Dr Rachel Moseley: Autistic Voices, Challenges, Joys, and Research Empathy

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Why Not Me? Embracing Autism and Mental Health Worldwide? Before
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reach more families that need to hear these conversations. Joining
us today is a person that is no stranger to
this show. She's joined us a couple of times to
talk about her research. That's doctor Rachel Moseley. Her research
has explored topics including autistic burnout, suicidality, camouflaging or masking menopause,
and of course the impact that misunderstanding and the lack
of support can have on autistic adults. She has tremendous information.
So before we dive into our episode, we'll be back
with an uninterrupted show right after a word from US sponsors.
Thanks for joining us today.
My absolute treasure.
So tell us since we last spoke, what have you
been up to?
Oh, I've been working on a few different things. So
I have a couple of different projects I'm working on.
I do a lot of work around suicide and self injury,
and so we've done some quite big work here in
the UK trying to identify what autistic people think we
should focus on in order to prevent suicide. But then
I've also been doing a few different things in the
kind of menopause space, and so we've recently published a
book which we hope will help people. So that that's
been really positive as well.
Yes, and it was great to have you on to
talk about both those subjects.
Yes, exactly, so they are my two subjects.
Yes, when we talk about suicide, it's still one of
those subjects that people are uncomfortable bringing up. But the
reality is is something we have to talk about openly
if we want to prevent it. I think it's been
about a year and a half since you were on
to talk about this. Have you seen any meaningful changes.
Are the numbers improving it all or are they staying
pretty assistant as they have been.
It's really hard to tell if rates of suicide changing
in autistic people. It's hard to tell for multiple reasons
because often, certainly in the UK, it takes us a
long time to find out if the death was suicide.
It has to go through that coroner's office, and a
lot of suicides are not actually recognized as suicides and
hence we never get to hear about them. So typically
the reporting on suicide is always a few years later,
and as such we're not aware of any chain in
the rates of autistic people who die by suicide, and
of course many more consider suicide and attempt suicide but
don't die quite awfully. In terms of UK statistics, we
have a statutory process called National Child Mortality Database where
for every child that dies there has to be a
sort of statutory investigation of that of the death, and
so that was really against a little bit behind, but
we recently had a version released which focused on autistic
people autistic children, and suicide was the leading cause of
death in an autistic children. So importantly, to mention again,
you're going to have a case where many deaths are
not registered as suicide, and we will also have the
case when not all autistic children are actually diagnosed as autistic.
So the rates are probably a lot higher.
So what do you think families need to know, and
not just families but communities. What do they need to
know and how can they help so to prevent this
from continuing to happen.
Well, in our most recent research, we really wanted to
ask autistic people themselves what are the factors driving these
high suicide rates and also what needs to change in
order to prevent suicides. So our participants told us that
to a large extent, sides in autistic people are a
societal problem. They are related to stigma, inequality, discrimination, bullying,
and in response, autistic people typically said, we want systemic
societal changes throughout rather than just giving us an app,
you know, a crisis at We want changes in the
education system so they're successible. We want help with employment,
we want greater financial security, we want access to healthcare
and so forth. So they're telling us that really we
need a whole society approach to tackling suicide and autistic people.
One of the issues that I continue to hear is
when someone that does not understand artism, they hear someone
is artistic, and all of a sudden, they think that
that person needs to be fixed, and there is no
fix for this. How do we get this across to
people that this is not a person that needs to
be fixed, this is a system that needs to be fixed.
It's really difficult because I think we're beginning to see
changes in the way the way children are taught about autism.
So we are beginning to see, you know, generational changes
in the way people think about autism. Both hard to
get those messages through to the older generations because you know,
when they grew up, autism was handicapped, it was you know,
the way we talked about autism was very different. It's
really hard to challenge that. But I think it's really
important that in public discourse about autism, the figures who
you know, are authorities whoever responsibility for responsible reporting, they
need to talk about autism very differently, in a humane,
non stigmatizing way.
In your research. Have you seen that people tend to
get missed down diagnosed. Sometimes they'll say they're bipolar, they'll
say they're ADHD anxiety. Really, what it is is there artistic?
Have you seen this happen consistently?
Yes. Indeed, actually the most the most common misdiagnosis we
hear about is personality disorder, especially what's called borderline personality disorder.
We're emotionally unstated personality disorder, and essentially that is often
a diagnosis given to adhd as and autistic people who
show suicidal behaviors or self harm. So basically, if you're
very dysregulated, if you're having suicidal thoughts or self harming,
you're often given that label even if you're actually you're
a divergent.
