Rachel Mosley and Eunhee Kim: Unveiling the Intersection of Autism and Menopause – Challenges, Resilience, and Empowering Support Strategies

Welcome to Why Not Me the World? Podcast hosted by
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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.
We are joined by Rachel Moseley and are associate UNIK HIM.
They are here to discuss their findings from studies they've
conducted in the UK on autism and menopause. The goal
is to promote greater awareness and education about this important subject.
So thanks for coming on.
Thank you so much for inviting us on today with
your podcast. We both listen to it and it's amazing.
Thanks so much. I really appreciate that. So, for those
of you that might not know Rachel has been on
my podcast before. It was last September and we went
on to discuss suicide prevention because September suicide Prevention month,
and of course suicide prevention within autistic people. So now
it's really good to have you both on so that
we can talk about another subject that affects females, and
that would be menopause in their later years. So my
first question is to you Uni, are you autistic as
well or are you just a PhD that's trying to
help people.
Yeah, I'm just a phy trying to help people.
I think that's great. So what led you to this
chosen path to get into research for autism and of
course menopause and how they deal with it.
Well, first of all, I initially thought about the philsicality
of autistic people. And while I was researching about this population,
and I found that their health conditions and life transition
really play a crucial role on it. That's how I
contacted Rachel Berth. I actually contacted her directly to talk
more about the topic.
Because she was an expert on this.
She had some great research on this, and she said,
menopaus is one of the many really important factors impacting
autichic people to have mood problems and mental health problems
that might lead them to do with idle thoughts or
behaviors and exting cases. And that's how I got to
look into this topic. More thoroughly, more deeply, and she
was at the mentor watching a project that was best
one menopause and autopic people, and I were very eager
to engage in this topic more in depth. So yeah,
that's how I tried getting best project.
So, Rachel, once UNI had reached out to you and
you got a chance to meet her and talk with her,
what was your response and how did it progress from there?
Well, we were very lucky because myself and my colleague
Julie Gamble Turner, so she's another researcher at Bournemouth University,
we'd done the first research studies on autistic experiences of
menopause a few years ago and we'd always wanted to
do more, but we never had the funding. And around
about the time UNI contacted me, we were having conversations
with a very big menopause organization in the UK called
hen Picked, and hen Picked said, will well fund a
PhD student for you? So we were We were delighted
because it meant that we could extend the research that
we'd already seen started doing on autism and menopause and
carry it much further and answer new questions and bring
someone new into the field and to work with us.
So we were thrilled and it was lovely timing that
you happen to contact me, and then I said, oh,
we've got this opportunity coming up.
Yeah, I think that's great. I also think it's good
to get a younger perspective because this way the data
might be looked at just a little bit differently and
maybe some new ideas can be brought up. Did you
find that by you being younger and going into this
that it helped you?
Yeah? Absolutely, Because since I am younger, which means I
have never experienced menopause, but I will reach there at
some point, and so a Rachel at some point. But
since I am younger, what I first felt was we
don't really know much about menopause, and especially in autistic population,
they might be even more challenged or more limited access
to those resoughts that the helpful information to pay care
and look after themselves, they might help themselves when they
reach to that point or even before bament to take
care of their own health and well being. So as
a younger person, I think it's really crucial for not
only for those in the menopausal age, but younger people
to know about menopause. And people around them, those people
who are experiencing menopause. They might be younger or older,
but they should also know about menopause to effectively help
and support those people, which could holistically impact the whole
help and well being, I mean those people around them
as well. So yeah, I think it's quite important for
younger people to know about menopause as well.
Okay, so Rachel, you've already done some research on this.
So between the research that you've done and the new
research that you're doing, has this opened your eyes in
any ways and given you an insight that you might
not have expected.
Yes, So we've conducted a handful of studies so far.
Three are published right now, and there's a funeral coming
and of course Union's work and what we've found it
has been a huge eye opener. So when my colleague
Julie and I first arted looking and thinking about this,
there were no papers out there on autistic experiences of menopause.
