Dr. Rachel Moseley: Facing Autism's Unseen Crisis: Suicide in the Autistic Community

Welcome to Why Not Me the World? Podcast hosted by
Tony Mantor, broadcasting from Music City, USA, Nashville, Tennessee. Join
us as our guests tell us their stories. Some will
make you laugh, some will make you cry. Real life
people who will inspire and show that you are not
alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Mantor. Welcome to Why Not Me the World.
Today's subject is going to be a very tough one.
It is said to be the hidden crisis for autistic people.
The subject is suicide. Some of the statistics are staggering
nine times more likely to die from suicide, second leading
cause of death for autistic people. Up to sixty six
percent have considered suicide. That with one percent of the
population means that eleven percent of suicides are those which
are autistic. This is a subject that my guest and
I will be talking about today, Doctor Rachel Moseley. She
is autistic, a researcher. She focuses on mentally ill health
and suicide. So welcome to the show. Rachel.
I think it's amazing work that you're doing and it's
so wonderful that you're raising tension and awareness to this,
so thank you.
Oh it's my pleasure. I really appreciate you taking your
time to come on the podcast and give this information.
So let's kick it off with I understand that you're autistic,
and at what age was you diagnosed?
So I was twenty eight years old, so quite late.
There were signs way back when I was a baby,
and my mother took me to many many specialists throughout
my childhood and teenage years. But back in the nineties
and the two thousand's knowledge about non stereotypical presentations of
autism was really poor. So although this label autism was
mentioned to my mother, the doctor said, you know, I
don't think that's the case. I won't They wouldn't put
me forward for an assessment. So I grew up without
that label, always knowing there was something, just not having
a name for it, really, and then I only found
out when I did my PhD and my mum happened
to mention to me, Oh, people said you might be
autistic when you were a child, and we went through
this process of getting you checked out. Only you know,
they didn't they didn't want to take it ahead. But
I'd never had that. I'd never had that word. I
knew that I'd been taken to all these specialists, but
I've never had that word attached to it. So once
I knew that word, it made a lot of things
make sense, and hence I went for a proper diagnostic
interview and got the label.
So once you were diagnosed and they actually said that
you are autistic, did that allow you to look at
your life, things that you've gone through, and then it
made more sense to you now that you're older.
Absolutely, absolutely, because my childhood and teenage years were very difficult.
And the thing I always think is that even if
you don't have that autistic identity that you know.
About, you're very aware that you're different, and everyone around
you is aware that you're different, and you can't fit in.
You can't do the things that everyone else seems to
do easily. So if no one gives you an explanation
for that, you have to find your own explanation. And
I had various ideas about what was in inverted Comma's
wrong with me? For instance, for a long time, I
thought I might be a psychopath because I knew there
was something terribly bad and wrong about me. And as
I got a bit older and I came to understand
a bit more about what a psychopath is, I kind
of moved away from this idea of thinking I was
a psychopath. But there was this fundamental idea that I
was fundamentally bad, worthless, unlovable, a terrible person, and that
belief just because I had no other explanation for why
I was bullied, why I didn't have any friends, why
I was bad at lots of things, I had to
find my own explanations, and they all tended to be
really negative ones, which means if you're growing up with
these beliefs, you're really on your way to develop quite
serious mental health problems and possibly suicideality.
So you basically found out about your autism because you
was going to college to forget your PhD. Is that correct?
I was learning all about the way autism presents differently
in people of different sexes and genders, and I'd wanted
to go into autism research in the first place because
I felt a great empathy for autistic people, because I
too had felt like I never fitted in and I
got bullied and I couldn't make friends, and so forth.
So I felt this great empathy with people who struggled
with these things. Right, I learned quite a bit about
myself when I when I did this.
Sure, now that you've been diagnosed artistic, you've gone to college,
got your PhD. Has everything that you've learned helped you
not only with others, but help you accept yourself.
Yes.
I just study once where someone had a fantastic analogy.
They said that they'd gone through their life believing that
they were like a broken horse. They couldn't do all
the things that other people could do. Life was really
difficult for them, But now they really they're actually as
zebra Forever you say it, and it freezes you from
all these things that I likewise thought it's my fault
that I got that wrong, and that I deserve to
be treated badly. There it sort of freezes you from
the way of all that self criticism and all these
sort of expectations, Well, I should be all the shoulds.