How do we get around this so that we can
get people to understand that artism is not a disease.
All it is is someone that has a brain that
sees things and perceives things in a different way than
others do. How do we get this across to them
that this is not a problem.
Oh if we had the answer, oh, everything would be changed.
It's super difficult. I think things are improving. We are
seeing new generations of clinicians, mental health professionals who have
a better understanding, and it's really important, as I say,
authority people in places of responsibility and authority. There's a
really terribly, dreadfully harmful rhetoric and it's just so harmful
and it's very, very hard for us to move forward
and progress towards this neuro affirmative perspective when we have
the kind of trumpeting of this kind of cure narrative.
Okay, I think this is interesting. You just brought up
the mental health issue. Then there's an overlap between autism
and mental health.
Some people think of.
ADHD, anxiety or whatever the case may be, yet autism
and those things can overlap several times. What do clinicians
still misunderstand about autism and mental health?
So there's a lot of misunderstandings out there, but I
think a really problematic one is that quite often we
hear clinicians kind of confuse autism mental illness, so they
will think that being anxious or having anxiety or depression
is just a natural part of being autistic, and hence
you don't need to treat it, and that is terribly
terribly What we know from research is that mental illness
and autistic people is complex. There's genetic stuff going on,
but a lot of it is about trauma. And that
tells us that autistic people don't need to have mental illnesses.
We can be mentally healthy autism stick people, and that's
a really hopeful message. But it means that when clinicians
see an autistic person with depression or with anxiety, they
need to treat that. They need to make you know,
autistic people can be free of mental illnesses and we
should be eating for that.
Another thing I think is often misunderstood is autism and
mental health, especially the idea of masking. When autistic people
feel like they have to mask to fit in, sometimes
they can reach that burnout stage. They're trying to mask,
They're doing their best, they're trying so hard, but eventually
it just starts to break down and that can turn
into a long time mental impact. How do we get
people to understand that this is a very important issue.
That we have to look at and we.
Have to keep talking about it, keep talking, keep talking.
And I think that with masking it's really important and
the size that it is a it's not such a
simple issue, as you know. We need to make autistic
people stop masking, or we need to encourage autistic people
to stop asking, because the reality is it's not a
safe world for autistic people to not mask. And so
I think society has to take responsibility for the fact
that autistic people asked because it's not safe in this
society to be openly autistic. So there needs to be
a kind of a realization that it's not The responsibility
isn't with the autistic person. If the world was safe
to be autistic in, then we wouldn't see the masking.
Yeah, that's a great point. Now, one of the more
under recognized people with autism is the females. Most people
when they think about artism, they think about the males.
Because of this, they can have the rougher road to travel.
Lots of times they'll do heavy masking because they're trying
to fit in with the other girls that are more popular. Eventually,
this can create a lot of trauma for them. How
do we get to get them to understand that by
doing all this it really is not healthy and unfortunately
it can lead to a lot of things, including depression,
because they're not fitting in the way they hope that
they would.
How do we help them.
I think a key part is diagnosing diagnosing autistic people
as soon as possible. Really importantly, when you're an autistic person,
whether you're a female or not, you often don't know
you're masking, Especially if you don't know your autistic. You
just know that I can really resonate with this. You
just know that if you behave in a certain way,
you're less likely to be bullied or you're less likely
to be rejected. And so it's really it's really impossible
to know as an adolescent that you know what you're doing.
It's called masking, and it has all these long term
outcomes because right there and then it keeps you safe.
So again it is something we have to challenge the
environment that drives masking behaviors. But if we diagnose autistic
people early on, and we can help them to be
self aware that they are masking, then we can also
start to put in place some kind of countermeasures. So
even if, as I mentioned, you know, we live in
a world where sadly, masking is sometimes necessary for self protection,
but if we know we're autistic and we know we're masking,
we can plan in things like extra self care. We
can learn how to unmask and we can just be
more aware of the cost of it.
I have a gentleman I was talking with he was
diagnosed artistic later in life, and that's another subject I
want to get into. Right after this, he had been
masking pretty much his whole life. Then he was around
this person he felt really comfortable with and he didn't mask.
He just let himself be himself. The person he was
with said, what's wrong with you? You're doing this, you're
doing that. It was at that point he realized that
he had to go back to masking again. He did,
and he turned the whole situation around in a heartbeat.
Everything turned out okay. But that's a tough situation.
I'm such a sad story. And again it's difficult because
it shouldn't be the responsibility of the autistic person to
educate the other person.
