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7. Physical activity, mental health and neurodivergence
273 Plays7 months ago
The theme for Mental Health Awareness Week is “Moving more for our mental health”.
Dr Patrick Jachyra is someone who knows all about this. Patrick is assistant professor in sport and exercise sciences at Durham University and he researches how to support the physical activity and mental health of autistic people.
This is all the more important since statistics show neurodivergent people experience more mental health challenges than the general population.
Music: Aukestra
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Transcript
Addressing Stigma and Discrimination in Autism
00:00:05
Speaker
The debilitating impacts of stigma and discrimination faced by autistic people can contribute to poor mental health, and they've called out a need to try and move beyond this. It's really moving beyond this blame-based approach of just the individual's problem, but to be able to provide support when it's needed so that people can feel safe.
00:00:24
Speaker
but then also be active in ways that feel right for them. It's not supposed to be mutually exclusive. It's to understand how we best support people as people and not as the sort of magical effects that everybody's chasing.
Podcast Introduction and Host Background
00:00:42
Speaker
Hello and welcome to This is Autism, the podcast from the Northeast Autism Society. My name is Kerry Heikok and I'm the family development manager at the charity. It's mental health awareness week this week and the theme is moving more for our mental health. Dr. Patrick Jakiri is someone who knows about this very well. Patrick is an assistant professor in sport and exercise sciences at Durham University and he researches how to support the physical activity and mental health of autistic people.
00:01:11
Speaker
This is all more important since statistics show neurodivergent people experience more mental health.
00:01:16
Speaker
challenges in the general population. So thank you for joining us, Patrick.
Patrick Jakiri's Journey into Autism Research
00:01:22
Speaker
Can you just start by telling us a little bit about yourself? Thank you so much, Kerry, for having me. It's an absolute pleasure to be able to join you guys today. I have a very eclectic and diverse background, definitely a winding road. So I first thought I was going to be a PE teacher, did that for a few years to only realize I wasn't going to be a PE teacher. It wasn't something I wanted to fully do.
00:01:44
Speaker
I then sort of had a brief stop in medical school, only to realize I really didn't want to do that either. So then I went to research to try and find myself, and it was through that that I found my passion of working with people and being able to make change through research is what I really loved. And then to finish that, after 10 years of university, I did a fellowship in psychiatry at a psychiatric hospital in Toronto, Canada to again, but understand how do we support autistic and neurodivergent people who come into our emergency room
00:02:14
Speaker
in a psychiatric hospital because, again, experiences have been fairly challenging for those people who need support sometimes. I then joined Durham from Toronto. And one of my favorite things that I've loved about the UK is sort of just coming and being able to live here and also learn new different things. I enjoy cycling. And I've cycled previously from Toronto to Niagara Falls twice to raise money for pediatric cancer.
00:02:43
Speaker
And one day I'm hoping to do the C2C ride, which is sort of the west coast of Cumbria, through the Lake District, and then it ends in Time Out. Now, I don't know when and how I'll have the time to do that, but that's like a distant goal. Wow, that sounds, it sounds like you're a very busy person, Patrick, and very adventurous. Definitely a bit adventurous, and sometimes busy too.
Growth of Inclusive Community Programs
00:03:06
Speaker
So what is it that, why did you get interested in conducting research that involved neurodivergent people? What was the driver and the passion for that?
00:03:15
Speaker
Yeah, so I think this goes back to when I was 16. So I used to work at an overnight camp or a sleep away camp. We had kids from very diverse backgrounds, some of them underprivileged backgrounds, a lot of kids with behavioral challenges. At that time, nobody sort of knew what autism was. That was around 2006 from being a 16 year old. I didn't know what autism was. And we had a camper who particularly had a difficult time with
00:03:41
Speaker
You know, get along with others and constantly getting into fights and skirmishes with other campers. At the time, we were told that we had to regulate his behavior and penalize him. But this is what I quickly started to learn that actually we were missing the boat entirely.