You know, I should be independent by now, I should
be doing this, I should be doing that. When you
know you're autistic, you know that neurotypical expectations don't necessarily
apply to you. And there's a reason why it's it's
more difficult for you. It's not just that you're stupid
or rubbish or any of the things I believed.
Right right, Well, once you completed your PhD and you
started getting into the doctorate part of it, we're going
to go into something that a lot of people don't
like to talk about, but it's something that needs to
be put out there. And that's one in four diagnosis
are female, even though I've taught with other people that
think that the number is much greater than that. But
it's because females tend to mask it more. They try
to fit in, They look at every single way that
they can to avoid whatever they're trying to avoid, and
then ultimately, because sometimes they can't fit in their mental state,
they get depressed and then they think about suicide. What's
your relationship with that, and how do you approach it?
My personal relationship or my professional will take on it.
I suppose I can maybe talk a bit about both.
If you like, Yeah, yeah, absolutely, I would.
Say that I was personally not a very good camera stag. Fact,
if I had been, maybe I would have had more
friends and I wouldn't have been bullied so much. But
certainly suicidality was throwing up in my life when I
was thirteen onwards ever since really, and I think that
a lot of the autistic people who have missed for diagnosis,
which as you say, very often, these are people who
either identify as female or maybe they on the surface
present as female, maybe have less stereotypical presentations of autism,
so they've picked up and as you say, they may
be very good at learning techniques which allow you to
blend in so that you're not bullied, so that you're
not so you don't stand out. And it's unfortunate in
a way because it protects you at the time. We
know that autistic people camouflage because they're trying to protect
themselves from stigma, from victimization, but it comes at this
terrible cost firstly of being less likely to be identified
as autistic and not given any support. But secondly, we
know research wise that camouflaging is very much associated with burnout.
It's exhausting, and it seems to also really strengthen this
belief that I'm not good enough as I am. I
have to pretend to be someone else because if they
knew the real me, they wouldn't like me. Camouflaging seems
to kind of reinforce these ideas, and many of us
do it and we can't switch it off because it's
safety and it's automatic, but it seems to incur a
real cost in terms of the energy it takes from us,
and hence there is this link between camouflaging and burnout
and suicidality.
I've spoken with a few that have said they think
about suicide almost on a daily basis. They actually set
dates of when they're going to do it, and then
as it gets closer, they'll talk themselves out of it
and then maybe said another date. Have you run across
that at all?
Personally myself, I think to a degree, there's some really
interesting research about suicidal thoughts and what they do to
you mentally, So I think to some extent, thinking about
suicidal thoughts can sometimes help someone to kind of regulate
their emotions. And I think for me, throughout my life
it has sort of been an escape route, as in,
if things get too terrible, if I can't bear it,
then I have that way out. But what we do
know about suicide is that it's very much a fluid,
transitional state. Hence, people can move in and out of
suicidal states quite fluidly. And the more time you spend
thinking about these things, as you say, making plans, the
easier it is to get back to that state on
another occasion. So if you do have someone who, as
you say, they plan it, they plan it all, they
have very concrete, clear plans, it seems that something about
making these plans kind of desensitizes you, and hence, even
if you don't go through with them on that occasion,
it might increase your future thlulicide risk because you're able
to get there easier you've already done that thinking.
I had a friend of mine that tried to commit suicide.
I told that I didn't understand because she had kids
and she had all these people around her that cared,
and she described it to me it didn't matter because
she wasn't thinking about anyone else other than the pain
she was going through. And even though that wasn't physical pain,
it was mental pain, it's still pain just the same.
So how do you help those that are going through
that pain to get past that so they can start
thinking more towards having a better life?
For any difficult I say a couple of things I
can identify with what your friends said, because I think
from personal experience, when you're in that state, it's like
being in a hole and you simply can't see anything.
It's just a wall in front of your eyes. If
that's how it has been to me, how you get
people out of that state, I think is really difficult.
I should preface my answer by saying, I'm not a clinician.
I'm a researcher. I don't treat people and help people
in this state. However, what research tells us is that
connectedness is really important, so helping.
