Latest / NDV Podcast: Neurodiverse Voices Connect / Special: Oxford Health BRC Public Talk on Neurodiversity and Research

Transcript

Special: Oxford Health BRC Public Talk on Neurodiversity and Research · NDV Podcast: Neurodiverse Voices Connect

0:00
OK, So like I think we can make a start because it's 6:00 PM,
0:04
right? Right.
0:07
So hi, everyone, welcome to this Oxford Health BRC public talk on
0:13
neurodiversity and research. Before we start, just going
0:19
through the usual housekeeping needs.
0:23
So there's no fire drills planned.
0:26
So if it's if the alarm rings, just run the assembly point.
0:33
The assembly point is through your right.
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If you've been to the common room where refreshments were,
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it's through your right towards the and towards continue
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straight and then it's in the courtyard.
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That's also where you will find the toilets access.
0:49
So through that door, through the stairs and then turn left
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and then turn right. Feel free to move and steam as
0:59
much as as you need. And we would like to use a deaf
1:03
clap. We've trialed this at the neuro
1:06
diversity conference last year and he was very helpful and I
1:10
think neuro divergent friendly. So I know it's going to be hard
1:13
at the beginning, but instead of a usual clap, we just do this
1:17
and we have a silent death clap. If you need anything
1:24
organization wise, if you are lost, feel free to go to Sophie
1:28
and Sarah, my colleagues who have put this event together.
1:32
They are waving at you at the back.
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And yeah, I think I didn't miss anything, right?
1:41
Who am I? I should have said my name to
1:43
start with. I am Andrea.
1:46
I'm Andrea Costa. I am, I wear many hats.
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One of them is being the project manager for training and
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academic career development at the Oxford Health Biomedical
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Research Centre. I also led the organization of
2:00
the Neuro Diversity Conference last September, which was I
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think two of the best days of of my life.
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And some of you attended. I think you would agree.
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I also chair the Neuro Diversity and Disability working group at
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the Department of Psychiatry, which means that with other
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working group members we lead initiatives that support neuro
2:22
divergent staff and neuro divergent and disabled staff and
2:27
students. And then on the personal side, I
2:34
started the Neuro Diverse Voices project two years ago and it has
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been just registered as a community interest company, all
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very recent and it's now called Neuro Diverse Voices Connect and
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I host the Neuro Diverse Voices podcast.
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That's why I'm your host today as the podcasts style talk that
2:54
we are going to have. And all of this has been
2:58
inspired by my daughter Melody, who is 9 years old.
3:01
She's autistic and she has a speech and language delay and
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also by my recent diagnosis of ADHD at the age of 42.
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Quite late, but welcome because I feel like I know better
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understands myself research. So I do get involved in research
3:22
quite a lot. There's a few examples of
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studies that I am involved in. Currently.
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I'm advisor, I'm an Advisory Board member of the Exploring
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Character Strengths study led by Doctor JD Lai.
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And I'm also, I started recently being involved in the
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Understanding Pain in Autistic people across the Lifespan led
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by Doctor Airy, who is one of our speakers today.
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And these are Oxford Bays. But I, I also have started
3:58
getting involved in, in other studies from other universities
4:02
like the University of Salford and Manchester.
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And why is it being involved in research so important to me?
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I think first of all my lived experience, not only as a parent
4:17
but as being neurodivergent myself and feels valued.
4:21
I help shape the future of healthcare research.
4:25
It also helps me to better understand my daughter and
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myself. The Exploring Character
4:30
Strengths study is a good example of that because it
4:35
leverages the strengths. Sometimes we we have the
4:39
tendency to focus on the deficits and looking at the
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strengths was really helpful not only for herself but for myself
4:49
as well. And it gives me the purpose
4:52
within the community context, especially now that I'm running
4:55
my own community interest company.
4:57
So if you would like to connect, here's here are my contact
5:02
details. The QR code will take you to my
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link tree. I still do not have a website.
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It's work in progress, but I'm on social media.
5:10
So feel free to reach out. I'll be very happy to connect
5:15
and that's me. So now I would like to, as I
5:21
mentioned, I'm the host of of of today's talk and I would like to
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welcome to the stage Professor Claire Mackay.
5:30
Thank you very much. OK, so the format for this
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evening is that we're all going to get a very brief presentation
5:38
and then we'll do a lot of questions and answers.
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SO3 slides is what I was allowed to have and so you'll see that I
5:45
have slipped in plenty of detail into my three slides.
5:50
So I'm a neuroscientist. I have been studying the brave
5:53
for 30 years. I've studied a whole range of
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different diseases and disorders over these 30 years.
5:59
Most recently, and I can see a couple of familiar faces from
6:03
the our advisory group. I have been studying ageing and
6:06
dementia for the last couple of decades, but for all of that
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time, when I was studying this other sets of diseases and
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disorders that I don't necessarily suffer from, I was
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sitting on a secret one of my own.
6:20
This is a picture of me, a 20 year old picture of me.
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As you can see, I had different coloured hair back then and I
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know that when you look at this picture of me from 20 years ago,
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you don't see anything in particular other than I look
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quite jolly looking at something interesting over there.
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But when I look at this picture, to me it screens out that I have
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failed to cover on the bald spot on the top of my hair.
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There are absolutely no eyelashes on that face and my
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fingers are almost certainly bitten.
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My fingernails are bitten down to the quick and covered in
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painful infections because they always were.
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So I live with something called body focused repetitive
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behaviors, or BFRV's and hair pulling, skin picking, nail
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biting, these are all examples of BFRB's and they are common in
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general. They're even more common in
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people who have neurodivergent diagnosis and we don't know
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anything like as much as we need to about them, partly because
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they're largely very hidden and stigmatised.
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They. So a couple of years ago I
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decided it was time for me to start speaking out about the
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BFRB's that I lived with. And so I kind of went from
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telling absolutely nobody about BFRB's to telling pretty much
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everybody who'll listen about them.
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And so now I use the platform that I have the opportunity that
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I have. And I'm grateful for this one
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this evening to any any chats I get to raise awareness about
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BFRBS, to reduce the stigma and to help people who live with
7:51
them feel a little bit less alone and a little bit more
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understood. And hopefully we change things
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one step at a time. So the research that I'm doing
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covers a wide range of things, but it's really focused on these
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questions. So if you think about the
8:09
process of actually pulling out a hair or picking at a bit of
8:13
skin or biting a nail, it's actually quite a lot involved in
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that. So there's a prehisposition.