00:03:57
Speaker
What he was doing is having a hard time through being away at home, but also just how overwhelming camp is and it's an overnight nine day journey. And so then there was one day I found him just laying on the grass and I laid down beside him to actually just start to get to know him. He wasn't my camper even.
00:04:14
Speaker
But just to try to understand what was going on and what does his life actually look like. And after chatting with him for a few minutes, he told me again that camp is super overwhelming and he didn't necessarily want to be there and that he has autism. And again, at 16, I had never heard of autism. And so that sort of was something that I tried to understand, okay, well, not only what is autism, but then
00:04:39
Speaker
sort of, what are we doing to support this child? Because we're penalizing him for something that we're actually not really understanding very well. And so that was really something that opened the door for me. That inspired me to go into sort of teacher training to think, okay, well, how can I
00:04:55
Speaker
learn more, but also try and make an impact. Again, like I said earlier, I realized teacher training was not for me. And that, though, provided a few more research questions. And that's how I eventually going into research through these kind of life experiences. One of the other things that sort of allowed me to stay in research was when I was doing research sort of in physical activity for my PhD. So I was trying to understand, are artistic in order to people participating in physical activity? Why not? How can we support them better?
00:05:24
Speaker
Again, what are the barriers? What I was finding more and more and more in Toronto, especially, there were so few opportunities. And one of the things that I tried to do was to set up a youth program. And so what we see especially is the youth have the highest dropout rate, especially our autistic nor divergent youth. So as you get older, the likelihood for them to participate goes down. And that's a problem because that's sort of when their health might need the most support. And so what I tried to do because of the lack of programs was set up a community program called the Youth Council.
00:05:54
Speaker
And it was really just a social program that had physical activity, cooking, group outings across the city just to kind of get youth into a space where they can feel safe and also something that they can enjoy. The program was on Friday nights from 5 to 8 p.m. so wild way to spend your Friday night, but it was so impactful. We started with four participants and by the time I left for the UK, there was 45.
00:06:18
Speaker
And one of the most rewarding things is that I've been able to employ an autistic young man as a staff member. And again, that has been one of the most rewarding things I've been able to do, challenging in many different ways from chasing funding and trying to support this program and make the program grow.
00:06:35
Speaker
But then also the most rewarding, we had families driving two hours away to be able to come. So that's the long-winded version of why I got into the research is through
Co-producing Autism Research
00:06:45
Speaker
these life experiences. And I think sometimes research forgets the life experiences of people, but I've really tried to firmly ground sort of my research in the lived experiences in the everyday lives of autistic and neurodivergent people.
00:06:58
Speaker
Yeah, and I think that really touches on the next question. We know that your research is often co-produced with alongside autistic people. What does co-production mean to you and how does that work? Why does it matter?
00:07:12
Speaker
It's so important, and especially because, again, being in a university and the amount of power that sort of is there when you work at a university doing research, sometimes people don't really realize that, right? And historically, researchers have either taken research from disabled people and called it their own or ignored their priorities or consulted them in a very tokenistic way, which all of, to me, were
00:07:35
Speaker
Things that I'm not okay with that I don't stand for. And so not only are there clear power imbalances, but again, it really doesn't give power back to people who need the power the most. And so a co-produced approach really tries to have an equitable power relation at the heart of everything. So it's shared with everybody involved from the beginning until the end.
00:07:54
Speaker
It is difficult, but the idea is that everybody has the same levels of power and support across. This works by fundamentally investing time, effort, and understanding of disabled people's lives and working together with them from the very outset. So whether it's trying to spend time and understand what their key priorities are, work to understand how we can better support their lives through research, policy, or practice, through meetings, discussions, and
00:08:19
Speaker
engaging fundamentally with them, that is sort of the goal on how to do that.