People to feel that they are needed and wanted and valued,
and also being there with them talking to them.
Because people can move in and out of suicidal states
quite quickly, it means that, for instance, there's advice from
major suicide organizations that if you see someone and you
think they might be in that state, talk to them.
Talk to them about anything, talk to them about the weather,
talk to them about mundane things. It's like a precipice,
and they're probably having varying degrees of conflicting feelings about
whether they want to do this, And because these feelings
really fluctuate, it means that if you keep talking to them,
if you're there with them, You're giving them time time
to kind of come back from the precipice, if that
makes sense.
Yes, absolutely, As part of the equation the pressures from
the outside world of the newer typical people who do
not understand what they're going through and they think that
there's expectations of them to be the homemaker or whatever
the situation may be. Does that all add up to
some of these feelings that they may be.
Thinking autistic women, You mean yes, So there's multiple things
going on for autistic women. There's the burden of not
being diagnosed until later on average. Hence you're not getting
that early intervention.
Or okay, that makes sense, You're maybe.
Not getting any kind of accommodations. So school, the school
will be harder for you because school is geared towards
neurotypical learners. So it's going to be harder. You're not
necessarily given any recognition or adaptations, and you are expect
it's function. If you don't have a label, everyone expects
the same of you to fit in. Indeed, and there
are elements of gender roles there which I think do
work out badly for autistic autistic women and female presenting
people because there are these expectations that women are meant
to be worn and nurturing and very feminine, and so
forth and so forth, and so there are these cultural
messages about how you're meant to be and I think
maybe that can create more difficulties for women, especially for instance,
in the workplace, women very often pick up emotional labor,
and if you're an autistic woman, you might really struggle
with those emotional labor roles and you maybe don't get
the slack that an autistic man might not be expected
to pick up those very social roles to the same degree.
What's the answer here, if there is one, How do
we help those that are masking. We can tell that
they're maybe acting a little different than other people, but
because we don't know they're autistic, we can't assume that.
So we'll think, unfortunately, they're just a little weird. But
yet they're just hiding those issues that's going around in
their mind. How can we help them without pushing them,
but still getting them to open up a little bit
to where we can change that dynamic of what they're thinking.
It's really tricky, I mean, in terms of identifying the
signs that an autistic person is struggling, especially if you
don't know they're autistic. That's hard because distress and also
mental illness look different in autistic people. So, for instance,
signs of depression in a non autistic person a neurotypical
person very often you'll see people crying, whereas a key
sign of depression in autistic people it's something called anhedonia.
It's basically a loss of pleasure or interest in everything
around you, including anything you're passionate about. If you are
looking at someone through a neurotypical lens and you're thinking
they don't seem they don't seem good, but they're not crying,
so I don't think they're depressed, this is potentially really problematic.
We know that altruistic people, including women, can there's such
sometimes such good camouflages and they can't turn it off
that they may seem okay on the outside, but they're
absolutely breaking on the inside, and they can actually seem
more still, more quiet, more neurotypical than usual. It's hard
sometimes to gauge the level of crisis by just the
words that someone uses, because they may seem very calm,
very logical. Hence you may not be able to very
accurately gauge suicide risk in someone.
So basically it's it's someone that they have to really
seek the help out so that you can really do
that deep dive and getting towards that road to heal.
Well, there's signs that you can look out for. It's
tricky if we're talking about undiagnosed people, but what we
can say is that signs that have been sort of
highlighted as possible kind of red flags for suicidality and
autistic people are things like if someone is expressing that
they have no reason for living, that they have no
purpose in life, that they feel trapped, that there's no
way out that is hopeless. If they seem to be.
Withdrawing from their typical relationships, maybe their sleep pattern changes,
maybe they engage in risky activities, maybe they seem more
anxious or agitated, or they have dramatic mood changes.
If they seek access to means ending their lives, if
they give away possessions, or they start looking for home
for pets and so forth, these are all really worrying signs.