And this was surprising because we know that autistic people
are more likely to struggle with reproductive transitions like puberty,
pregnancy and so forth, and yet nothing so when we
did our studies, I think the extent that people were
struggling at menopause. Many people, many autistic people had They
didn't know much, they didn't know what to expect. Many
people said I thought I was going mad. They used
the same phrase again and again, every single person. And
we had people who I know you were saying about
stories and stories of them powerful. We in our research
were talking to people about their experiences and for stories
we were hearing where people were saying, I lost my job,
I had to become really highly dependent on my aging
and ill parents, I can manage self care. I attempted
to suicide. Men a pause was life threatening for me.
Another thing that we found quite interesting and startling was
that quite a few people discovered they were autistic during
menopause because of course a lot of older women and
people assigned female at birth were not diagnosed as children
because traditionally autism has been poorly recognized in people assigned
female at birth. So they'd grown up and they'd been
just about coping, struggling at coping, and then liverpause hit
and that sort of derailed them.
So what age did you find the most significant changes the.
Unfortunately, we didn't do the kind of study where you
could compare them in terms of their ages, we were
looking I think all of our participants were kind of
between the ages of forty fives.
Well, we couldn't do.
That comparison, but Harry menopause typically begins in the kind
of mid forties. And what we're really hoping to do
in you need study is we are hoping to compare
people in their age.
So, Uni, you're starting your research now, did you touch
upon any of the people that Rachel had worked with
in the past to see how they are coping now
or is this just a complete new study. How are
you handling that currently?
We have asked and whether they were really struggling to
cope during that time or they are struggling to cope
with the incomes and experiences during the kind of menopause
by asking them to complete the coping strategy questionnaire called COPE,
So we are trying to take a rough information about
like whether they are are and whether they are really
struggling at coping with them, and which kinds of coping
strategies they're using to try to effectively cope with them,
including like the denial, acceptance and religion and so on
and so forth like that, and in the future we
are planning to run another quality COMPETA by using interviews
asking more in detail about like how they found their
menopausal states and menipausal transition or how they are currently
finding and which coping strategies that they use and how
effective that was, and if they had any like unexpected
changes during the time that they were trying to or
that they are trying to cope with those experiences related menipouds.
What are some of the strategies that you find that
they've used and have the strategies helped well.
In terms of the study, we have not yet reached
to that point because as a future study as part
of our future study that we are currently planning, but
based on the excesting literature, they we have lots of
different coping strategies be used. For example, in a positive side,
they use acceptance like it is what it is, but
they can try some interventions or other strategies that they
could help them feel better, like physical activity or healthy
diet and stuff like that, like trying to have good
qualities free, although it really depends on individuals and individual conditions.
A lot of relatific people tend to camouflage or math
themselves throughout their life or menopause hits. These can be
like all collapsed or maybe slowly, but for a longer time.
They might really struggle with those things, like those changes
in life and feeling less capable of doing things that
they have been doing so well. So these kind of
things could lead them to have more negative like coping
strategies like denials or maybe self blame. But that's what
this project is really aiming to target, like not not
like directly, but depends we could help them add from
informational pieces of knowledge how to cope with these struggles
during that time.
Okay, So Rachel, you've done some research in the past
on this. So you brought up the point that some
people actually found out during menopause that they were autistic.
So did you have direct conversations with some of these
people or did you find out how they actually found
ways to cope with it, Because now they're actually getting
hit from two sides. One is they're starting to go
through menopause and the other is now they find their
autistic So it seems like one side would be pulling
from the other side. It's almost like I've heard from
those that are ADHD and autistic that they have one
side pulling at them and then they have the other
side pulling at them, and it's a real struggle. So
what did you find.
There's a double wummy.