Benefits of Physical Activity on Mental Health
00:08:25
Speaker
So an example of how we've been able to do that just in the UK. Recently, we co-produced the physical activity guidelines for the Chief Medical Officers of the UK, just published in 2021.
00:08:35
Speaker
This was done in partnership with 233 disabled children and young people from a diverse group of disabilities, 73 parents and carers, 7 teachers, 4 disabilities, 4 organizations, and 33 educational and healthcare professionals. So again, it's really trying to work with a diverse group of people.
00:08:54
Speaker
to also not understand, sorry, to also understand that diverse needs, but to share that power. Because again, fundamentally, we need this research to be impacting the lives of people and not just sort of sitting on a university bookshelf where people are not accessing it.
00:09:09
Speaker
Yeah, absolutely. I mean, I couldn't agree more with that. The research that I do is often, well, I try, it's difficult, but I try and do co-production wherever possible. And I think it's become a bit of a buzzword. As in it, Patrick, would you agree co-production is used quite a bit, but it's not always been done in the manner it was intended originally.
00:09:28
Speaker
Absolutely, it is a very lucrative buzzword and is being absolutely thrown around incorrectly a lot of the time and there's few people doing it sort of with its proper intention. I think sometimes people refer to co-production but really they talk about co-design and that's fundamentally different.
00:09:44
Speaker
But absolutely, even in university settings, there's lots of pushback, especially from disabled people saying, actually, you're not doing that. And that's important, is that it needs to go both ways, like accountability. We can't keep saying that we're doing co-production where people are not, especially again, historically, when universities have not supported the research of disabled people very well, and predominantly from a biomedical approach as well, right? So I think all of these things are so important to be able to kind of make change and to be receptive to that as well.
00:10:10
Speaker
Yeah,
Environmental and Societal Influences on Neurodivergent Mental Health
00:10:11
Speaker
absolutely. So to talk about physical activity for a moment here, in layman's terms, so really simply, can you just explain to us how does physical activity to support mental health? Yeah, absolutely. So why don't we start sort of why it matters? So far, we know that physical activity can boost self-esteem, mood, sleep quality, and energy even, right? And so we've seen that exercise involves even changes in our stress levels through kind of complex neurobiological factors in the brain.
00:10:41
Speaker
What we also see is that the more we're active, sometimes you have changes in the brain, such as this area called the hippocampus, which is so important to consolidate our memories from short to long term and the processing of our emotions. We've also seen that can help reduce the risk of depression, dementia, and Alzheimer's.
00:10:58
Speaker
Something as simple as walking 10 minutes a day can be all you need to kind of make some of these meaningful changes in the brain. They can change the size and the volume of the brain, which are critical to our mental health and everyday life. I think what's so important is that these small things can have accumulative benefits, whether it's 10 minutes a day or more. All these little things are fundamental to be able to support our mental health on the whole.
00:11:22
Speaker
Um, there are still, there's still as much more research, you know, the exact causal mechanisms of how these things work. But so far, like I've said, we know that there are brain changes and body changes and the body relaxes cause stress goes down. Um, but it's also important that we don't overdo it. Um, because again, we have to listen to our bodies when it feels like if we're doing too much, uh, because there's always that tipping scale, how much is too much and how much is not enough. Uh, but again, that the work in this area is still evolving, but generally there's a lot of
00:11:50
Speaker
brain, positive brain health changes. And we're increasingly seeing how the brain changes over time, where before we were much more thinking that actually the brain was pretty fixed once it made those connections. But that idea of brain plasticity is increasingly being also seen in the physical activity research. Absolutely. And I think movement is so important, you know, on a very smaller level, I'm just thinking about children in schools where we, we need to sit at desks and not move very much. And we expect children to learn when we know that actually
00:12:19
Speaker
movement and promotes learning, doesn't it? You know, it's a good thing. Absolutely. And I think that's such a key that we even look at the history of education. I mean, it's come from like a different model from the industrial age, but yet we're still doing the same things from 200 years ago, but we don't live in industrial age anymore. So I think lots of people are including saying we need to review sort of what we do, why we do it and how we do it. Because doing it just because the way that we've always have done it, isn't a good enough rationale to
Systemic Barriers in Mental Health Support
00:12:44
Speaker
keep doing it. Absolutely.
