Gender Differences in Autism

Recent research suggests that autism presents differently in women and girls as opposed to men and boys. Anney and Samantha dig into the research (as well as what the lack of research suggests) and the gender differences in autism.

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Episode Transcript

Speaker 1 (00:05):
Hey, this is Annie and Samantha and welcome to stuff
I've Never told you production of I Heart Radio. Today
we are talking about women and autism. And this one

(00:25):
has been on our list of must new episodes for
for a while. And um, it was a suggestion from
frequent writer and Jamie, so thank you again Jamie. Uh
and uh. Several people have written in and suggested it.
A couple of years ago, back when I did the

(00:45):
video series, The Sminty Video Series, I was the producer Kristen,
she did an episode video episode on on this subject.
So it was the one that was really enlightening for me.
And I'm glad that we're talking about it right. And
according to several research reports, autism and women actually presents

(01:08):
a little differently than in men, and we wanted to
talk about those differences and the many misconceptions of women
on the autism spectrum or a SC, or sometimes Autism
and Spectrum conditions or a s C, so as to
be more inclusive of neurodiversity and to emphasize that people
with autism have strengths and difficulties. Yes, and um, this

(01:30):
is a topic of much discussion among my friends. Actually
very recently, we got to talking about this. There's so
much at play in this conversation when it comes to
the socialization of women and girls and how autism does
present in women, and then when it comes to stigma.
My dad actually refused to have his children tested, uh

(01:53):
for autism, um, even when my mom wanted to do it,
because he was afraid that we would encounter stigma, but
also he was worried it would mess with our self
esteem or something. UM. Right, I know for um what

(02:13):
I've seen today in the field that I was in
in social work with the government in the state, it's
really hard to get a test. Actually, it's really difficult
to actually ask for a specific test on autism because
it's a whole different level and funding as well as
who is specialized in it. And it's very rare to
find someone in the state level, whether it's they take

(02:36):
Medicaid or they don't take Medicaid, or they take whatever
the state insurances that they won't actually do it, it
won't be covered. So it's really difficult to even to
get a test rights UH. And we did want to
put in a disclaimer at the top of this one.
This is a really really complex issue and UH, when
it comes to things like testing and to the research

(02:59):
that isn't there, even the research that is there, and
the language that is used in It's an ongoing conversation,
as is the research. But just to put that out there,
even things super recent was using terminology that uh is
still debated, So I just want to put that out there.

(03:21):
She recognized that, and we were trying to do our best. Um,
but that is an ongoing conversation, right, And just a
reminder that it took the d s M a while
to rearrange how they spoke about it and how they
saw it and seen it as a spectrum and not
just the complete diagnosis, which actually was part of the
confusion on diagnosing people with autism and what the spectrum

(03:44):
actually looks like. We dove really deep, and so some
of them are outdated terms and hopefully we can do
it justice and and do it correctly. So be patient. Uh.
We know that this is a big issue, and again
there are things is that people still don't know about
autism and what that means for individuals, and we just

(04:07):
we want to delve and of course when we're what
we're talking about specifically to women and how it might
show up or how it might be seen or how
it might be diagnosed. So, according to many different reports,
the ratio of men versus women who are diagnosed with
a s D or the autist and spectrum disorder varies
from the two to one ratio meaning two men to
one woman or all the we up to sixteen to one.

(04:31):
So you have numbers all over the place. And every
time I would pick one, every time we would pick
one paper, it would say three to one, two to one,
four to one, five to one. So it was definitely
all over the place. And there are several different theories
as to why more men than women may be diagnosed
as also too if they were being diagnosed correctly. One
of the bigger issues that have been stated is that

(04:51):
the blanket criteria for diagnosis are not equal. In other words,
the main criteria used is typically geared toward men and
and how it reflects on men and used for all people,
which can become problematic with diagnosing and misdiagnosing and in
some cases a refusal to correctly diagnose at all. And
with all that said, um, what is autism spector to disorder?

(05:15):
Are As we mentioned autism spectrum condition According to the
American Psychiatric Association. It is a neurodevelopmental syndrome characterized by
difficulties with social suprosity, social communication, flexibility, and sensory processing.
Man studies to show gender differences for a s d R.
A s C is relatively new um as one resource

(05:35):
states the beginning day of researching this was as of
twenty fifteen, so not that long ago. And one thing
that is clear is that the conclusion is still unclear,
So there you go. Nothing is clear, And one bit
consistent seems to be that there may be a level
of camouflaging for women in social scenarios to hide social discomfort.