So what we found in our previous studies was that
it really was a double bummy. Were some people who
had been kin of masking and coping all of their lives,
but they had always struggled and they'd always had very
negative perceptions of themselves. So we had participants who said,
you know, my self image was in a beautiful metapause.
So when you said my self image was as a
kind of broken horse, I thought of myself as a
mentally ill person, all bad things, and menopause struggled so
much that our autism became much more obvious, and she
was diagnosed and it allowed her to really reframe her
self image as a beautiful zebra, not a failed horse.
And so the kind of things you're talking about about
coping strategies, what we found people tended to do and
how they coped in a big way was seeking out information.
So we know that autistic people love to kind of
research things. They often empower themselves by finding out information
about this thing. So about autism about them anopause, and
we also found that what autistic people really wanted to
help from cope at menopause was they wanted access to
other autistic people. So when you're not diagnosed, you cannot
find your community because you don't know what you are.
If you think of yourself as a broken horse. In
the words of our participant, you can't find other people
like you. Whereas when you learn you're autistic, you can
find other online communities, and you can also find people
autistic people who are going through that same life stage
as you now.
Uni brought up coping strategies that she found in her research.
What kind of coping strategies did you find in your research?
I think the two that really stood out were the
finding information and the finding other autistic people. We did
find that some people really struggled to cope, and so.
They were drawing on.
Less adaptive coping strategies like self injury for instance. Some
people were really struggling. But people found that having social
support was really important, and I think it's great if
that can come from other autistic people, but even just
having supportive friends and family was also really important.
How long is this research project going to go on for?
Well, this is a three year project.
Okay, so how does this work? You say a three
year program? So what is year one, year two, year three?
Are you looking to focus on something different each of
the three years that you're doing this?
Well, currently, I finished collecting data for the first study,
so I am at the beginning of analyzing the data.
But hopefully I could run the analysis over a month
of time, and after that I am turning to my
second year, like next week, are as already I can hopefully,
I thought my second project, which is going to be
a interview based study.
Okay, have you found in these studies that you went
into the program thinking that it would be one way,
then all of a sudden you find out that it's
going a completely different direction in the other way.
I want it, doesn't it?
Just make a quick point about what Tony asked previously,
really important thing with unique studies is that they'll kind
of develop from what she finds, So her second study
will kind of take or hoever.
Comes out of the first and kind of bull along
with that.
And the other point I wanted to make about that
is that another really important element of this work is
that we have an autistic advisory help and so what
we would do, for instance, is we'd see what we
find in the first study and will take it to
them and see what they think is really interesting. And
in light of that, I just wanted to answer your
question about kind of something that was unexpected. We had
a really good instance of this where we wanted to
look at a certain thing in this first study and
we took it to our autistic advisory panel.
We said, we're really interested in social support.
Is it valuable that autistic people have someone who they
can go to the cinema with, who they can go
out to dinner with, who they can do X, Y
and Z all these things with. What do you think
this is valuable? And they said, actually, no,
that's not very important for me. That they were saying,
you know, what's important for me. It's not that I
have someone to go to the cinema with or go
out to dinner with, because I can do that by myself.
What's important for.
Me is that I know there is someone that I
can go to when I'm struggling. So we were kind
of going in there thinking, Okay, this thing is the
relevant thing. You know, whether they've got someone they can
go to the cinema with and they told us, actually, no,
that's not what's important. Advisory panel are just really fantastic.
And have all of the ride.
That's really great to hear. So, Rachel, since you've had
both artistic and neurotypical people involved in this study, what's
one of the more interesting or surprising things that you
found on the differences between the way that two cope
with it and how they handle it individually.
That's a great question.
I think it's really tricky because we're at that point
yet where we don't yet know because.
We haven't been able to analyze UNI's data, and there.