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So why me? Why do I do this?
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Why do I do that particular thing instead of something else?
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There's an urge. Like, what is that urge?
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We don't really fully understand what that urge is or what gives
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rise to it, or what makes me want to do it.
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There's the action itself as the actual picking, pulling, biting
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action itself, which obviously is in some way rewarding and
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motivating, otherwise I wouldn't keep doing it.
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There's getting stuck. So I get stuck with my hair
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pulling and skin picking and nail biting and I, I know I want
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to stop, I desperately want to stop, but I can't.
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So what is that? What is that getting stuck?
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And then finally the consequences.
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So there are all sorts of ways in which I feel a bit rubbish
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about myself because I can't control the urges to pick, pull
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and bite. And there's plenty that we need
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to know about that as well. So I don't have time to go into
9:08
this today. But just as a little taster, a
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lot of the previous position is because we're primates and all
9:14
primates pick-n-pull and bite and most animals, there are
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examples across many animal species of over grooming.
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When animals are in distress, they over groom and we're no
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different from that. There are amazing links between
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our brains and our skin. We don't think about them
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because we just take them for granted.
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But for example, all of our emotions show on our skin in
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ways we have no control over. When we're in Barrett, we're
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blush. When we're angry, our hair
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stands on. Our skin is actually an emotion
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signalling system. So perhaps it's not so
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surprising that sometimes when our emotions are packed a bit
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off kilter, something shows up in our skin.
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And for some of us, that feels like an urge to pick, pull or
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bite. We have a trance like state.
9:55
We go into a bit of a dissociated state when we're
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picking, pulling and biting. And that's a bit like when
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you're stuck on the sofa scrolling or perhaps you're a
10:03
shopper or perhaps you're a gambler where all of these
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things kind of put you into a slightly you, you, you're aware.
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It's not that you're not aware, but you're a kind of zoned out.
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And that's the same to BFR BS. And then there's a whole range
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of reasons why it feels bad to have BFR BS.
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And that has to do with the fact that our skin and our hair and
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our nails are a large part of our identity.
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That's all in the book that I'd just written.
10:28
And that's one of the ways you can learn more.
10:31
These are all the ways that you can connect with me.
10:33
I'm the trick Prof on all social media channels.
10:36
My website showed up on the on the previous slide, there's a,
10:41
there are some leaflets outside. If you want to know more about
10:44
BFRBS, there's a book that you can buy called Keep Your Hair on
10:47
Understanding urges to Pick call and bikes.
10:50
For those who are interested in looking for support communities,
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my good friends at BFRBUK and Ireland are a fantastic place to
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go to for information and support.
10:59
And you're all invited to the BFRB conference which will be
11:02
here in Oxford in October this year and I hope to see many of
11:07
you there. Thank you very much.
11:10
Hi everyone, hi Mees Arie, I'm locust doc at the also sent up
11:14
or entered if you are reading. So my research focus is off K
11:19
perception and also the population.
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And when I tell people I do K perception experiments, they're
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like, oh, that's not really me and that can pay.
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Experiments can take many different floors, but here's
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just an example of what I've done in the past.
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So what you see on the left is how I collect your physiological
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data. So when I gave you case stimuli,
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you you should get aroused. So that's how I collect your
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arousal rates. And then on the right is how I
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delivered that PE stimulus. In this case it was an electric
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shock. So I gave you a picture shocks
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and you told me how people it was.
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So that was the setup of the PE experiment that I did.
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And another research focus that I have is looking at individual
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differences within the autistic populations such as Alexitania.
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So Alexitania is a subclinical condition characterized by
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difficulties that are adapted by everyone's own emotions and
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distinguishing body sensations from emotions.
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And it's thought to occur at about 50, up to 50% of the
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autistic population, but only 5% of the general population.
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So when I think about pain experience, I think of it as a
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multi step process. So first you need to perceive
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the pain and process it and then you need to communicate it.
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So if you find your arm on the door or something, you need to
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say out so that the other person can know that you're in pain.
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And then it can probably to the certain health outcomes because
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for example, if you have appendicitis, it usually starts
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with a tummy ache. But if you're not able to
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effectively communicate your pain or describe or identify the
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pain that you're feeling, that might delay the medical
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interventions. And then usually probably
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medical interventions is really important.
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So your condition might worsen, leading to worse health
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alcohols. So in my previous research, I
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looked at how comes from modulation and pain might be
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different for autistic Gables. I looked at expectation effects
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such as placebo effects, so expecting that something will be
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less painful and will make you feel that it's actually less
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painful. And I also looked at health
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outcomes. So we found that autistic people
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were more likely die, more likely to die of avoidable
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causes than autistic Gable. So we found out that at these
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two stages, perception and health outcomes, there seems to
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be differences with the autistic for autistic population compared
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to normal people. So that we wanted to see if
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there will be any differences in pain communications and that's
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our view project. So there's so many different
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ways to communicate pain. So by using pain ratings, but
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also through your physiological response.
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So it can be your arousal like I showed you earlier, or how much
14:04
your pupil dilates. But the current research only
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focuses on non autistic people and they're creating algorithms
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to objectively quantify K. But if we're not including
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autistic people at this stage, it what we think is that it
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could further exacerbate the health inequalities that we see
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in autistic people because we're just we have different ways of
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expressing pain. So like I said, we're at the
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very early stages of our new project.
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There are so many ways you could get involved and I really hope
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that some of you will do. We're interested in knowing
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people's experience with thing, whether it's acute or chronic,
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whether you're autistic or non autistic.
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We're also looking for Co design group members for a new project.
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So they'll love to hear from you.
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And if you would like to be more active participates, we are
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holding a one day workshop sometime in late October.
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So if you're interested participating, we would love to
15:01
care from you. And those are e-mail addresses.
15:04
I did a social media project. I don't have any social media.
15:07
So, you know, it's the only way to get in touch with me.
15:10
But yeah, thank you. Hello.
15:15
Hi, So my name is Alice, Alice Quinton, and I've tried to sort
15:22
of put together some of the experiences I'm talking from
15:26
today. And essentially I did my PhD
15:29
over at Camberwell in London with Francesca Happy, who is a
15:33
lovely autism researcher. And my PhD was really focused on
15:38
making sure that our cellular trauma and also diet speaker C
15:43
was accessible for the city on G poll.