00:12:47
Speaker
So, big question. We know that autistic and lots of neurodivergent people experience high rates of mental health challenges. Why do you think that is, Patrick? This is really important, something that we're really trying to address and better understand.
00:13:04
Speaker
So there are no exact causal mechanisms yet known. There's some research looking at whether being no virgin itself can increase potential risk for mental health challenges. Of course, this very idea is debated and contested and the research isn't very clean on that, it's very messy.
00:13:20
Speaker
I think if there's a biological basis, we also need to remember that biology does not live outside of the society we live in. But sometimes our research is presented in this way, right? The focus on biology is so huge, but we underestimate and don't really focus on the environmental impacts. And for me, we have to also remember what neurodivergent people are telling us, right? So oftentimes you hear stories and experiences of how the world is an exhausting, traumatic and difficult place to live if it feels like it's a place not made for them.
00:13:49
Speaker
We need to actually acknowledge this and work to change how environments are set up and we expect people to live in these environments that profoundly are not accommodating to them.
00:13:58
Speaker
and challenging for their mental health, from sensory sensitivities to bullying and exclusion, experiences of loneliness for some, burnout, stigma, and discrimination that autistic people face. And all of these things contribute to challenging mental health. This recently has been even amplified by the World Health Organization, who have explicitly said that the debilitating impacts of stigma and discrimination faced by autistic people can contribute to poor mental health. And they've called out a need to try and move beyond this.
00:14:27
Speaker
So again, we need to move beyond the sort of individualized sort of what's the problem with the person, but also increasingly recognize what's going on in the environment, how our environments are built and to move beyond sort of this individual focus, um, because it doesn't fully represent the lives of our neurodivergent people. Um, but yet we keep putting all of our research funding in that. If we can just find that one thing in the brain, it's like, in fact, no, because that will not make meaningful change for people in the long run.
00:14:56
Speaker
I think another thing that we're finding is that the current mental health systems and supports are really not fit for purpose. The barriers are so extensive from wait times and navigating the different levels of support and the different pathways. We know that the emergency room, for example, and even going to the GP is an often stressful and difficult experience. We have healthcare professionals saying that they don't feel adequately trained and qualified to work with neurodivergent and autistic people.
00:15:20
Speaker
So you have this huge storm of things going on of how to support neurodivergent mental health, but yet oftentimes the people are blamed for our neurodivergent people and we need to really move away from this blame-based model because again, it doesn't really support mental health in any way. And I think finally, again, it's focusing on prevention. As much as we need intervention and support, we need to focus on prevention. And that could be, again, through understanding how do we support the everyday lives of neurodivergent people? Because I think we have such a long way to go. We've made a bit of progress.
00:15:50
Speaker
But fundamentally, we have so much way to go to challenge stigma, to make sure that environments are more accessible, whether it's through our sensory needs or through our bodily needs, healthcare access, the quality of care. Again, there's so much that needs to be done. And I think fundamentally to move away strictly from this biological focus.
00:16:11
Speaker
Because I don't think it's adding that much more to the lives of autistic people to keep researching these things without trying to make meaningful changes. I know this is ambitious. This is not to try and take away from those research efforts from other people and the hard work that other health care staff deliver. But equally, we can't keep doing the same if it's not working.
00:16:31
Speaker
And on that really key message, Patrick, we're going to take a little break and then after the break, we'll have a chat about some of the barriers around physical activity and have a little bit more understanding about the research that you're doing.
