Transforming Behaviour Webinar Series - Supporting Autism and Anxiety
Transcript:
OK, well, welcome. Thank you so
much for coming. My name is Ella.
It’s so lovely to have you here with us.
We’re talking about supporting
autism and anxiety, and I was really
getting into the weeds when it comes
to the research and the.
I guess the experiences that autistic
people are sharing now about anxiety and
those sorts of things. And I came across
this statistic which really surprised me,
which was that it’s estimated that around
50% of autistic people will
develop clinical levels of anxiety
either through childhood through
adulthood.
And I guess what I wanted to
talk about today is what’s going on
there, what is underlying it in terms
of neurobiological mechanisms,
but also. What’s going on in terms of the
assessments? Are we assessing people
appropriately? And then what are
we going to do about it?
You know, if you or somebody you care for is
struggling with anxiety, what are your options and
what are the best practises to supportthat
person?
So before I start, I’d like to acknowledge the
category people of the ER nation on whose
land I live and work and from where this
webinar is being broadcast today, and
also pay my respects to any Aboriginal or
First Nations. People present today.
Now you might be wondering. Who is this
person? Why is she talking to me about
anxiety and autism? Um, my name is
Ella. I am the chief clinical officer
here at Transformer Life. I’ve been
working alongside autistic folks and
their families for about 10 years now and
I’m really an explorer of all things
neurodivergent and anxiety support.
I am not myself
disability identify. I don’t. I don’t.
Pretend to speak for autistic people, but
this this is based on my own research.
My own kind of qualifications and those
sorts of things, and also the shared
lived experience that. Autistic
people and families with autistic
children have generously shared with me.
So let’s get started on
what is anxiety. Now? That sounds like a
dumb question. I’m sure in our
post COVID world, everybody’s pretty
familiar with what anxiety is.
I’m talking from a diagnostic perspective
and from a clinical versus subclinical
perspective. What does anxiety look
like? What are the things that we need to
be worried about, and what does our? OK.
Look like in terms of typical versus
atypical experiences
of anxiety, so. The American
Psychological Society describes the
experience of anxiety in this way.
Anxiety is an emotion that’s
characterised by feelings of tension,
worried thoughts, and physical changes
like increased blood pressure, decreased
pupil size, and increased muscle
tension. Now I think that anxiety is
something that most people living in the
modern world are pretty familiar with
two a greater or lesser extent.
But people with anxiety disorders
usually have really recurring intrusive
thoughts or concerns, and they may do
things like. Avoid situations out of
concern and they may have persistent
physical symptoms like excessive
sweating. Trembling,
dizziness or rapid heartbeat that has
nothing to do with physical
physiological expenditure, if you will so.
There’s a few different types
of anxiety disorder, but I think it’s
important to sort of tease apart when
we’re talking about a person’s experience
of anxiety, especially when that person
may have a typical neuro
type presentation. So there’s
your generalised anxiety , disorderwhich
is your excessive, worrying and
apprehensive feelings
occurring more days than not. It’s
not. Connected to any one
particular thing, it’s not directed
towards anyone particular type of
experience.
It’s exactly what it says on
the tin. It’s generalised. It’s just a
nice and nice smooth patina of anxiety
across everything. But then you have your
more specific anxiety disorders, so
things like a panic disorder.
That’s when people are experiencing what’s called
panic attacks, which are a physiological
manifestation of really acute
anxiety. And then you have something like
OCD. So OCD is a type of anxiety disorder
that’s characterised by, obsessions
which are the thought patterns that a
person could get themselves looked into,
and then the compulsions, which are
the beh aviours that a person engages
in to try and absolve
the anxious loop that they’re in in their
head.
That’s one form of anxiety.
Another form of anxiety could be
social anxiety, and that’s something that
might get might look
particularly different for an autistic
person. It may not. But social anxiety has to do with feeling a particular acute sense of
anxiety when it comes to social
engagement, social communication, and
interacting with other people. So.
There is a generalised um.
Kind of set of criteria for anxiety that
has historically been used to.
Diagnose people. But there’s been a lot
of feedback from the adult autistic
community and also in the research, just
talking about, OK, well, does this fit
us? Does this reflect our experience? Is
this something that’s even relevant or
applicable to us?So that’s what we’re
going to talk about next. So sorry, can
I just interrupt? Yes. So one of the
things I think that would be useful too
is to say.
People with autism and
their families, they do feel as a
carer that. I believe that I know that the
families often also have, you know, may
have autistic family members as well. But
even if their parents aren’t autistic, I
feel that from what I’ve seen that
family members also have an increased
level of anxiety due to
the, I guess, disconnect with the rest of
the, you know, peers that they
might have been associating with before
having children with a disability. Then
you add that disability and it just increases.