15:45
And we did that in sort of a number of ways using setting
15:48
data sets, quality interviews with teachers, talking to
15:52
clinicians about how they approached us, but they have a
15:55
traumatized or the sick child and they were signed clinic.
15:59
And generally, I mean, the KK message of my PhD was that all
16:02
the expenses need to talk to each other a bit more and as
16:06
well, and the other experience is my current role as a post
16:10
doctoral researcher and at the Reimagine lab.
16:13
So this is Alex, my Pi and we focus on all things mental
16:20
labour dream, but we'll always try and basically bring a lot of
16:23
neuronal agent people into that conversation.
16:25
And I'll tell you a bit more about it the next slide.
16:29
So we our reset is this intersection of how mental
16:33
imagery and mental health come together or and interact with
16:38
each other. So if I was to say to you all
16:42
picture an apple in your mind, the chances are that in some
16:46
that you'll be on somewhere along this spectrum.
16:48
So some of you might see a really clear like you like
16:51
seeing something and some of you might see absolutely nothing
16:54
Fantasia. It's not that, but the chances
16:58
are he was somewhere along there.
16:59
And when we think about mental health and how little and drink
17:03
sex with that, we think about flash tacks and trauma think
17:08
that the worst case scenario in anxiety.
17:11
So we're really interested in that.
17:13
But we want to make sure that we're including urine emergency
17:15
keep running back. But for for a long, long time,
17:18
people have been left out of that conversation due to some
17:22
some views aroused us that have not enjoying imaginative play or
17:26
some there's quite a crowd in this population.
17:29
But with my work with with autistic people, I often hear
17:34
that it's really helpful sometimes to think through
17:37
imagery and to use injury based interventions, particularly if
17:41
you may don't like narrativizing your experiences can be quite
17:45
wise thing to focus on that. It would do lots of different
17:48
things to talk at mental imagery as well.
17:51
And so I just want to leave you with some some opportunities.
17:56
So we have a different advisory group.
17:58
So if anyone in your life is 16 to 25, they inform lots of our
18:04
research. We put a lot of our research
18:05
past them. If you have any young people
18:08
that like photography and want to explore experiences of coping
18:12
with a former, we have a lovely work by the page using photo
18:18
voice so that these are all paid opportunities.
18:21
We have sub compassion with Christy.
18:23
So that's parents, teachers, adult to see youth and this one
18:28
around PDA. So if you are sibling of someone
18:31
who has PPA, this is an interview with Alex and these
18:35
are all lovely pupils. So if this means something to
18:38
you, and yeah, have you been mold?
18:45
Right is so many is up also different types of research
18:52
that's kind of go rounds near a live state that we just
18:56
presented. I am sorry, this is the wires.
18:59
No, Oh no. It's been here.
19:02
OK, I don't know. So now we are going to start our
19:07
our discussion and I have a few questions for each one of you
19:12
and by the entities and curious to to get to learn more from
19:16
you. So I'll start with Claire, it is
19:19
OK. So Claire, as you said, you've
19:21
been studying the brain for 30 years and and recently with your
19:26
experience, your focus is on body focus of your pathetic
19:29
behaviours. And we know that that a strong
19:33
link with and your diversions can easy.
19:36
So what is why is it important to you?
19:38
That's neural energy, people. I mean meaningfully increase in
19:42
your research. Thank you.
19:49
So it's critically important that anybody who lives with
19:56
whatever disorder it might be is given an opportunity to take
20:01
part in research, and that's of course no different for people
20:04
who are neurodivergent than it is for everybody else.
20:08
The BFR BS in particular, well, I'll start by saying that it was
20:12
a surprise to me to find great resonance with the
20:16
neurodivergent community when I started talking about BFR BS and
20:20
started doing this research. Because I actually didn't know
20:23
about the leak between BFRBS and both autism and ADHD before I
20:29
started to do the research. And so it was a surprise, a
20:33
pleasant surprise. And I felt incredibly kind of
20:37
welcomed into these communities because so many people recognise
20:41
that this is a big problem for many people.
20:44
So the, the, the most obvious answer is anybody who's infected
20:48
by something should feel the opportunity to influence what
20:51
that research is. The types of questions that we
20:53
end up asking are much better if they come from people who are
20:57
living with the experience of the disorder itself.
21:01
And then the the last thing I'll say is that, as I said, it was a
21:04
surprise to be welcomed in by the neurodivergent committee.
21:07
But also you learn so much by talking to other people with
21:11
lived experience. And the massive thing that I've
21:14
learnt that comes from neurodiversity or
21:17
neurodivergence is the, is the lesson of language and how we
21:24
can, that we can subtly change our language.
21:27
That makes a big difference to how you feel when you're living
21:30
with any particular condition or disorder or disease or whatever
21:34
it might be. So in the case of VFR BS, I find
21:37
that as somebody who lives with these, that anxiety, my
21:39
shoulders go up when I hear the language of disorder and
21:43
abnormality. And you know, all of the words
21:47
that we tend to use in medical research that come that that
21:50
make me feel the lesser human. And So what I've learned from
21:54
neural divergent communities is the language of difference and
21:58
that we can just say my brain works differently from your
22:00
brain. And that's both are acceptable
22:02
and it doesn't mean mine is wrong.
22:04
So I think those are my sort of first thoughts about that.
22:08
Absolutely. And I think the neural divergent
22:11
myself, you know, even though ASC or or well, ASC, not its
22:19
condition, but ASC, those words, the deficits, moral kicks taking
22:24
over. So that's why I was saying
22:26
earlier that the character strengths product is so
22:30
important and close my heart because that that made such a
22:33
huge shifts even, you know, loving my daughter the best.
22:41
So yeah, I absolutely agree. Thanks, Claire.
22:44
Alice, with your work exploring mental imagery and trauma and
22:51
you're already working, we call the sticky and people.
22:54
How do you adapt your research matters to elimidate neural
22:58
divergent participants and what have you learned from doing so?
23:02
Solova. Yeah.
23:03
So I guess there's a few ways I saw all about this.