Yeah, and if your friends, friends should accept friends for
what they are, not what they think they are.
That's devastating, that's really devastating.
No, like I was talking earlier, he was diagnosed later
in life. Have you done or been around anyone that's
done research on this, How being late diagnosed, how they
accept it, and then of course how it changed their
life from that point on.
So we know that I have done some related research,
and I know of a lot of research in this area.
So we know that autistic people who grow undiagnosed, and
hence who are late diagnosed, they tend to experience a
sort of complex chronic trauma and mental health difficulties, physical
health difficulties, in employment problems, relationship difficulties, and so forth,
education difficulties. They often blame themselves for
these things, or they're labeled by other people as weird
or broken or so forth. So what sometimes happens when
a person gets diagnosed is it's a huge torrent of emotions,
including some really complex ones. There might be grief and
resentment there because you know they've gone through all this
suffering was needless. Why weren't they picked up sooner? What
kind of life could they have? So there's a lot
of complex emotions, but there's also often a lot of relief,
and there's a sense of often a sense of validation
that actually, I'm not a bad person, I'm actually just autistic.
I can give the analogy of one of our menopause
research participants. She talked about how her whole life. She'd
felt like a broken horse, but then when she discovered
she was autistic, she realized she was a beautifully functioning zebra.
Yeah, that's a great story.
I was speaking with a person just the other day
and his dad was diagnosed to artistic at the age
of seventy.
Wow, that just changed his whole perception of life.
Yeah, they started looking back and then everything started to
make perfect sense. So the father and son late diagnosed
and it created a really good connection. That was just
a great positive.
What we hear from people is that realizing their autistic
allows them to be so much more self compassionate. They're
often such fierce critics of themselves, and then understanding that
they're autistic really validates their difficulties and just allows them
to be much more self compassionate.
There's a difference between clinical research and lived experience. As
a researcher, have you seen where research would say one
thing and then lived experience would say the complete opposite.
Have you seen this kind of scenario at all?
This is an interesting question. So the thing that I
think comes to my mind in terms of how, as
you say, research can kind of be telling one's story
and autistic people can be telling another. So historically there's
this idea that autistic people lack empathy marks and lots
of research showing that if you do any a kind
of artificial experimental task or a questionnaire measuring empathy, autistic
people black empathy. But this very much doesn't relate. It
doesn't correlate with autistic people tell us. What they tell
us is that actually, I feel all the emotions in
the room around me. I'm so affected by other people's emotions.
So we actually explored this a little bit in our
own research, and we've found likewise that essentially when people
have stronger and stronger emotional empathy, which means that they
feel the emotions of other people very intensely, whereas their
cognitive empathy, which is like their understanding of other people's
emotional states, might be a bit lower. So we've found
that autistic people, because they have this really strong emotional
response to other people's emotions, it's actually overwhelming for them.
So they have emotional empathy in abundance. They feel everything,
all the emotions of other people, and it really affects
them actually in a harmful way because it's so overwhelming.
So it's a case where Historically, researchers said one thing,
autistic people have said, that's not true, and that's harming us.
And now we are beginning to the research is beginning
to catch up and align with what autistic people are saying.
Well, I think it has something to do with understanding.
Many times, when a researcher is looking at something, it
can be black and white. You see a picture of something,
you see words on a paper, and that's it. There's
just two different perspectives on it. I think that's very interesting.
Another thing you brought up, and that's joy. We often
focus on artistic challenges. What does artistic joy look like?
What strength does that give them that society might just overlook.
Well, my autistic joy is a really neglected research have you.
So we're beginning to have more studies or what's often
known as autistic flourishing and as you say, joy and
the kinds of things that autistic people talk about is
bringing them joy, are engaging in their passions. So what
some people call special interests, I prefer to call passions.
So autistic people describe that as being something that's joyous.
They also describe sensory joy. As you say, we often
talk a lot about sensory distress, but autistic people talk
a lot about joy and sensory experiences as well, and
joy in stemming in competitive movements. So sometimes you hear
these called autistic glimmers, and they're really really important for
well being.
In case we have new listeners, and I hope we do,
the audience might not realize that you are artistic as well.
Correct.
Yes, So when you're doing clinical research, how does this
affect you?
Because you're autistic as well.
You see all the research, the calculations, the numbers that
might just very well say something different like we was
just speaking about, So how does this affect you?
