother first and the mother does the entire task. And then, the next time, the child might hand over the money. And then, the following time, the child might ask, and then hand over the money. And then, the mother might wait outside the shop, and the child goes in.
But all of these things tend to take longer in terms of the time, and development are more deliberate in approach. So, more carefully thought out by the mothers, and also needing to be balanced with a deep understanding that social interaction requires a lot of social energy from the young person. And as a result, you need to give space, time, treasured activities, or whatever it is that recharges those batteries or fills that bucket back, so that the young person can then be able to engage authentically as they wish to within their community, and have enough time, you know, to have well-being and recharge their batteries and be able to go on with life after that.
The second study was looking with autistic young people. And it involved excursions around the community, how they like to get around. And so, we also interviewed and spoke with on multiple occasions for young people to get their experience. And what they said to us was there was an equilibrium that they needed to achieve, that social situations can be exhausting, they can be complex, they can be unexpected. And as a result, they need time, space, treasured activities to balance those things. And in young adulthood, that takes some time to figure out.
Meg:
I love these lessons. I was thinking about the parents or the moms in the study. And I wonder if one of the reasons they were able to scaffold so well was that they had a real, meaningful, not fabricated, long-term goal that they were working towards, right. Like, this was a real thing that’s gonna happen. So, how do we get there as opposed to some of the like, developmental milestone-based goals that we get stuck on in therapy that, well, now we’re struggling because there’s no real context for it. There’s no real meaning. It doesn’t tie into the child’s self-determination, their goals for themself. And we get stuck. And again and again, y’all are taking the zoomed-out view of what happens in a year, what happens in 10 years, what happens in 30 years? And how do we help this person get there in a way that’s good for them?
Caroline:
Absolutely. I think that we’ve seen time and time again, that having any sort of decontextualized goals and decontextualized learning, it just, it can be a little bit jarring because it often doesn’t go back into real life. And then, you wonder why it doesn’t just lock, stop, fit into real life? And it doesn’t. Yeah, because the developmental milestones, yeah, as a children’s therapist, I think there’s definitely a time and place to throw out the developmental milestones and go with what’s important to the young person and to the family, and to what they’re doing, and to what they need to do, what they want to do, what they’d like to do in the future, rather than you’re supposed to have X amount of skills by this age, because I’ve got a little checklist.
Meg:
Absolutely. I’m just smiling and nodding at you as you say that. One hundred percent. If folks listening were to have one big takeaway, or have this impact their practice in a specific way, what would each of you hope that would be?
Caroline:
I think, for young — for, I suppose, working with autistic people, keep your person-centeredness in mind and really keep that person’s strengths, interests, and quality of life in mind. In my practice, oftentimes, I would sort of come up and be asked to support kids who were very complex in their presentations, who had complex sensory processing issues, complex sensory processing behaviors, and I would often meet clinicians who are a little bit stuck on, “Oh, but he won’t stop doing this. And when we ask him to do this, he doesn’t do that.” And we’re very kind of fixed on the little intricate little things that they might be doing that might be interrupting their participation. And I would always say to them, zoom back out. Who is this person as a person? What are their occupations? What are their strengths? What are their interests? What does their quality of life look like? Answer that. What does he like? What is he good at? Answer that first and keep that in mind. Because if you start to get stuck with all of these little intricacies of the different behaviors, you can lose sight of that. And then you end up going down a rabbit hole of punitive approaches, or all very remedial type of approaches that don’t address a person’s overall sort of well-being and quality of life. Because if you have a good well-being, good quality of life, and good occupations, then you’re not going to have too many sensory issues and behavioral issues. Because if life sucks, behaviors worse. So, let’s back up a bit and think about that.
Meg:
Gonna frame that. If life sucks, behavior is worse. That’s so insightful. I, you know, I know, I was, to some degree taught this perspective of the occupational profile, and who is the person, and then we just get so far from that in our work so quickly, because it’s like, “Oh, I need to look like I know what I’m doing. And I need to write goals. And my client needs to meet the goals, and insurance, and evaluation, and IEP team,” and all of this stuff layers on. And then, as we get more skilled, hopefully, we zoom back out again. And what our confidence looks like is us being willing to listen and learn and sit with the person who’s in front of us, and come back, like you said, to who they are, what are they good at, what do they want, what do they love, and not get so lost in the performance of it and lost in the details of it. I love that takeaway. Thank you, Caroline. What about you, Kristy?
Kristy:
Well, just to add from what Caroline has said, the terrific thing about older people is you can ask them. So, with children, it might be a little bit tricky, but they have, in our situation, 50 plus years of lived experience about what works for them. And as occupational therapists, sometimes we do need to push back to the system. We do need to advocate and say, “Actually, the most important thing that I do today with this person is sit and listen to their story, listen to their hopes, listen to their dreams, listen to what’s working, listen to what’s not working for them.” And I think that’s the lovely marriage that we have between our research with Caroline and I is that, you know, some of that wisdom of older people and using that to benefit them, we can certainly bring in for a strength-based approach in any area of practice that we work.
Meg:
That’s so lovely, Kristy. I was thinking as you were talking that it is a little bit easier for us to access our own humility with older folks. And I hear the challenge of translating that to people of all ages. Like, let’s do it, right, in the same way we listen to and respect and try to understand the experiences of older folks. We can do that throughout the lifespan and we can let that inform how we work with younger autistic people as well. That’s wonderful. Yeah. So, last question. I’ll link to your work that is available online in the show notes. But tell folks who are listening just where they can find you online.
Caroline:
I’m on Twitter at @CarolineMillsOT, you can find me. And also, if you Google Caroline Mills Sensory Activity Schedule, you can probably find some of those publications as well.
Kristy:
And I’m also on Twitter and I’ve got @KristyCoxon. Both Caroline and I are at Western Sydney University. So, often, if you Google that with our name, you’ll actually get our university profile that links to a lot of the research that we have, plus an email address. Contact us, get in touch, we’d love to know, you know, what you’re working on, or we’d love to work with new people. Or, you know, one of the things that we love is when a person with autism says to us, “This is the problem we’re having, how can you help?” And as research occupational therapists, we can start a journey. And we can say, yeah, absolutely, there’s a real need for this area of research, and to look into this, and see what we can do. But similarly, we’ve worked with clinicians who say, “I just don’t know what to do in this situation,” you know, and so we can connect and help them in those ways, too.
Meg:
I love your work. And I love your passion and your willingness to spend your time today. It’s, you know, it’s 8 o’clock on a Monday for me and 10am on a Tuesday for you. And it’s wonderful to connect and to learn from you, and it’s good to know that you’re out there doing the research, doing the work, doing the teaching to try and get these changes into action. Thank you so much.
Caroline & Kristy:
Thanks. Thanks Meg.
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Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