23:07
So within my PhD, obviously we're thinking about making
23:10
trauma definitions more inclusive and for neural
23:13
divergent young people. And a lot of the sort of the
23:16
research I did and we set up other people have done and have
23:19
shown that some of these more traditional traumas things that
23:22
we would expect people to be traumatized by our experience to
23:25
unfortunately a higher levels within neurodivergent in young
23:28
people. But there are also this idea
23:31
that we need to start keep taking into account how people
23:33
are experiencing the world and that may change how you think
23:37
about trauma. So we think about someone who
23:39
has really, really sense sensory sensitivities, their experience
23:44
of something that feels quite day-to-day for one person might
23:48
be totally different. So thinking about sort of school
23:50
environments, thinking about sort of transport getting around
23:54
those might be different for someone whose whose experience
23:57
experience is a little bit different to some other
24:00
people's. So it's about kind of being
24:02
inclusive for all children when they're thinking about all my
24:05
people. And then sort of in the work I'm
24:07
doing at the moment, we do a lot of work for that youth advisor
24:10
group in informing our research and how we go about doing
24:14
studies. So, so data collection, how we
24:17
sort of talk people, how we go about interacting with people on
24:21
online and in calls. And, and the real learning has
24:25
been that most of these things are sort of quite sensible.
24:28
So they tend to be pretty, you know, being thinking things
24:33
through beforehand and giving people a heads up on how things
24:35
are going to work. You know, offering people
24:39
breaks, asking people how they prefer to communicate.
24:42
These are all things that actually help me as a researcher
24:45
do my job better. So I quite like them and what
24:48
I'm going to do beforehand. But it also is something that
24:50
makes everyone feel much more comfortable.
24:52
So I think what's been really interesting, I was talking to a
24:55
young person the other day, and they just said the thing that
24:58
matters to me is that you're flexible.
25:00
And it feels like warm and open. And I can change my mind about
25:03
any of these things at any time. And that doesn't feel like it's
25:06
going to be a problem. And that seems to be like the
25:08
main takeaways that there is A1 size fits all.
25:11
But there's certain things that might be helpful for lots of
25:13
different people at different times.
25:15
Yeah. Absolutely.
25:16
And I know if we say is sometimes it's simpler than what
25:22
we think it's and it's a lot easier to represent than we we
25:26
expect. Yeah.
25:28
Thank you. Eddie.
25:31
Your research looks at how old is sick people experience pain
25:37
and candidates pain and fossilized pain.
25:40
Any challenges you have become third in making research
25:43
environments accessible and what's practical changes goods
25:47
would you make to any progress? I think with pain for session
25:54
experiments, people just don't really know what to expect.
25:58
Why I get, I guess that could be set in general with any academic
26:01
research, but with pain we just, I don't know.
26:04
For me, I hear the word pain. I'm like.
26:05
Oh, I don't want to do that. So I think for me, it's just
26:10
about making sure that the process is as transparent as
26:13
possible, making people, making sure that people feel as
26:15
comfortable as possible and, and like Alice would say, like, you
26:21
know, take as many breaks or if they want to stop, they can just
26:25
stop if they want to. But I think those changes, like
26:29
Alice said, just benefits everyone, including autistic and
26:33
non autistic people. And those are like structural
26:36
changes that we can make. But I think I also learned a lot
26:39
from our autistic participants. So for example, one of them I
26:43
have bright red nail Polish on and she said I that's just too
26:48
distracting for me. And then like your perfume is
26:50
overwhelming. So I'm like, OK, good to know
26:53
that I didn't even think about those things before.
26:56
And then because I am doing pain perception experiments, I, I
26:59
think I'm just need to be a bit more aware of like sensory
27:03
differences that Kibo may have. So I think these are like small
27:06
changes that I try to implement as much as possible with, yeah,
27:12
affecting the quality of research that we do.
27:14
Yeah, and it sounds important. And do the real bad trust as
27:17
well that they feel comfortable with you.
27:20
You know, to we know that updated people can be quite
27:24
honest, but you know, think you need a certain land of all
27:26
address to be able to tell you that you're right.
27:29
Names are about like you didn't. So that's that's great.
27:33
OK, and our general question and I will be looking forward to
27:39
volunteers. So we are talking about in the
27:42
city research and we often talk about it, but what that what
27:47
does that actually look like in practice?
27:53
So as I said in my previous answer, the most important theme
27:59
that's required for inclusive research is really good input
28:03
from people with lived experience.
28:06
And that's is something that we we know that that's a good idea
28:11
in general in medical research these days.
28:13
Our funders require us to have input from people with lived
28:18
experience these days. But the truth is that in some
28:23
scenarios, the pressures that were under as academics mean
28:27
that that's that's reaching out for input from people with that
28:30
experience can sometimes be a bit tokenistic.
28:34
It can sometimes be a bit unsatisfying from the other side
28:39
of the table. And I think that there's,
28:43
there's work to do to teach our funders and, and, and to think
28:49
about the, the kind of criteria that we're required to meet as
28:55
academics as needing to include really good engagement and
29:00
involvement of people with lived experience.
29:03
Now, in the case of the work that I'm doing, I have the
29:06
particular benefits that I can bring my own little experience,
29:10
but also and connect it to loads of other people that experience
29:13
through my kind of through that, through that link.
29:17
And so as a scientist, I know how we construct questions.
29:22
And I'm a person who lives with a disorder.
29:23
So I can have a pretty good stab at thinking of good research
29:27
questions that relate to BFR BS, but I never, I would have seen
29:32
that that's enough. I would never assume that I
29:34
don't need to now go and ask a whole range of different people
29:37
with different experiences than mine to make sure that we get a
29:41
good diverse input in that. And so PPI lived experience
29:47
absolutely critical. But I just before I hand the
29:49
microphone back, I will say it does take time.
29:52
It takes time, it takes skill. And I'm super fortunate that in
29:57
my team, we are people who really specialized in, in
30:01
engagement with people, lived experience.
30:02
And yeah, I I think that that needs to be valued more and more
30:07
as we go forward to make sure that we make the mess the best
30:11
of it. Absolutely.
30:14
Anyone else has anything else to word?
30:18
Yeah, I think on that is having those sort of specialized people
30:22
that are going to look after that is really important because
30:26
I mean we've been having lots of conversations around sort of
30:28
instability of academic careers. So if you're on a really short
30:32
contract and yeah, you hold a lot of power as a as a
30:35
researcher in that moment. But yeah, you 6 months time you
30:38
went up a job. So it's sort of trying to make
30:41
sure that that I think we need just need to actually open up
30:44
that dialogue a little bit more and maybe be a bit honest about
30:47
that. And because generally we're
30:49
respecting people as Co researchers and members of our
30:52
team, we should respect people enough to tell them the truth
30:55
about that and to let them into our world enough to be
30:58
transparent about what it is we're able to give and what it
31:02
is we're able to collaborate on. And even if the answer is we
31:07
don't know, we hope that this is going to be OK in the future.