(05:56):
So several reports show that women often work to hide
or quote camouflage their stressors and difficulties to fit in.
One study even suggests women are more likely to develop
coping mechanisms to adjust to stress or manage the changes
around them as opposed to men, and some tactics of
camouflage may include not getting too involved in social activities

(06:16):
or escapism, and some reports have stated that the level
of love or intensity of a specific thing or person
could be a part of their coping. And there's also
the question of the level of exhaustion and work in
order for many females who work to adjust to social
norms and the mere stress that can cause, especially for
children and young adults, as one report stated that they
may quote suffer social confusion in silence and isolation in

(06:40):
the classroom or playground, but she may be a different
character at home the mask is removed. Um And is
saying that at home she may be more prone to
releasing her bottled up emotions through meltdowns. Yeah, and that's
a common theme when I was reading personal accounts, is
this idea of masking and camouflaging, right, and how um

(07:06):
sometimes people didn't even realize they were doing that, that
they were mimicking other people's behaviors, and that it's exhausting,
right and that like the word fit and was used
often as we were reading that that it didn't necessarily
mean they knew they were they had autism or they
were on the spectrum, but they knew they were different
and they tried their best. Justifit and and and just

(07:29):
to reiterate, the science looking into autism in women's specifically
is appallingly recent, even if you I think like the
ninety nineties might have been the earliest um and past
research indicated that women couldn't even be on the spectrum,
and that was in scientific papers. That was a conclusion

(07:50):
that people found um And this is another instance in
a long line of research treating men as the norm
and women as a deviation. We've talked about that before,
about like even birth control. A lot of the early
research was on men for something that was being developed
for women. So this is an issue we've seen many,

(08:12):
many times. According to Dr Robin Young, who recently presented
a paper on the possible connection between autism and eating disorders,
only five percent of teachers reported having any issues with
girls on the autism spectrum. Other research suggests that girls
might show more anti feminine traits and may have a
more difficult time developing friendships, since female friendships are more

(08:35):
likely to lean on emotional connections and nuanced communication. However,
there's other research that suggests the exact opposite. Uh and
despite this that autistic women are still generally more able
to have traditional friendships because they have become so adept
at masking. Again, ongoing research, a lot of conflicting stuff

(08:58):
out there. You'll find I find that part of that
is due to age. It seems you see how they
talk about different diagnosis based on age that we'll talk
about that a little bit later too. Yeah. Uh, And
we didn't want to put in here because it's come
up before where there will be sort of this comparison
between fan Girls and the perhaps what some people see

(09:24):
is obsessive over the top, like I can tell you, uh,
how where this person was on this day and when
they learned to do this, and kind of that to me,
it just reminds me of expertise, and we talked about
that in our Fan Girl episode. Um as being a
more main stream way to present symptoms of autism among women,

(09:46):
um as does I've read a whole article about calorie
counting and eating disorders, and that article it was really good,
but it was a specific account of one person, So
I don't know that you can extrapolate that out, but
it's worth looking into. Um and we're gonna we are
going to talk about that the possible relationship between eating
disorders and autism in a second. But in general, it

(10:08):
seems that boys and men's autism manifests more outwardly and
girls and women's more inwardly. So we did want to
talk about misdiagnosis of autism and women. But before we
do that, we're gonna pause for equip break for a
word from our spons there, and we're back. Thank you sponsor. Right, So,

(10:37):
we did want to talk a little bit about misdiagnosing
of autism and women, and many women have talked about
being misdiagnosed with a d h D and anxiety and
even depression. And according to one report, women are likely
to be misdiagnosed as opposed to men who are misdiagnosed
at and it's also reported most of the time they're
only diagnosed if there's an additional intellectual disability or behavioral issues,

(11:01):
but at some point at the fact that because they
are not properly diagnosed as children, that oftentimes the difficulty
in trying to fit in or mask themselves under societal
norms leads to the development of anxiety and deprition, which
is a result of not being able to properly treat
the overall issues of those with a s D or
a s C. So I think that's pretty interesting because

(11:23):
it's not necessarily the actual underlying issue, but it's become
a result of and that says so much as to
the again, the exhaustion and the level of trying to
figure out what is happening um and as in fact,
several parents of young girls have reported that many of
the doctors continue to disregard possible size as being as
we said, this is a little bit different, like the

(11:44):
opposite of what it is being said earlier. Of being feminine.
Traits such as being shire or maybe more passive or
to have excessive interests there far more likely to be ignored,
and if young girls were not following social cues, they're
often being dismissed as just rude or snobbish. And as
an added result, the number of diagnoses vary from young

(12:04):
girls versus women. The ratio differences for diagnosis goes from
five to one young children versus the two or three
to one ratio as adults to the male counterpart, which
again can be attributed to the lack of acknowledging a
specific scigence and diagnosis. Many, many, many people when I
was reading personal accounts, have described that the power and