The really key thing to say is with autistic people
is it's changes in their states that the people around
them need to look out for because autistic people will
typically differ in the way they socially interact, the way
they express their emotions, the way their sleep patterns. These
things are all a bit different from neurotypical people. So
if you judge an autistic person by standards, you might
not pick things up. So you've got to really think
about what's this person like usually, what is their usual
way they display emotions, or their usual sleep patterns, their
usual interests, interactions some of these things, if you see
changes in them, such as emotions and whatnot. It's really
tricky because these things are less reliable red flags in
autistic people since we're so used to judging by neurotypical benchmark.
So it's tricky. But these are a few things that
you can think about in autistic loved ones or anyone
you might be concerned about.
Okay, that certainly makes sense. So we've talked about the
undiagnosed artistic females. What about the diagnosed artistic females. They
sometimes have gone through the same thing with the bullying
and they trying to fit in even though people know
they're autistic. Unfortunately, people can still be unkind and treat
them bad, So how does that affect them? And then
let's go to the undiagnosed female that grows up, becomes
diagnosed and then all of a sudden she has to
relived some of the trauma that she went through in
her teen years. So how does that affect them?
We don't know enough. Unfortunately, there really isn't a lot
of research that actually comparees people who are diagnosed in
childhood versus people who were diagnosed later in life. What
we do know a few things is that as you
play one hundred percent directly people who are diagnosed later
in life, all of those bad thoughts, those bad feelings,
they don't go away. Unfortunately, in the UK, at least,
post diagnostic support is virtually non existent. So you get
your label, then you're on your way, so you don't
you don't get any help unpacking previous trauma, you know,
negative self worth and so forth. So there is some
limited research which suggests that being diagnosed earlier in life
may be related to better outcomes. So people who are
diagnosed early in life may have slightly better chances of
forming a positive self in it. We know that having
a what's called a positive autistic identity so believing you
know this is this is who I am. Then it's
just a difference in my brain. It doesn't mean that
I'm inferior. I'm just different. This is associated with having
better self worth. So if you are diagnosed young, it
seems that you get support and you also more likely
to be helped to grow up in a way where
you have better self worth. So there is some emerging
research to suggest that late diagnosed people do have worse
mental health and higher risk of suicidality. But it's really
complicated because there's, for instance, there's factors like camouflaging. People
who are diagnosed early tend not to be such proficient camouflagers,
hence they are picked up. So it's really hard to
disentangle why is it that late diagnosed people have sometimes
worse mental health. Is it because they're very good at
camouflarging and know that kind of the reapercussoony of that?
Is it because they haven't had any support. Is it
because they will tend to grow up feeling very worthless.
We're not sure. The research is really in such an
early stage righting now.
So unfortunately, the females that get diagnosed later in life
have to fight this battle almost on a daily basis.
Much Yeah, And actually the rates for mental illness and
hospitalization in autistic women outstrip those seni and autistic men.
So we know that autistic women have higher rates of
hospitalization for mental illness, and I believe the statistic is
something like one in four will be hospitalized for mental
illness before the age of twenty five, which is horrific.
They have higher to sign rates, higher rates of physical illness.
There isn't that distinction there between diagnosed women and undiagnosed women,
but just that being female or being signed female at
birth themes to be associated with poor outcomes.
You've given some pretty good advice how to handle some
of these things. For those females that are getting diagnosed
later in life that need to have that inner strength
to survive this daily battle. What kind of advice can
you give to help them hopefully get through this emotion?
Pretty tough, I would say that I think connecting with
community is so important, finding your tribe, and that's really
hard if you don't have a label. So very often
if you don't have a label, you're just weird, and
you can't find a group of people who are weird.
But you can perhaps connect with people who share similar
interests to you, but if you do have that label,
I think connecting with your tribe, the people who are
like you, is really valuable. People who have similar experiences,
people with whom you're not weird or you're not different,
so you're the normal with them.
Sure, it's like creating your own community.
And this is really emerging as important in terms of
autistic suicide risk, that the absence of community, the lack
of belonging, is a really big factor, as well as
kind of traumatic life events, the victimization, the exploitation, all
of these really really negative life events which make it
much more likely that autistic people will develop mental illness,
which then increases their risk of suicide.
I had a guy in his twenties that was diagnosed
when he was like eight. He told me that through
his teen years he was bullied and he felt alone.