31:10
That just being transpired about that and not just leading people
31:14
on with sort of the best case scenario, I think is always
31:17
quite important as well. Yeah definitely I was just going
31:22
to to to where that that is about.
31:26
I think we've discussed this neurologistic of strikes.
31:30
They need to find a little people with a researcher.
31:33
You know may sound scary title professor doctors and that's
31:37
something I learned you know I'm still a member of of the public
31:41
even more part of the RC but it is happening but it's I love is
31:46
you know to understand that's Claire Airy and are just as
31:52
human as as we all are So yeah that's I think that's very
31:57
important to to reduce that hierarchy of the relationship.
32:03
OK and one final question now looking ahead to to the future.
32:10
What will truly inclusive research look like in 5-10
32:14
years? And if there's anything that you
32:16
could do tomorrow to to improve this world lobby.
32:25
I already have an answer for the second question, but I think
32:30
from my perspective, I think truly inclusive research needs
32:34
including the entire spectrum of autistic people into research.
32:39
So currently, yes, we do and keep you IE work and like people
32:43
for people shared their lived experience, but people who
32:46
participate in my research, for example, they're verbal, they're
32:51
able to commute to the study location, they're able to
32:55
understand the task demands on, you know, give consent.
32:59
They're practical and ethical considerations around this.
33:01
And I, I know that that's only a very small subset of the
33:06
spectrum. And then I, we've talked about
33:08
this, well, how, how do we include non verbal people and
33:11
like non verbal forms of communication or pain, for
33:14
example, because, well, a psychiatrist was telling me that
33:18
an autistic person was referred because of a solid change in
33:21
behavior and their parents are really worried, just turned down
33:24
that they had a broken bone and they were in so much pain.
33:27
So I think that just shows like there's so much still to do.
33:32
And I don't really know how to make sure the entire spectrum of
33:35
people or autistic people are included.
33:38
But I think right now we ask people to come to us and perhaps
33:41
we need to go to them. Do we know how we do that from
33:45
in the current situation? But yeah, that's what I hope
33:47
it'll look like in the future. And I'll just add to that that
33:57
inclusivity is everything, not just neurodiversity.
34:01
What do we think about inclusivity?
34:03
We also obviously we think about gender, we might think about
34:06
socio economic status, we might think about race and culture and
34:09
all of those things. And so taking everything into
34:13
account, trying to take everything into account would
34:18
explode our brains every time we try to make any decision.
34:21
And so we have to find a balance.
34:23
A sensible balance has to be reached.
34:25
Otherwise we'll need everybody to put into everything we do
34:28
before we make any progress. So we need to be mindful about
34:32
making sure that we don't exclude people, but also it has
34:36
to be balanced with actually getting some research done.
34:42
However, I think, I think where we want to be moving to is that
34:46
most I, if I understand correctly, most research in
34:50
neurodivergence to date has been sort of research that's done in
34:55
a group of people who might have autism or ADHD or other forms
34:58
of, of neurodivergence. And, and I think that going
35:02
forwards, just like the research that you've heard about today,
35:04
Aries research is a great example.
35:06
It just needs to be, it needs to be brought research.
35:10
The research that we do needs to be broadened out so that when
35:14
we're we're researching anything, we have a bit of
35:17
information about somebody's neurotype that's incorporated in
35:22
just as we would collect age and sex and all of those other
35:24
things that we might collect about somebody so that we don't
35:27
miss out something really important that might be there in
35:30
the data because we just haven't asked a biotic.
35:36
Yeah, I agree with both, both you on all those things, on all
35:39
things. But I guess kind of for, for in
35:43
our research and in sort of mental health research, we've
35:47
got all these wonderful, really enthusiastic people that, that
35:51
want to get involved and they're really, really helpful.
35:54
But we're really, it's the people that aren't so keen.
35:57
So we've got a lot of people who are really keen on psychology
36:00
and we've got a lot of girls. And what we're really trying to
36:04
reach is the people that aren't necessarily going to uni to
36:07
study these things that the young boys really are who we're
36:11
really trying to reach. So we're doing some work with,
36:15
with our sort of honorary in our in our supervisory group to try
36:20
and just think about like how, how can we make things more
36:23
interesting or make things like you said, go to them
36:28
essentially. Because that is a really, that's
36:31
a real missing part, I think, particularly in participatory
36:34
research and mental health more broadly, and also in the autism
36:37
research as well. Thank you.
36:41
So I think we can now welcome any questions from the IS.
36:53
Recommend on. I can do this one of it I was
36:59
super a. Is there research only focus for
37:03
adults or adults can taking from my that experience with my own
37:09
kid that I was wondering if I'd also learn to react longly to
37:15
painless a bit with the desert sort of load the hero components
37:19
of it and with it looking at children will be more raw in
37:25
terms of. How they respond, how they
37:27
perceive. Yeah, So my class experiments
37:33
have only been on adults for consenting issues, but we are
37:39
our next project. The communication of hey that
37:41
I've talked about, we're taking a live course of birth still.
37:44
We want to hear from young people, their carers, adults,
37:48
older adults, because I can get right, there's probably a
37:51
learning aspect. We're just about to do a pain
37:53
learning paradigm now. So that is definitely something
37:58
we're looking into. But I don't really have a
37:59
concrete answer, but I'd love to hear more from you if you're
38:03
interested in participating or share your thoughts.
38:12
Skin Keep. And a question from like a
38:25
personal point of view from someone else.
38:26
Keep going to the doctors for things like pain, you know, a
38:30
picking skin picking da da da da.
38:32
How long do? You think it's going to be that
38:34
the, you know, going to the GP will not catch up, but you go
38:37
there to be understood as a border.
38:41
You know what's going on back then.
38:42
Then just Hannah me. Oh, it's just that.
38:44
And off you go. And you've come back again and
38:46
again and again. So I find that's all good.
38:48
I don't have any of it. And also Grievous, if you're
38:50
back and forth for the same thing and nobody's taking you
38:53
seriously looking at your divergent.
38:55
So I wonder how long that's going to take to catch up.