Family Development Services Overview
00:16:45
Speaker
Hi, while we're on a quick break I thought I'd tell you a little bit more about the Family Development Service here at the North East Autism Society. The Family Development Services provides support for families pre, during and after diagnosis and includes a variety of services including our parent and toddler groups, autism hubs, workshops for families, a dedicated inquiry line and our resource site as well which can be found at the Family Resource site on the North East Autism Society website.
00:17:11
Speaker
So if you go to ne-as.org.uk and go along to the family development site, you can find all the information there.
Barriers to Physical Activity for Neurodivergent Individuals
00:17:22
Speaker
Welcome back to This is Autism. Today we're discussing physical activity, mental health and neurodivergence with Patrick. So Patrick, welcome back. We had some really great discussions in the first part of this podcast. And now we're just gonna go into barriers. So what barriers do you think exist to neurodivergent people when they're accessing sport or other physical activity?
00:17:47
Speaker
Unfortunately, there are so many, and I think there's so much work to be done to try and make this better. Some of the most obvious ones that come up oftentimes is a lack of time, cost, but accessibility, again, back to the built environments piece I spoke about earlier about mental health, the sensory sensitivities are so important to understand, but yet our environments aren't really built for that. So we had one
00:18:09
Speaker
Autistic women tell us, again, she can go to the gym and she wants to run on the treadmill, but she gets there. There's no blinds when the sun is coming through and it's just so full on that she just cannot do it. But yet, that's just not taken into account. Despite all of her efforts, not a lack of motivation, it's that important understanding of how all of that's working together.
00:18:28
Speaker
Unfortunately, there's also so many accounts provided to us about bad and traumatic experiences in PE or community sport that where our interests don't work. And for some people, it's so bad that they just can't go back to it because of how negatively impactful that was. We also hear from parents and caregivers that they're often put in positions to either support PA or tries to pursue therapeutic pathways.
00:18:56
Speaker
But that, again, just talks about the complexity of how our environments and our systems that are not really working well together to try and support this. I think, finally, one of the other big barriers is that there's such an overemphasis on sport. And while this may be good for some autistic and neurodivergent people, we can't keep focusing on that, especially in our schools, where we know that it's not really working well, where attendance in schools is really low, in autistic and neurodivergent people generally, and especially in PE.
00:19:23
Speaker
But yeah, we keep focusing on sport as the only way to move, but we know that's not the case. So we
Raising Awareness and Reducing Barriers in Physical Activities
00:19:28
Speaker
need to try and really think about how do we not make these sort of activities overwhelming and do better. And that's again, where we need to move and we're not there yet. So what can we do to make things better? You know, how can we reduce these barriers?
00:19:46
Speaker
I mean, that's a very loaded question, Carrie. It's a big question. It's so important. So I think there's a few different starting points, right? And again, there's never going to be probably one answer to solve at all. I would say one of the most key things is knowledge and awareness of autism and neurodivergence. And yes, we're moving toward
00:20:07
Speaker
understanding better models of being physically active, but there's fundamentally so much stigma still. And without challenging that, the stigma piece, I think we can't expect people to be more active if that's still happening. So for example, you might go to a gym or to another context, and if the coach or the trainer has no clue how to support someone who's neurodivergent, we're almost setting them up to fail from the beginning. And until we can, can I get that piece right?
00:20:34
Speaker
teach not only how to adapt spaces and activities, but also understanding and empathy. I think that's so key to try and sort of make a change in this area. I also think a big change that is important is to reimagine how we kind of teach physical activity altogether. So again, it doesn't have to be just the gym.
00:20:51
Speaker
It could be other ways of being active in just general movement and taking account into people's multiple needs. So for some of our neurodivergent people who also might, for example, be diagnosed with Ehlers-Danlos syndrome, right? That's so important, but yet often isn't taken into account in the physical activity spaces. And when it does get identified by someone who self discloses, coaches might say, well, I don't know what to do now because they haven't been trained and we don't really have a good understanding of how to adapt activities for that.