(12:27):
the almost instant relief of finally getting that diagnosis of autism,
of finally feeling validated and legitimized and heard. Especially, a
lot of people had stories of going to doctors or
even confiding in teachers and being told things like girls
aren't on the autism spectrum, or you're you're bad at

(12:50):
math and therefore there's no way you can be autistic.
Just like these really dismissive behaviors UM and just how
damaging that that is. And if you look at the
isolation often caused by a delay or misdiagnosis UM and
and that exhaustion of trying to mass constantly, and some

(13:12):
people described of feeling like they were failing, like they
constantly were confused and uncertain and that they weren't getting
it right and just exhausted. And if you compound that
with things like race and gender identity, it makes total
sense that when you finally get that the correct diagnosis,

(13:32):
how meaningful and powerful and relieving that is right. And
this could also speak to many of the issues that
happen with kids who are at risk for delinquency, and
issues of delinquency you see a lot of the times
that it's not correctly being addressed. So the kids who
have trouble in school, who may be being diagnosed with
a d h D and incorrectly given medication when maybe

(13:54):
they are on the spectrum, and they're not being taught
properly or in the manner that they can efficiently learned.
So it's a whole big question of yes, is this
a problem, but how big of a problem and what
can it cause? And when you look at the trail
of kids that are getting in trouble with judicial systems
and any of those policies, it's a bigger picture of

(14:16):
how we're again, and I've said this a lot lately,
how we're failing in those types of systems, and misdiagnosis
is one of those huge proponents. And and I say earlier,
I said earlier that there's not enough testing, there's not
enough funding, there's not enough specialists to actually be able
to correctly diagnose our children. This is one of those conversations,
what is happening and how is it breaking down? And Yeah,

(14:39):
I could completely see how finally understanding yourself and what
when it clicks of this is what's been happening in
my in my mind, these are the chemicals that are
are raging through my head. This makes sense and just
kind of the freedom and understanding yourself a little more
when you're properly diagnosed. Yeah, and especially when it comes
to women, and this is a good segue into our

(15:01):
next topic. Actually, I've read many accounts of it being empowering,
where um and I you know, this isn't the experience
of all women you are on the spectrum, But for
a lot of the accounts I read of feeling more
able to be confident in their interactions with people and

(15:23):
say no and not feel like that they have to
go along with something that they didn't want to do,
especially when it comes to dating, right, which is what
we're talking about now. Next, we wanted to touch on
the intersection of women autism, sex and sexuality, and there
are so so much done back here. First, there is
a misconception that autistic women don't have sex or that

(15:45):
they are all a sexual which is not true. Some don't,
but others can and do. People in the autism spectrum
experience the entire range of gender identity and sexuality spectrums. Uh.
And this misconception that autistic women are uninterested in sex
is based in part on some flawed studies that didn't
take into account how autism may present differently in women.

(16:11):
Some research does suggest that the women on the spectrum
are in more romantic relationships than men, they are more
likely to enjoy solitary sexual behavior. Again, there's really not
a lot out there when it comes to this kind
of research, and what is out there is fairly limited

(16:32):
in uh sample size. And also I and I think
about this all the time because you have you always
have to keep in mind who is conducting the study
and why, and maybe if they completely understand, like the
way you phrase questions UM can be limiting and that

(16:52):
I've seen a lot of critiques of these studies in
terms of how they were conducted and how questions were phrased.
So research has found that or suggest that. But another disclaimer,
lots of disclaimers, And I think when we talk about
autism in the A s D and A s C
in general is very limited UM. And we can talk

(17:13):
about that as the way they all actually treat, but
that's a whole different conversation I won't get into. UM.
So another thing playing into this is how many autistic
women have reported an anxiety or confusion around traditional courtship
behaviors like small talk, getting ready for dates and dinners
and reading the signals of dating from someone else, and
difficulties reading signs of attraction. So Autistic women don't uncommonly

(17:36):
report an intense focus on a partner to the point
of pretty much losing yourself as well. Autistic women are
more likely to obsess over people as compared to men
who obsess over objects. Yeah, and this this I relate
to so hard, like that of not understanding social cues

(18:01):
and signals and feeling like I'm constantly missing out. I
know I've said it before on here, that I feel
like there's some level of understanding and communicating that's happening
all around me, and I don't get it, and it
scares me. It feels very unsafe because it's just like
you are constantly guessing um and that there's just like

(18:24):
an expectation that you should get it, and I don't
get it. So I've had to learn to fake it
and I've never gotten tested. Who knows, like why that is.
It could be a lot of different things, but just
in particular that I was ye uh huh. Autistic women
often report a feeling of being unable to meet socially

(18:46):
dictated gender norms like nurturing, and partly because of that,
many accounts I read said they were willing to settle
with anyone quote willing to be with them. Lack of
sexual education is also an issue. In this conversation, some
women described the danger of mimicking a man's flirtation behaviors