38:56
My guess? Yeah, Tricky 1 And I think,
39:03
well, first of all, I, I kind of I have some sympathy with GPS
39:06
whose job it is to know everything about everything.
39:10
However, there are some aspects of our mental health and
39:13
well-being that they are really still lacking any knowledge in
39:17
and BFR BS are massively lacking from medical knowledge in in
39:21
general. And I think that the so, so you
39:25
know in 8 minutes that you get with the GP, the GP has just got
39:28
to deal with whatever it is that you brought them today and they
39:30
don't want the list, they want one thing to deal with.
39:34
And so I think that there is a sense in which we, but with help
39:40
could potentially be able to take more responsible, not more
39:44
responsibility, but to learn how to put the picture together
39:48
ourselves to a certain extent, I mean kind of as what specialists
39:52
are for, but your access to get to both this is tricky as well.
39:56
But so in, in relation to things like the FRBS, there's a huge
39:59
awareness raising element to that, that that needs to happen.
40:02
But the way in which I think that works best is to really
40:06
focus on distress first. So psychologist, psychiatrist,
40:12
GPS will have in their head, if not actually on a piece of
40:16
paper, a kind of checklist of things that they work through.
40:19
And if your thing isn't on the checklist, then then then they
40:22
don't really know where necessarily where to go with
40:24
that. And that's, that's too broadest
40:27
tweaking statement. But you get the the general
40:29
idea, whereas the the idea of starting with tell me, tell me
40:33
what's going to be and tell me what's bothering you the most.
40:36
What's where is your distress most focus?
40:39
And that's not really the way that it's necessarily done at
40:42
the moment. And I think a distress first
40:44
approach and then trying to map and all of those multi faceted
40:48
things that so often show up when people are in distress,
40:54
bodies will manifest that distress in a whole range of
40:58
different ways. And so you will just end up with
41:00
a list of a list of things that the GP doesn't quite know how to
41:03
put together. But we need to understand the
41:06
the system as a whole and the way that it is responding to
41:09
fundamental distress and to try to and it's not a right answer,
41:13
but. Yeah, I think it's a frustration
41:19
that a lot of people have and it's definitely a lot of the
41:22
works that from the lab that I was in making, a lot of the
41:26
projects were around. We're studying this thing, you
41:29
know, to see people or this thing in the HD and a lot of the
41:34
outcomes from the projects where I were training off
41:38
neurodevelopmental services, but the thing that seemed to be more
41:41
impactful was training up the other services.
41:43
So Ivan, the mental health service, making them more
41:46
neurodiversity aware or looking at DP services.
41:50
So we have research. That's because an older age.
41:54
So it's actually more impactful to go to the people we
41:57
specialize in, older age adults and teach them about autism,
42:01
neuroversity of vermin care. So I think that are little
42:04
things happening just because everything's so siloed, it takes
42:08
a while to get back. But I think there are some
42:11
projects around working on what rules for GP training and for
42:16
training within all these different specialisms.
42:18
They're trying to basically add a slideshow on their diversity
42:22
within training packet packages, I think.
42:24
So hopefully some positive things are coming.
42:37
Money was sure and I know how to form this question, but I'll
42:39
have a go and. A lot of.
42:43
Neurodivergence has massively different diagnostic rates, so
42:49
ADHD, autism. The diagnostic rate The
42:53
diagnosis rates in. By age and by socio economic
42:58
groups etcetera are hugely different.
43:01
When you say you're including say autistic people in research,
43:05
I assume you're including diagnose autistic legal research
43:10
which is a pre skewed sample of autistic people.
43:14
Is that just a problem you live with or you have a way of trying
43:17
to address that? Problem.
43:18
So yeah, that's a really good question.
43:21
And in the majority of our studies, we do accept people who
43:24
are self diagnosed and we tend to ask this question.
43:27
And again, it's not perfect and people will critique that as
43:30
well. But we often will ask kind of,
43:33
OK, do you consider yourself to be autistic?
43:35
And then we'll have probably about five options and it will
43:37
be I'm on a waiting list. I'm waiting to be on waiting
43:41
list. I'm, I've gone, I self identify
43:43
and I'm not interested in a waiting list.
43:45
You know, so we, we can sort of get that to that granular level
43:48
of where people are AT. And then we can essentially what
43:51
we tend to do is we run the analysis or look at the results
43:55
of the study. And then we take out all the
43:57
people that are at various levels of those that some
44:00
diagnosis to validate that we can include them within the
44:03
research. Or we do things like look at
44:06
trait measures and we compare the groups that we go a kidney
44:09
self diagnosed. These are not these, these are
44:11
diagnosed by professional. How are they comparing?
44:14
And we look on a trait level no significant different crate
44:17
that's put more in a group, there's no just see people
44:19
together. So I think it is definitely
44:22
something people are finding more difficult particularly kind
44:25
of as as we are getting a broader spectrum I think at the
44:29
moment and also waiting lists are getting much longer.
44:33
But yeah, that's tends to be how we're addressing it unless it's
44:37
a really clinical study, then we might ask people for that
44:40
diagnosis as well. I don't know how you how you
44:43
deal with it. Yeah.
44:45
So we include anyone who's some identify us being autistic and
44:49
we do, we collect trade measures.
44:51
So for me, because I'm interested in individual
44:56
differences, I collect by autistic trades or like spider
44:59
trades, anxious trades. And we used to collect Adams
45:05
measures, which is more about diagnostic criteria for autistic
45:08
people. That score really varied whether
45:14
even if you're a diagnosis, autistic, had a clinical
45:17
diagnosis of autism, most people didn't meet the cutoff when we
45:20
did the test. So I think we kind of let go of
45:23
that and tried, decided to take some identification approach.
45:27
And that's what we mostly, I did a big data set analysis and
45:32
that's what we did there as well.
45:34
And just because, like you say, there's a massive diagnosis
45:37
issue with older adults but also with younger females as well.
45:51
It's working. Well, first of all, thank you so
45:54
much for certainly formatted discussion.
45:57
My question is and there if you will I get my thoughts but so I
46:04
am kind of looking at. Research neurodiversity and
46:09
neurodivergence, and it does look like it's still catching up
46:13
compared to the rest of research.
46:15
It's psychology. Neuroscience.
46:17
Health. And I'm also thinking about
46:21
research on Women's Health that is also catching up.