Haven't really been studies that have compelled autistic and non
autistic people at manopause, so there isn't really a lot
of direct comparison. There's like one study. I think one
of the things I find is quite interesting, which has
suggested from the data is that autistic people are more
likely to manipause with more mental and physical health conditions,
which what do you think about menopause is that it
can exacerbate mental illness and physical illness. It can worsen
chronic illnesses like EMI and lupus autoimmune conditions.
So if you're going into.
Menopause with more health conditions, which autistic people are statistically
more likely to do. It makes sense that your experience
of menopause might differ. And although we haven't done that
comparison yet, it makes sense that experiences of menopause might
differ between autistic and non autistic people because menopause is
a neurological transition point.
It's not just happening in your ovaries.
It affects the brain in a widespread way, and so
if your brain is different, it makes sense that this
transition point that affects your brain is going to affect
is these slightly different brains in different ways.
Okay Uni, So now you're doing this research and you're
doing the deep dive into it. What are some of
the things that you've found. And it doesn't necessarily have
to be about the research in the project, but something
that you've found about autistic people that you may or
may not have known about that came to your attention
and kind of made you look at things slightly differently.
Just really let me learn that autistic people are quite
vulnerable to this period. And I was so surprised that
I'd never thought about the topic really seriously before menopause
can really make autistic people be more vulnerable. I'm not
really comparing to other groups of people, but like they
can be particularly vulnerable and they can really have fabilitating time.
So what I found here was this project could really
help them to have more appropriate and accurate information about
menopause and about autism and how to cope with this,
how to pass through this period of time. And also
I found that this could be really helpful for people
around apolitic people who might be supporting both people. So
as menopause could they might need more help and more
hand of other people and to help them go through
the with better well being. And this research could be
very helpful for those who are taking care of ale
tiftic people to know better about menopause life and autiftic people.
Okay, is there anything that I've missed, the questions that
I didn't ask that you'd like to address.
It's not really a question, It's just a point because
listeners might be feeling scared, and I don't want anyone
to go away from this feeling frightened. If you're autistic
and you're thinking, oh my god, menopause is going to
be awful. I want to really quickly say that there's
a lot of variation. We found in our research studies
that some people really struggled and some people had a
really easy time. And what's quite important to say in
research like cars, the people who want to participate in
research about menopause are typically the ones who struggled. It's
important to say that because we really don't want to
frighten anyone. We want to make people aware that it's
you know, it's something important to think about and to
make sure that you're empowered with information and you know
your sources of support. But we don't want to scare anyone.
Yeah, exactly. Information is the biggest thing, and that is
what you're trying to bring to them, So that's the
most important thing at this point.
I just want to say that it's not their fault.
However they are feeling or going through mentalpault, it's not
their fault if that's another natural neurological and bodily changes that.
People go through.
So if they are really struggling through it, I really
want them to find them support and help around them,
and I really want to make sure that it's not
going to be in any of the life, but the
new beginning of their life. Yeah, I just want them
to make sure that there's nothing to be devastated by it.
Yeah, yeah, that's good. Now, Rachel, you're artistic and you
found out about it later in life, but you've learned
how to deal with it, and you've adapted to it
throughout your life, and now you're doing research to help them.
So that's a really good strong point right there. So
you grew up with the lens of being artistic, even
though at the time you really didn't know that you
was artistic. So then you get diagnosed, find out that
you are autistic, and now you're living your life as
an artistic woman. Has this opened your eyes to a
different world than even the one that you grew up
that you knew.
Definitely, because I think a bit like the participant I mentioned,
I was previously living as a treatment failure. The ideas
I had of myself were very, very negative because you
can't unlearn things very easily. But certainly, before you know
you're autistic, you are just a failure.
Broken. You have terrible, terrible self perceptions.
And so learning there's a word for what you are
is incredibly It wipes the straight, clean in a way,
it takes a huge burden away. So yes, it is
definitely a different world because I never knew that other
people like me existed and that there was a word
for why we struggle. And in terms of just reflecting
on what Uni was saying as well, I think this research,
I think it opens a lot of people's eyes because
certainly when we started looking at this, some of our
parties have been commented, well, you know, my image.