To be honest, I feel very privileged to be in
a position I'm in being able to do research with
the autistic community because the kind of research I'm doing
right now is more where I'm studying topics that historically
haven't really been talked about. People haven't really asked autistic
people now what's really going on with your menopause or
your suicidal experiences. So the research I'm trying to do
is more bringing to like what autistic people are experiencing.
I feel very, very very lucky to as an autistic
person be able to do that.
I know we've made great steps.
Unfortunately, there's a lot of people that still look at
autism as a deficit lens. The data is clear, the
lived experience is clear, The mental health and the understanding
that we're trying to get across is pretty clear.
We're finding that out. So how do we change the.
System Because a lot of people are missing the things
that you're finding out and other researchers are finding out,
and the system isn't changing, or if it is, it's
changing very very slowly. How do we get the system
boosted to catch up with everything that we're talking about.
It's really really difficult and it changes very slow to come.
In the UK, we're doing a lot and everything we
can to engage with policy makers because of course your
everyday personal street. We can all do small things and
we can all behave differently towards autistic people in our
lives and people you know who might be autistic. We
can all be kinder. But to achieve systemic change, we
absolutely need to go after the policy makers so to speak.
We need to demand better for our autistic loved ones.
Yeah, I think that's a very key thing because the
legislators have to know I'm doing a special with a
lot of legislators, and even when they know, it's getting
the other people and the other legislators to know and
vote on it as well to help make that change
and getting everyone on board.
It is really difficult.
It is there's no simple answer, unfortunately, but you're right.
Now we've covered a lot of things. What do you
think that people still need to hear that is very
important about the research you're doing and what you're going
to be doing moving forward.
Very difficult, great question. I just try to think the
blind mote cop pants. I'd say, we know seeing more
and more the inequalities that autistic people face, and they've
always faced. So whereas in the past there's been this
idea that autistic people just naturally have mental illnesses and
we you know, we naturally lead shorter lives and so forth,
we're now really bringing to the fore that it doesn't
have to be this way that we have shorter lives
and have poorer health because of inequalities, and that really
shifts the narrative. It makes it not about you know,
treating the individual or treating autism in the individual. It's
about demanding better lives for autistic people not equal lives.
So that narrative is really changing, and hence it's shifting
the idea that autism and being autistic is pathological. It's
rather saying that the world does not treat autistic people fairly.
So that I think is a positive direction because in
the past, the way people wrote about autism and the
assumptions they made were really really awful.
Yeah, that's a big thing. People tend to make their
assumptions and they know nothing about it sometimes and they
have nothing to back up what they're telling other people.
It's hurtful, I mean very My hope is that with
everything that you're doing, the information you're putting out there,
that people will grab a hole of bit start to understand,
and then truth change can happen.
We have to hope for the future.
I hope so too. I think a part of that,
a really helpful part is hearing from autistic people themselves.
Autistic people are very often othered in society. They are
treated and perceived as other. Whereas if we can listen
to autistic voices because they're there waiting to be high,
we can sort of challenge that idea that autistic people
are other than you. We all share much much more
than we differ.
You mentioned that you have written a book. Tell us
a little about it.
Yes, So I wrote a book with my colleague, professor
Julie Gambeltner, and we wrote a book about autistic menopause.
So it's published by Jessica Kingsley publisher. It's called Autistic Menopause,
A Guide to the Menopause Transition for Autistic People and
those who support them. So it is aimed at autistic
people as well as healthcare professionals or other professionals and
their loved ones. And what we really wanted to do
with this book was we really wanted to demystify the
experience of menopause for autistic people. So we wanted to
talk about, you know what menopause might be like for
an autistic person, now, an autistic menopause, rather than the
standard menopause you might read about. We wanted to give
people stories they could relate to. We interviewed sixteen autistic
people who were going through menopause or had gone through it,
and so their experience is embedded throughout the book. So
we've got all their stories, all their descriptions of you
know what they experienced and also how they coped with it,
their advice for autistic people who are approaching menopause as
well as for doctors. So we really hope it will
help people feel less alone.
Nice. Nice, I love it. Now, how do they find
a book?
So you can get hold of that anywhere on nine
and so it will be on your standard Amazon. I
think anywhere you get books you can find it.
If you would give our listeners the title of your
book once.
Again, Autistic Menopause, A Guide to the menopausal transition for
autistic people and those who support that's awesome.
It's just great that you're doing this work and putting
it out there to help people with that said, this
has been really good, great information, great conversation. I really
appreciate you taking the time to join us today.
Thank you so much for having me.
Oh it's been my pleasure. Thanks again. Thanks for taking
time out of your busy schedule to listen to our
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