46:24
And then we have the EPAD that neurodivergence has on Women's
46:30
Health and derail some diagnosis etcetera.
46:34
And then I look around the room and I see.
46:37
Mostly women. Thank you to men who.
46:39
Joined us well. I'm just wondering if we will
46:44
always kind of be siloed or if there is a way to bring
46:50
awareness to to other researchers.
46:54
Who might not be in groom who might might think that research
46:58
about neuro diversity, research about Women's Health is maybe
47:02
not as important and. Then how to just?
47:06
I'm trying to think of what I'm trying to say.
47:09
Just how to ensure that there is just?
47:12
More visibility and people see the importance of this type of
47:17
research and we can bring it outside of the echo chamber I
47:21
feel exists now. Hopefully that makes sense.
47:27
Yeah, that makes perfect sense. And I guess there's I guess
47:30
there's always. Well actually I'll start by
47:33
saying that academic researchers are subject to fashion and
47:38
trends in just the same way as everybody else is.
47:43
And so as somebody, so I'm trying to get everybody who will
47:48
listen to be interested in body focused repetitive behaviours.
47:52
I look at autism and ADHD research as being miles ahead
47:57
because it's got a couple of decades on BFR BS as in terms of
48:00
people's awareness and understanding.
48:02
And it it with all of these things, really what you're
48:05
talking about is stigma. So some things are more
48:07
stigmatized than others. And, and pulling something out
48:12
of the darkness of, of Sigma, it's being stigmatized takes
48:17
time and it takes, you know, up to people's voices.
48:22
Lots of people standing on lots of stages talking about it.
48:25
And for autism, well autism is ahead of ADHD, so autism had a
48:30
depot or two on on. ADHDADHD is very fashionable,
48:35
very trendy. Never lots of people doing ADHD
48:38
research, but it's nowhere near as advanced as as autism
48:41
researches things like anxiety and depression.
48:44
Got a couple of good decades on on AD on autism research So
48:48
there's the way the research is and how much we understand about
48:51
the the impact of things like vision and deity is a little bit
48:54
ahead. But you're absolutely right that
48:57
we are always fighting a kind of uphill battle to pull things out
49:00
of the shadows and get them into public prominence and all of
49:04
these things intersect with each other.
49:05
And so when you add on mental health and Women's Health and
49:11
intersectionality with all sorts of other phase, it is a constant
49:14
battle to get the attention that these things need.
49:17
And just like the, the question that we asked that with the
49:20
answered earlier, the fact that these things do have an additive
49:24
multiplicative effect. And in the end, what you end up
49:27
with is a body in distress in in some way is is where we need to
49:32
cut our focus, I think. Sorry, I just want to get a
49:37
quick shot to carry. Who does I really.
49:39
Yeah. It was really cool research on
49:42
one's pain. And I think you're looking into
49:45
your diversity as well. Sorry to put you on the spot.
49:50
Yeah, I was going to put it your way as well.
49:53
I guess kind of one of the kind of the practical things is
49:56
around funding as well. So a lot of funding is now
50:00
becoming quite project LED. So we need to be thinking about
50:04
contacting policy makers and getting on the agenda there so
50:08
that there are funders then beside that, that is something
50:12
they want to be funding and that is on the agenda.
50:14
And then we can kind of start getting that research going as
50:17
well. But obviously there's some
50:18
wonderful research already getting done at the at the back
50:20
of the ring as well. But yeah, hi, thank you.
50:26
Thank you for the talk. It was really great to hear all
50:28
your receptors. And I have a question from more
50:31
like a cell biologist perspective and.
50:34
So starting my PhD right here this year, looking into genetics
50:39
of. Fine neurodevelopment and some
50:42
they're interested in a gene that's variance of the gene is
50:46
going to distant and different sort of neurodevelopmental
50:50
differences. What I'm seeing often literature
50:54
is the term your developmental disorders and you can touch some
50:58
how you think that maybe focusing on the tones so you're
51:02
like that might not be as beneficial.
51:04
So what do you think is like the most respectable way?
51:07
A sort of yeah. What's your opinion on using
51:10
this term and how should we so be referring to?
51:13
This in research. Yeah, thank you.
51:17
It's a, it's a really good question.
51:19
And I feel that we're in the stage of transition with the use
51:23
of these words and yeah, the disorder model, the deficit
51:28
model that we have used for decade.
51:30
I've I correct, I catch myself using those words all the time
51:34
because they're really, really in our lexicon.
51:37
But I don't think we need them. I don't think we need them.
51:41
I think we can describe all the things we need to describe
51:43
without using that deficity language.
51:46
So for example, what we mean when we say the word disorder is
51:51
that something has met a diagnostic threshold.
51:54
So with lots of things, pain, anxiety, depression, whatever
51:58
BFR BS, whatever it might be, these are things that everybody
52:02
feels, everybody experiences. But if you're experiencing them
52:05
beyond diagnostic threshold, then we call that a disorder or
52:09
a disease or whatever it might be and we treat it and therefore
52:13
it we're, what we're looking for is a way to treat it.
52:16
And I think that that's still OK.
52:19
Because if I think again about BFR BS, whether they're common,
52:22
we all have them, everybody does them.
52:24
But some people are have clinically significant distress
52:27
and so they reap the level of a disorder and they deserve the
52:31
attention and that the word disorder against people.
52:34
But I just think that we don't need the word disorder to
52:37
describe the we don't need the word disorder to describe the
52:40
behaviour more generally. We certainly don't you need the
52:42
word disorder. If what we're talking about is
52:44
traits, we don't need the word disorder.
52:47
We don't need to use, We often default to using that disordered
52:53
language when actually there's a perfectly respectable decent
52:56
alternative word that we can use instead.
52:59
And difference is the 1st place that I would go to because
53:02
neurodevelopmental differences sounds sounds pretty similar,
53:05
but it isn't offensive. Thank you so much.
53:11
Hello, thank you for the talk. That was very interesting.
53:14
I have a question about the methodology that we use in
53:19
research involving neuro diversion people and well.
53:25
We developing people. So we always use sort of so
53:33
proposes measures and I don't know.
53:38
Maybe we use a scale to ask them to rate certain aspects of the
53:43
ambitions. Sometimes we ask them to
53:46
describe it and I feel like. Especially with neurodi budget
53:52
he will that might be a barrier. And in my in my project as well
53:58
I work on net ambiguity S palm and got some described emotions
54:03
and rate how intense they. Are.