The anxiety levels of family
members as well, without sometimes, I
guess even without them even realising.
Yeah, yeah, absolutely. I mean, is that
something that you see a lot in
peers, as in peers being
other parents or carers of autistic
people?Yeah, yeah, yeah, I can
imagine that. But I think, yeah,
sometimes they just so focused that they
becomes too overly super
focused on their child, they actually
forget to consider themselves.
Yeah, I say that a lot. I think that a lot with
moms and dads. But a lot of the time,
mums who lose themselves in the process
of trying to support their child. Yeah,
absolutely. There’s been some really
interesting research that’s been
gone, gone on. And I know that, Tony.
Wood has done a lot of research into.
nxiety support for autistic people
as well as their families and. Something
that I find really interesting is that.
The symptoms that autistic people talk
about when they talk about their anxiety
and this this symptoms that neurotypical
people talk about when they talk about
their anxiety like this glorious
Venn diagram. So like there’s some that
are shared, there are some that are
really that are really autistic
in their in their expression and then
there are some that are really
neurotypical in their expression. And to
me what’s amazing is that we see the same
in their brain.
Morphology and in the brain function in the
research. So the amygdala, which is like this
little kind of looks like an arm and in the
middle of your brain.
It’s it’s responsible for processing fear
and also.
Associated with anxiety and and that sort
of thing and the structure.
Kind of assesses your threats but then
also processes the fear and there was a
really cool. Kind of. Bit of not
F MRI, just MRI scan done,
which is that one that looks like you’re
going into a sausage roll. And
they were talking about UM.
Yeah, so they had 53 autistic kiddos,
half of whom are
experienced anxiety and half of whom
didn’t. And the autistic
kiddos who also experienced anxiety had
some sort of. Had a really
different looking and functioning
amygdala. So not only were they difficult
from a neurotypical control control
group, but they were also really
different from a non
anxious artistic control group which I
found super interesting. And it also has
this overlap.
This same sort of Venn diagram overlap where it has
some some bits of function the same, some
bits that function totally differently,
but there is that little overlap in the
Venn diagram similar. To the
symptoms. Anyway,
just be excited about it. Sorry.
There were autistic kids who were
experiencing anxiety had
decreased right amygdala volume compared
to the other two groups, and those other
two groups didn’t differ from each other.
So there was more commonalities between
the neurotypical control group and the
autistic non anxious group than
there were between the anxious group.
And the non anxious or sistic
group. And so those findings kind of
suggest that there’s. The
neurodevelopmental
differences in the trajectories from
autistic children who are either anxious
or not anxious are as different
as between a neurotypical
control and an autistic person and I
think. That the important take home
message from something like that is that.
There’s kind of there may be different
neurobiological responses to stresses
for anxious autistic individuals,
and that that needs to be taken into
consideration when we’re doing things
like assessing, treating,
supporting those people. The.
I think one of the main questions that
people have when they have a child who
may or may not have anxiety
Co occurring with the autism is how do we
tell? How do we tell? Especially they may
be nonverbal or non speaking. How do we
tell if they are struggling with this?
And you can see on the screen here we’ve
just got our like generalised anxiety
disorderchecklist. This is typically
something that you’ll get handed and I
know parents and carers of
kids. With autism
will assign, I want to say like
approximately 5000 of these over the
course of their child’s childhood. These
self report questionnaires, checklists,
those sorts of things. So
this is something that you would
typically get given when you go into a
doctor’s office. You might be seeing
your paediatrician or yourGP, and you
say, I think my kid might have anxiety.
That would be this checklist. OK, so it’s
got these things. Do you feel nervous or
anxious or on edge most of the time? What
does that mean through an autistic
person? What is their experience
internally of that? Do you have trouble
controlling your worry? OK, well, what’s
an autistic person’s experience of worry?
So I think it’s important.
To think about the fact that one of the
techniques that we that well,
we being you’re a typical people
used to monitor our affective state
is to sort of listen to our
body. And what that means is you’re
monitoring your interoceptive cues.
So noticing when we’re feeling agitated,
when our muscles are twitchy, if our
heart rate is elevated, but
autistic individuals may not be.
Experiencing interceptive cues as
readily or in the same way or at the same
level. So how can a person who
has autism and anxiety respond to a
checklist like this and have it mean the
same thing? If they may
be? Maybe they don’t experience the same
physiological anxiety symptoms
that somebody who’s neurotypical and can
relate to something like this anxiety
disorder checklist.
Can relate to so.
Something that that the research has
done a really nice job of pulling apart
is getting an insight
into. Just like this Venn diagram here
has where the anxiety.