And he's a guy. So if you've got a female
this feeling those same feelings of being alone, the social
impact of that must be just really overwhelming.
To that I'd say from personal experience, it's very hard.
And this is what we see in the literature as well.
We are still quite early in understanding why autistic people
are at such high risk of suicide. But it seems
to be very much that autistic people aren't at risk
of suicide because of their autism as.
Such, but because of the experiences they have the way
they're treated.
Because autistic people without learning disabilities have to work and live,
be educated in a world not adapted for them, and
they're highly aware of being different, as you say, and
we now really recognize that if people are a stigmatized
minority group, and they are really pervasively excluded, isolated, and
victimized from a really young age. We know that neurotypical
children like autistic children less. It's just an unconscious bias.
Difference in our verbal and nonverbal behavior mean that neurotypical
people tend to like us slightly.
Less, very sad, So.
It's an unconscious thing. They're not even aware of the bias,
but something in our different behavior is slightly unnerving to them.
So we know therefore that exclusion and bullying of autistic
children and teenagers has been linked to later suicide.
That's a lot of great information. Here's another topic I
think we need to talk about. As females get older,
along comes puberty, that is tough on neurotypical females, let
alone artistic females diagnosed or undiagnosed. So how does that
affect them? Horrible?
Horrible, I think from personal experience, horrible. And there's a
lot going on there. So puberty is a really tricky
time because, as you say, you do have all these
internal hormonal changes going on, but it coincides with your
social world also becoming a lot more complex. So in
the UK we go into secondary school and in the
US you'll have an equivalent. The education system becomes more complicated.
Whereas before you would sit in a classroom and your
teacher comes to you and you stay in the same place.
You then have to move around school and go to
all these different classes, different groups. The social relationships, the
way that other girls relate to each other, becomes more complicated.
It becomes more relational. It's about chatting and sharing confidences,
things that might be hard for an autistic girl. So
there is the hormonal aspect, the puberty aspect, but there's
also all this change in the social world, which means
that it is a bit of a perfect storm. And
as you say, if you're undiagnosed, you don't know why
you're finding it so hot. Hence you might be thinking
it's my fault. I'm just failing, I'm useless. And what's
quite interesting is if you take a kind of lifespan
perspective and you look at someone's whole life, you can
see kind of peaks where mental and physical illness you're
at higher risk. So puberty is one of those points
you can see if you look across the whole population
rates of mental illness like at puberty, so they become
they increase. But if if you look wider across the lifespan,
you actually see something similar at menopause in women and
people with ovaries. So menopause is almost a little bit
like a second puberty because you're experiencing a lot of
hormonal changes again as well as changes in your environment.
And so what we've seen in some research we've done
is that we see a similar thing where people who
have grown up undiagnosed, not fitting in, not understanding why
they can't hold down a relationship or a job, and
having terrible self image. At menopause, we see sometimes that
their difficulties become more extreme. They experience crisis point and
suicidality and that's actually when they're picked up for an
autism diagnosis, because that turmoil of the hormonal changes really
brings their difficulties to the fore, and that's when they
get picked up. So you do see some relationship where
these what we call reproductive transition points where aumones are
going crazy. Everything's very complicated. You see a spike in struggling,
in mental illness, and hence it seems more likely that
someone who was not diagnosed might well be picked up
at these times when they appear to be in crisis.
That is such good information for people that know. That
leads me to my next question. Are there any statistics
on those that mask it so well, seem to get
by just about anything that's thrown at them, and then
later in life they still fighting this. Are there any
statistics on those that actually thrive with everything compared to
those that don't.
We don't know the answer, and this is the really
worrying thing. What we believe is that autistic people as
a whole might be up to nine times more likely
to die by suicide. And there's also very frightening statistic
that maybe remember correctly, up to forty eight percent attempt suicide,
which is terrifying. We don't have that division of diagnosed
or undiagnosed there, but we just know that the suicide
rates are horrifically high and there will be people who
have died without being recognized. Yeah it's awful.
Yeah, that's that's sad. So what could you give for
advice to people that don't understand what autistic people are
going through, Whether they know autism or they don't know autism,
what can we do to help them so that they
can keep moving forward and move on with their life In.