54:06
Do you feel like this is a barrier?
54:07
And then how do we move forward? Sounds of you Alexa, by reason.
54:13
I mean, yeah. Well, yeah.
54:17
So I think that's what led me to the Communication of Pain
54:21
project. So when we do pain reception
54:23
experiments, you need to calibrate people to pain stimuli
54:27
level so that, you know, we're not giving people, like very
54:31
intense shocks. And I just found that I, I just
54:36
really couldn't calibrate Alex panic people and autistic
54:40
people. For example, I had a participant
54:42
who said, OK, I have, I broke two of my bones.
54:47
And for me that was 8 out of 10. And you told me that I need to
54:51
be calibrated to 8 out of 10. So it's not the amount of pain
54:54
that you're expecting me to experience.
54:56
And I'm like, no, that that is this is research paying, that's
55:02
clinical pay, that's different. And I think we had to have a
55:04
discussion about how that's different.
55:07
And he was like, but like, how do I know the worst pay
55:09
imaginable if I've never experienced it?
55:11
I don't know what that is. So that's what where the
55:15
communication of pain came from. And I think that's why I'm
55:17
trying to get like various measures of pay experience.
55:20
So like pain scale, I think we do need to have it in some way
55:24
for clinical purposes because like Claire said, you don't have
55:27
8 minutes with AGP and then you need to give some kind of
55:30
indication of how much pain you're in.
55:32
But then we could think of like look at things from like your
55:37
pupil dilation, like skin conductors and see if they
55:41
converge because we assume that they converge, but we don't.
55:46
I don't think we know that's the case.
55:48
So that's that's the experiment that I would try to do.
55:52
But yeah, it doesn't exactly answer your question.
55:54
But yeah, that's I am facing the same poll.
55:57
Thank. You.
55:59
Yeah, this is probably, I don't know if you're experiencing this
56:01
in your research, eventual imagery, but we do a lot of
56:04
asking people to rate things from zero to 100.
56:08
So we get them to bring to mind whatever they're worried about.
56:13
And we asked them together how they did it.
56:15
Is this from zero to 100? And it's been really interesting
56:18
with the Naruto Legend participants because a lot of
56:22
the time they're feeling well, I don't know, like it's bad, you
56:25
know, and sometimes it is kind of this experience of kind of
56:28
going well. Is that a scale that actually
56:32
works in this in this set, in this group people.
56:36
So it's been really interesting doing feedback interviews at the
56:38
end of these studies and asking people, what was your 50?
56:42
Was your 50 like a zero and then we're going negative and we're
56:46
going positive. Or was your 50 like halfway up
56:49
or like, So I think kind of it's been really interesting just
56:51
taking the time to have a little chat with people afterwards and
56:54
be like, well, how did you perceive that scale?
56:56
Like what was it that we that we did?
56:58
So I think with all of this, it's just asking the question
57:01
and sometimes I'm not just assuming people are interpreting
57:04
things the way that you think mail like your example is once.
57:10
Did you? Or I can't see it.
57:16
Almost time seemin, Sir. Blind last question.
57:23
Last, last question. You.
57:25
Hi, thank you. Very interesting talk.
57:29
I'd like to ask, we covered it a little bit, but I would like to
57:35
go back to language and your diversity.
57:40
And at this point within neurodiversity, we don't trust
57:46
me, bought is of the ADHD in OCD, we need Tourette's
57:51
syndrome. Now these are conditions that
57:54
have very different needs, very different.
57:59
I think there. Was an old school that came out
58:01
very recently about how different conditions like to
58:06
identify to autistic people like.
58:10
Autistic people, people with Tourettes, prefer language.
58:14
At where they talk about the person.
58:16
Before their condition. Do you think there is this
58:23
danger? That.
58:25
We model them all together when we used the term your diversity
58:32
and do you think to a certainty. Gimme is still just autistic
58:38
people that use that specific term.
58:44
That's a really good question and it was an interesting paper.
58:48
I mean, the general rule I go by is just respecting whatever
58:50
other people want to use. So I think it would be really
58:54
silly of me to come around correcting favorite book of
58:57
other own experience of neurodiversity.
59:01
But yeah, it depending on what we fit under that umbrella, kind
59:07
of depends how we how we look at this.
59:08
So I did a study where neurodivergent was I think it
59:13
was ADHD, autism and and that was the relay of that.
59:18
But as I said, sometimes that might include sometimes people
59:22
put depression and anxiety under under their diversity umbrella.
59:26
You know, when we talk about neuro diversity, that is as a
59:29
whole set of people. So when we talk about people
59:31
being neuro diverse that include people that don't have these
59:34
experiences as well. So I think that's a jumbled way
59:38
of saying that we should just respect what other what
59:40
individuals are using. And I also just want to say,
59:43
like, I kind of chose to talk before where people from
59:47
different countries that are not listing countries use different
59:51
ways of describing neurodiversity or autism or ADHD
59:57
and, you know, have people in the comments being really upset
1:00:00
by certain, certain expressions. But then we take this really
1:00:03
kind of Western view of how we've conceptualized it, and
1:00:06
then we put that on in the countries as well.
1:00:08
So there's quite a lot of layers to how we unpick that.
1:00:13
But yeah, I know that's not very simple and straightforward
1:00:15
answer, but it's definitely something I think we're going to
1:00:17
continue to think about. Yeah, yeah, yeah.
1:00:21
The one that's always cited is I think Belgium is like the
1:00:24
opposite. So they did the same study that
1:00:27
in the UK people prefer identity 1st and language.
1:00:31
They did the same study, I think in the Netherlands and Belgium
1:00:34
and found the absolute opposite. And then we also have to take
1:00:36
into account grammar and language and how that works as
1:00:39
well. So it's all the best, but I
1:00:42
think as long as we're being respectful and yeah, as I think
1:00:45
Claire said, not always looking at the desert, it's about what
1:00:48
it used to be, individual pests. I think there's all the time we
1:00:56
had a left. Thank you so much Claire, Airley
1:01:00
and Alice for for being here and thanks to everyone who joined us
1:01:09
and have a rest of a good evening.
1:01:12
I hope you enjoy it. We might be here for a few more
1:01:15
minutes or do you want to come and see?
1:01:16
Yes, please do. Otherwise Hamilla leaving and we
1:01:20
hope to see you at the park too. Thank you.