00:21:19
Speaker
those who do it well and can adapt activities do it really well. But again, we know that we need to broaden that reach and then that's not there yet. And I think one critical way where it's been able to provide me with examples is we need to continue to work with neurodivergent people directly to understand what do they need, how to support them, and what does that look like.
00:21:40
Speaker
So, so far in the research, we've worked with autistic children and youth, adults, a group of autistic women, healthcare professionals, and two studies with pairs and cares. And again, that's so important to really understand fundamentally what are their lives look like because it's not
00:21:55
Speaker
being represented in the research in the same way. And we keep trying to do the same thing, but we're not doing that. So I think fundamentally understanding people's lives to then try and make change is hopefully a way forward.
Adapting Activities for Neurodivergent Accessibility
00:22:07
Speaker
Because again, historically, research hasn't done that very well, at least in this space. I think, Patrick, that was a really important point that you just made around the co-occurring conditions, actually. So obviously, a lot of our autistic people will have conditions. I know there's a lot of research that's particularly around Ehlers-Danos syndrome.
00:22:24
Speaker
and actually the challenges that those co-occurring conditions also bring alongside being autistic when accessing something like a gym or physical activity. So it's kind of multi-layered, isn't it? Multi-layered kind of barriers.
00:22:38
Speaker
It is, and there's been such a focus on, oh, if we find the right way to motivate people, they'll be more active. But it totally ignores those multiple layers that need to be considered, right? Someone might wake up and have a flare up that day. And if they go to be active and there's no way to manage it, well, they can't be active, can they? So it's really moving beyond this blame-based approach of just it's the individual's problem, but to be able to provide support when it's needed so that people can feel safe, but then also be active in ways that feel right for them.
00:23:08
Speaker
And I kind of feel like you've already touched on this quite a bit, but are there any kinds of physical activities that are better for mental health than others, or is it just, let's get moving?
00:23:20
Speaker
Yeah, so it's more of let's get moving. There's not one single activity that's better than others. The research keeps showing that over and over. All of them have potential benefits. And I really think, again, we need to focus on the individual needs and accessibility, interests, abilities. All of those are much more important than like this magic fix. And everybody, some of my research colleagues are chasing for the magic activity, but we keep seeing that that's not the reason that people are active.
00:23:47
Speaker
Things that are so critical, such as fun, enjoyment, sort of the pleasures of movement, just moving their body. And some people say that's the most relaxing thing that they can do. Other people say that they just needed to try to shake off some of the anxiety that they might experience. All of these things have way greater benefit than this one magic activity.
00:24:04
Speaker
I think what's also important is to try and kind of change the narrative that being active doesn't only include the gym. It doesn't mean meeting a marathon. It doesn't mean that you have to sort of do it six times a week. It's finding something that you enjoy, gives you sort of a sense of meaning and connection, whether that's connection to the activity, to animals, to people, to the environment itself. I think once you find that sense of connection, again, in addition to looking at how to support the environment, all of that can be
00:24:31
Speaker
critical to support somebody to be active. And again, small things like walking or gardening, cycling, all those can be beneficial. As long as people feel safe, fun, there's that power of choice and that freedom to be able to kind of move. Yes, I need some guidance on how to do that, but to offer that is so critical. And I don't think we are there yet to be able to do that.
00:24:57
Speaker
I think for me, in terms of physical activity and mental health, we also have to be mindful that physical activity is simply a tool. It's not the be all and end all. There are different ways to support mental health. And sometimes people position physical activity as the solution to everything, but we know it's not. It's one way that we could use to support our mental health and our wellbeing. I often say, if we're building a house, we can't use one tool to do it, and we can't expect that from physical activity either. We need to have
00:25:23
Speaker
other things to support our mental health such as let's say connection to people or places or animals especially where we know that loneliness and isolation can be really high in our group and also often associated with poor mental health. I think what's also important is just to think about again how we have multiple tools at different times to be able to draw on them and again to focus on the fact that
00:25:48
Speaker
Maybe we need a little bit of all of these tools all at the same time to actually keep our mental health in a good place.