Symptoms are shared where they’re
desperate and where they’re overlapping.
And I think it’s really helpful
to talk about the specific anxiety
symptoms that are very much on the
autistic anxiety end of the spectrum. So.
The ones that I’m gonna read this from
the research here so.
Hmm. Something that’s
been really.
Really strongly linked to
autistic anxiety is difficulty
in recognising and understandingone’s
own emotions, which is called Alex
Kymia and something that’s been
identified as affecting about 65% of
autistic individuals and has been
reported as a key.
Mechanism in the development of anxiety
for autistic people not being able to
understand what’s going on for themselves
or having a way to understand their own
emotions. So I think that
that’s an important.
Did you stick to remember that when a
person is coming into this kind of a
checklist, but they may have the
autistic experience of Alex Clinia,
how can they relate to something like, do
you have control? Do you have trouble
controlling your worry? It’s not
meaningful to them. That’s something that
isn’t going to serve them when it comes
to understanding their support needs.
So let’s have a look at the I’m just
pulling up in the research.
Hmm. You’re the symptoms and
difficulties, OK?Some of the
symptoms that autistic folks with anxiety
struggled with that a neurotypical
anxious control group didn’t struggle
with were primarily that alexithymia that
I talked about not understanding their
own emotions. Sensory sensitivities. We
all know that’s a big one, Negative
social interactions with others when it
isn’t a specific social anxiety disorder.
Um. Rigidity and
insistence on sameness as a coping
mechanism. So I thought that was
interesting that that was such an such a
specifically autistic way to.
Experience anxiety that wasn’t shared by
their neurotypical control group. There
is a really interesting new clinical tool
that is similar to this. It’s a
checklist, but it’s a little bit
more in depth. Being
developed at the University of Newcastle.
That’s specifically to
help families of autistic children
assess for anxiety.
So it’s not to do
with this generalised anxiety disorder
checklist, It’s specific to the
experience of anxiety. The autistic
children and in the families of autistic
children. So if that’s you,
what can we do?Of course, the first
thing is. Observe your
child. Observe your child. See what
patterns you notice, See what helps, See
what doesn’t help. See when things get
worse, when things get better
and get them assessed. So
not everybody has the same access to
assessments, assessment tools, health
things, health anxiety, health
clinicians, those sorts of things.
But there are really strong tools
that you can access either online or
free. So there are really
great programmes out there that are
based on what is kind of the gold
standard clinical tool for managing
anxiety and a neurotypical person, which
is cognitive behaviour therapy or or
CDT. But it has been
reflected both in the research and and in
kind of adult autistic experience that
there may be issues with
CBT as a management or support.
Strategy for an autistic person
struggling with anxiety specifically
because. It focuses a lot on.
Like a kind of almost like an imagination
element that some people might struggle
with. But there’s been really great work
done on modifying
CBT for autistic experience so that it’s
more relevant and more helpful.
Specifically, there is a programme called
Facing Your Fears Adolescent
version, which was developed at a
school in Singapore where they had
really great results, specifically
when. And most helpfully,
because it was implemented with non
clinicians, so it was done by teachers,
by community members, by people that were
in the school community and it
really made a big difference to the
cohort in terms of their anxiety.
Doctor Tony Atwood’s Exploring
Exploring Feelings for Them is a CBT
programme for anxious for autistic
kids with anxiety and that can be done in
school settings as well, which is really
helpful. And something that I found in
the research as well that was really
helpful was that when it
comes to OCD, the main treatment that people
for the most part come up against is the
exposure therapy. So. Rated exposure
to the stimuli.
I’m sorry, that’s for five years, not
five. CD for phobias. Um, but
there was a significant.
Difficulty that autistic folk were having
when it came to trying to get this
help with phobias, which was that
exposure therapy relies a lot on having
an internal like a mind’s eye.
I don’t know how to explain it other than
to say your mind’s eye or your kind of
imagination in your
that you can hold in your in your brain,
and autistic folks are really struggling
with that element of the graded exposure
therapy, but there’s been some really
cool work being done. Using Visual
reality goggles to
help autistic folks to engage with.
Treatments for their phobias that would
otherwise require them to have this kind
of imaginary mind’s eye.
Thing that neurotypical people can have
that autistic people may not have.
So I think there’s lots of good research
and resources out there, but if you’re
feeling overwhelmed. I totally get
it. Um, we’re here to help. That’s what
we do. I love looking into this kind of
thing, so get in touch. I’ve popped some
references here for those of you who are
interested in nerding out.
And now we can go to questions.
You’re nice.
I think I see it OK. Yeah.
Thanks so much for joining me today. It’s
been lovely having you. We will be back
next week with another topic on
supporting behaviours.