Of autism was always rain man.
No one thinks of autism as a woman in my life.
So in her forties, with a family, with a partner,
with a job, people didn't think of autistic people as
being in relationships, as being sexual beings or romantic, or
have children. No one thought about autistic people becoming parents.
And so actually what we know now is that autistic
people many. There are many autistic professionals. There's a group
for autistic doctors international, and autistic psychologists and psychotherapists.
So it is the world. Yeah.
Yeah, So that leads me to another question. I would
like you to expand a bit on how being autistic
as you are helps you in what you're doing for
research and how you approach it. In the clinical area
so that you can get the most out of it
that will ultimately benefit as many people as it possibly can.
I would say that being autistic is very useful. We
always want to do research in an extremely respectful and
humane way, and the autistic community has suffered a lot
at the hounds of researchers, most of whom you know.
Statistically they will be non autistic, because there are many
more non autistic than autistic people. So I think the
community feels quite wary of science and researchers, and very
often out of research is also coming this kind of
cure narrative. So I think that being autistic makes it
easier sometimes for me to other autistic people in a
kind of very open, reassuring, respectable way. Though of course
I should say this, non autistic researchers also do this,
and they're also.
Respectful and humane.
But I think that being autistic maybe makes it a
little bit easier for participants to trust me, and in
terms of the burden I was talking about, I think
I can empathize with them a little bit more. Everyone
has their own challenges, so non autistic people will also
have had some of the same experiences that they can
empathize with autistic people about but I think being autistic
gives me quite a fast window into what they might
be what autistic participants might be feeling and thinking.
Right, So the bottom line is that everything that you're
doing is to help people by giving information so that
they have the information that you've come up with in
documents so they can read and understand and further use
to help people. So how is the information that you've
collected so far helped you to better understand what these
autistic people are going through and ultimately give you the
opportunity to come up with some good diagnosis that can
actually help them in the future.
Yeah, So since that's what the online questionnaire online the
State collection, So I can't give what experience about just
my experience interacting with autistic population. But as Rachel said,
I'm so happy to have experience and interacting with these
autistic panel members who were absolutely helpful for improving our questionnaire,
and well, while communicating with them and improving our questionnaire
for collecting data and with them, I found that as
a neurotypical person, I think I could help other neurotypical
people and understand how autistic people think and how their
brain works. I bet not many people would really understand
about menopause and a certain level of detail. So as
a europtical person, I really hope that and I'm still
hoping that this research could help not only authorfic people
to know and learn about menopause in their lives, but
also neurotypical people to learn and about authoric people. Well,
it can be anyone. I mean many of them would
have an authentic people around them. They could have their
children or friends or settlings autistic and understanding them is
quite important for neurotypical people as well in order to
leave all of us altogether. And what has happened because
the engaging with this autific panel members were really important
and very helpful experience to learn how to communicate and
how to really work with these people. And it was
really important for me to learn that authoric people were
very key to see the details and that kind of
thing that really came around altogether to understand and expand
my knowledge and authorfic people in real life.
Yeah, absolutely, because ultimately it's the big unknown. Even neurotypical
people that are going through menopause start to have a
really tough time, So you add autism to that scenario,
and that just compounds it and unfortunately magnifies it to
a different level so that they have to take and
learn different ways that they can cope with it.
Yeah, exactly.
So people really want information, and so the research we've
done so far I think has helped some people to
understand themselves, and I think a UNI's research will answer
many more questions. We really want to understand why people struggle,
because when you understand why the mechanisms, it gives you more.
Of a win. So to think, okay, well, how.
Could we help, Yes, absolutely well. I have to say
this has been a tremendous conversation and I really appreciate
you taking the time to come on.
Thank you very much.
Thank you so so much. We're really grateful for the opportunity.
The pleasure, it's all mine. Thanks for taking the time
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