Patrick's Ongoing Projects in Autism Research
00:25:54
Speaker
And if things sort of change, to draw on these tools to try and get us back to where we want to be. And again, it's okay to get support. There's often all this debate about what's better, physical activity, medication, or talking therapy. And the answer is you've got to do what works for you.
00:26:09
Speaker
It's not supposed to be mutually exclusive. It's to understand how we best support people as people and not as the sort of magical effects that everybody's chasing. I love your analogy there, Patrick. I always use the one of, you know, if you only ever have a hammer, you'll only ever see a nail. So I think that just, I love the toolbox analogy. You touched on there as well. So.
00:26:33
Speaker
A little bit about you then and your research. You've obviously done tons of stuff. What else are you planning? What else are you up to?
00:26:41
Speaker
So we've got a few different things on the go. We just finished a project with Autistic Woman across the UK. Honestly, that has been the most eye-opening and kind of alerting process I've ever been a part of, especially when Autistic Woman fundamentally have been misunderstood, misdiagnosed, ignored. I think there's so much work to be done in that space. And some of this research is going to come out soon.
00:27:06
Speaker
But I think there's so much more work for that in the area. And in fact, in the UK, women's health and autistic women's health has been identified as a key priority in the new strategy that just came out. So again, I think that's something that we really need to prioritize, especially for the generation of autistic women who have been lost or ignored and never supported across life and blamed for their lives. And I think there's so much work to be done in that space.
00:27:29
Speaker
I think for me, there's also some work that we need to do in schools. So currently, I have a PhD student, James, who's working closely with a few schools in our region to try and understand how do we support autistic people better across the lifespan. So what we're trying to do is first look back. So we're trying to speak to some recently graduated young people to understand what was PE like at schools for you? What didn't work? We know it doesn't work, but we need to understand better what's going on.
00:27:55
Speaker
but then also working directly with autistic young people in schools, teachers, parents, to understand what could PE look like. So there's a great initiative, and we just met with them yesterday. Pete Ramsey at Durham Trinity School, they're trialing this new way of teaching PE called continuous provision, where it's not running in to just try and play sport, it's essentially placing different types of physical activities around the gymnasium, and each individual student is supposed to kind of go around and use the activities, and then Pete is walking around and facilitating.
00:28:24
Speaker
There's all this pressure with Offstead and making sure that we're hitting all those key sports identified in the Offstead reports. But Pete keeps saying, actually, you can do those markers without only doing sport. And we need to reimagine what physical activity looks like as a whole in schools.
Comparing Autism Advocacy in the UK and Canada
00:28:39
Speaker
Because again, our neurodivergent pupils are not participating. They're one of the first to drop out. And their drop out rates in school altogether are really high, which is concerning as well.
00:28:49
Speaker
We have a huge project going on. It was recently funded called Moving Social Work. So we're trying to understand how can we potentially have social workers who have direct engagement with
00:29:01
Speaker
disabled people across the lifespan to be messengers of physical activity. And the reason why we've talked about social workers is over and over and over again, disabled people from the consultation work we've done have said these are a group of professionals that they trust, that they feel safe with, that they have a more direct understanding of their lives, that they're not just being sort of analyzed for their biomedical sort of concerns.
00:29:23
Speaker
And so we're through a million pound project through Sport England and through Disability Rights UK, we're hoping that we can kind of train the next generation and the current generation of social workers to be able to implement physical activity in ways that are meaningful to people and whether it's actually going back to government saying, yes, that this is important and my funding should be used for this because this supports my health. Something as simple as that through to trying to support people through conversations and understanding.
00:29:49
Speaker
Finally, we have a project looking at messages, how we message and provide communication to autistic neurodivergent people about being physically active. Again, there's been such an overemphasis on looking at the individual without looking at the messages, and we're trying to understand sort of what is the best way
00:30:07
Speaker
to communicate information on being active for those who sort of need the support. We know those who are active generally doing a little bit, but it's trying to get to those who considerably are called hard to reach. But I always keep saying, is it because we just really haven't listened to them? And how do we then share our message with them?