Terms of recognizing suicidality, you mean, yes, or just anything actually,
because if we help them, then hopefully we're helping them
to change their direction. Kindness is at the heart of
it and acceptance of difference. So if you don't know
they're autistic, but maybe they seem a bit quiet, maybe
they seem to have difficulty fitting in, just making space
for them to be who they are are, accepting them
being kind absolutely, And I would say, in terms of
thinking about how to recognize sides of distress, going back
to what I was saying before, if you know the
person well, changes what you should really look out for,
So changes in their normal behavior. They're normal interests, emotions,
interactions routines. It's slightly difficult because autistic people might talk
about suicide in a slightly different way to how non
autistic people talk about it. So some people won't talk
about suicide at all, but some autistic people will say
things that in a neurotypical person would be really alarming,
but is actually very normal for autistic people. So, for instance,
examples I've heard of are people saying, I don't belong
in this world. I don't put into this world. I
wish I could leave here being a place where I belong.
These there's such heartbreaking statements.
They really are heartbreaking statements, for sure.
But they are the reality of many autistic people who
don't feel any sense of social or cultural belonging in
the world. They're heartbreaking. Although they're indicative of a person
who's very unhappy, they're less of a clear red flag
that that person is actively suicidal and thinking about this.
So it is tricky, and I think that I think
that ultimately we desperately need societal change.
That is so true, and hopefully altogether we can make
that change.
An amazing autistic survivor of suicide and also bereaved by
suicide is a person called Lisa Morgan. She said something
once I thought was really profound. She said that anything
in the culture so that autistic people no longer need
to camouflage is suicide prevention.
That is such a great statement.
That aspect of camouflaging, of needing to hide who you
are so that you're not victimized, is so harmful. So
we really need to change the culture so that autistic
people don't need to harm who they are.
I think it's interesting that you use the word culture.
I spoke with an artistic man the other day. His
wife is neurotypical. They look at their differences as different cultures.
Because of that, they have found ways of working around
their differences, and they have two children and everything seems
to be going very well for them.
I think that's really important. I think there's something in
the community right now about reclaiming the word autistic as
an identity, just like the deaf community have done. And
as you say, this is a difference. It's a different
culture that puts on an equal playing field. It's not inferior,
it's not a deficit, but it's a different style of being.
But I think as a society, unfortunately we don't have
society which recognizes that difference rather than deficit model.
I think this is where education and understanding is.
So this is so important when it comes to suicidality
because research has shown us that a really strong factor
in autistic surcidality seems to be feeling like a burden,
feeling worthless, feeling like a liability.
No one should ever have to feel that way.
As societies, we do a really bad job of raising
autistic young people who know they are valued for themselves. Hence,
we really do need cultural societal change so that neurodivergent
learners are they have the same opportunities to succeed at all,
there's jobs suited for them, and so forth.
I absolutely agree. Any last thoughts, We've covered a lot
of ground here and the main topic is about suicide
and prevention of suicide. So hopefully we have found a
way to save some lives.
Well, I think what I'm going to say is I
try to get the message out there and get resources
out there, so tools for incidance for healthcare professionals. Healthcare
professionals very often struggle to recognize signs of crisis. So
I've brought together my favorite resources tools which would also
be relevant for parents, and you can access those on
my website Www. Dot science and Spectrum dot net. Please
read up on those. You can also read accessible versions
of my research there. I think the really important thing
is that as a society we need to change. I
think the reasons for autistics who aside, so many of
them are not within us. They are out there. They're
the way we're treated in the world. There's certainly features
of being autistic which kind of make kind of external
factors affect us more seriously. So, for instance, having kind
of rigid thought processes I call them kind of sticky
thoughts means that if you're bullied, you're likely to ruminate
on it, so it might affect you worse. So there
are internal factors which certainly make us a higher risk,
but so much of it seems to be about how
I treated in the world, whether we're accepted and fit
in and feel that we're worthwhile.
I think that is just an awesome thing to say.
I think you hit everything you needed to say, so
I really truly love what our conversation was, and thanks
for coming on.
Thank you so much for having me.
It's been fantastic It's been my pleasure and what a
great conversation. Thanks so much. Thanks for taking the time
out of your busy schedule to listen to our show today.
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