00:30:26
Speaker
that is co-produced. And again, that's coming from a co-produced approach through a group of adults. And we're hoping to run that study this summer. And then the last one is looking at sort of how is physical activity connected with mental health. So again, we've sort of looked at these two things in isolation. We know that activity rates are low and mental health rates are somewhat high. We'll be having done a good job to understand how they're connected. And so that's sort of my next avenue.
00:30:52
Speaker
is to try and understand what can we do better to look at those two things together in tandem, not sort of on. So when do you sleep Patrick? Because that sounds like a lot of work to already fit into an already busy schedule.
00:31:07
Speaker
Not often in between teaching and everything else, but we, I'm lucky to be working with some fabulous people. And honestly, a lot of these things like the messaging study actually came from the disabled community. They came and reached out to say, we're really interested in this. What can you do? And the very first thing that I had to remind them is that we're not here to take this from you. Let's kind of look at what we can do. And we've been able to kind of make it happen, especially with the Paralympics coming up in September.
00:31:31
Speaker
There's a lot of focus even from Paralympic to GB, talking about how important it is to move away from this high-performance model that the Paralympics have been associated with to look at more community-based routes. So even Paralympic GB is sort of moving toward this model, recognizing then how important it is to be active, but also how to support mental health. So that to me is music to my ears, because again, not everyone's going to be a Paralympic athlete and me to do better to support those who aren't.
00:31:58
Speaker
Well, I look forward to seeing all of this stuff popping up. So last question for you. Obviously you moved from Canada to Durham, Patrick. How are you finding life in the UK and do you see any difference around the attitudes, the support for the autistic neurodivergent community?
00:32:16
Speaker
Yeah, so it's definitely been an adjustment. I really struggle with the weather. I think sometimes the weather is so variable in a day that I can't keep up. You have to almost be prepared for every season all the time. That has been definitely adjustment. The rainy days I find particularly cold and damp and I don't, that's not my cup of tea. But I'm trying to find a way to kind of get used to that.
00:32:37
Speaker
But otherwise, people in the Northeast have been so welcoming, lovely. And previously, before moving to Durham, I've only really been in the south of the UK. So I've been blessed to be able to meet some fabulous people in the north. But otherwise, probably I wouldn't be able to meet.
00:32:53
Speaker
I think from the difference in attitudes, I would say that people here are much more switched on. Engagement is strong, and I think that's so important to not only advocate, but to make change. In Canada, there's advocacy efforts as well, of course, but to see fundamentally how autistic and neurodiversity people are driving some of the research priority agendas, how they are
Podcast Conclusion and Society Contact Information
00:33:15
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driving.
00:33:15
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sort of seats at the table, whether it's in parliament or not, to see people directly switched on and engaged has been honestly inspiring. And sometimes we need to remember that some of the biggest disability rights movements have come out of the UK. So now to be kind of at the home of that to me just been sometimes I need to remind myself actually where I am when working with some of these groups in tandem, because this is fundamentally what it's about to try and make change and to help the people here now, but also the next generation of kids to come.
00:33:43
Speaker
Wonderful. It's really refreshing to hear that actually, because sometimes I feel like we're so far behind in terms of attitudes. So that's very refreshing, Patrick. Thank you so much for speaking to us today. I think that has been really, really insightful and very interesting.
00:34:00
Speaker
Everyone, thanks for listening. If you've got any questions or comments about anything you've heard, get in touch with us at info at e-as.org.uk. You can also follow the Northeast Autism Society on Facebook, Twitter, Instagram or LinkedIn. The podcast This is Autism will come out each month and you can subscribe on Apple Podcasts, Google or Spotify, so don't miss out on any episodes. Bye for now.