(19:07):
back at him and not really realizing that they were
doing that, and then escalating into a situation that they
didn't want to be in. UM for hypersensitive people touching
maybe uncomfortable, while people displaying hypo sensitiveness arousal maybe difficult.
Science is ongoing into the potential connection between autism and

(19:29):
things like sex edition, sexual preoccupation, sexual compulsivity, hyper sexuality,
and the link between excessive masturbation and the desire for repetitiveness,
particularly in that case, and paraphilic behaviors in some cases.
But all of this is yeah, very new, right, and
when it comes to the intersection of sexuality and autism,

(19:51):
there are not many avenues of conversation or resources available,
and again the research is sparse. Previous and so present
studies suggest that perhaps the rate of the LGBTQ plus
individuals is higher among people on the autism spectrum, and
there's a lot of discussion as to why that might be,
if it's if it's even true. Honestly, UM and some

(20:12):
resarch just looking into a link between autism and gender
dysmorphia and nonconformity and the particular set of issues facing
autistic gender nonconforming folks and possible treatments that center them
right and and I just want to put out there
just because there aren't many resources. There are some people
doing amazing blogs and sharing their experiences, and um, I

(20:34):
read a lot of first hand experience of people saying
how comforting that was that that was out there, like
knowing that there were other people going through this when
there is this lack of resources. So just to say
there is there is stuff out there, There is really
good stuff out there. Women on the spectrum are at

(20:55):
a higher risk of abusive relationships. One small sample sized
study found and over the participants who were women on
the spectrum reported sexual abuse in relationships, although it is
worth noting other studies who have arrived at similar findings
have been called into question for not allowing for complex
answers to their questions. Are. In the words of Amy

(21:17):
Gravino at Spectrum news dot org, quote, many autistic women
sometimes consent to what their idea of a sexual encounter is,
but not to what it actually turns out to be
and that again goes back to uh lack of sex education,
among several other things. She goes on to talk about

(21:37):
the intersection of sexual abuse and trauma and autism, under reporting,
not recognized abuse until later, low self esteem, so all
these things getting mixed up in just adding layers of
complexity when we have this conversation and getting a real
grasp of data and what's actually happening. So we do

(21:59):
have of some more issues, but first we have one
more ker brick for a word from our sponsor, m

(22:19):
and we're back, thank you sponsored. We also wanted to
discuss the connection between eating disorders and autism. Some research
suggests that girls and women on the autism spectrum are
more likely to be diagnosed with anorexia or rosa than
boys and men, and on top of that, women and
girls are more likely to have their undiagnosed autism misdiagnosed

(22:42):
as an eating disorder. And according to recent research from
King's College London, depending on the source, anywhere from four
to fifty people diagnosed with anorexia meet the criteria for
an autism spectrum disorder. Yes, and those are that's a
huge gap, huge range. As you can see, um, And

(23:03):
those numbers come from a variety of different papers with
a variety of different survey methods, so that it goes
to show how how varied the research can be around
all of this, right, And there are a couple of
theories as to why this potential connection between autism and
eating disorders might be. Some believe it's genetic, a gene

(23:26):
vulnerability is shared between autism and eating disorders. Others think
that girls with undiagnosed are a late diagnosis of autism
might increase the risk of secondary mental health problems, and
eating disorder would fall under that kind of like what
you were talking about earlier, Samantha. Some resources report that
up to autistic children will also have comorbidity with other

(23:47):
psychiatric disorders. Research is ongoing again again again and until
recently extremely lacking. Also again and the potential leaks between autism,
trauma and PTSD, And again you've gotta wonder what's the
cause and effect, right, mum. Early research suggests autistic men
are likelier than women to develop PTSD, though this could

(24:11):
go back to the camouflaging thing. Women in general are
more likely to develop PTSD. And again, yes, and they
may not be showing it or might not show out
as just regular triggered trauma. Experts also think that things
like extreme bullying and filling overwhelmed and marginalized may contribute
to higher rays of trauma, but also things typical researchers
have overlooked, like loss of routine. Is too early to

(24:34):
differentiary between correlation and causation, but it's good that researchers
are looking into this and of tailored treatment options, which
is absolutely necessary. Autistic women and girls in particular are
more likely to develop anxiety and depression. Some describe the
numbing experience of eating disorders as a coping mechanism when
it comes to undiagnosed or misdiagnosed autism and the exhaustion

(24:57):
of fitting in or camouflaging and or the divi culty
of regulating emotions. So yes, it's really hard for pretty
much everything we're talking about here and pretty much everything
we talked about ever to differentiate causation and correlation. But
so as you as you said earlier about how is

(25:20):
it a coping mechanism that more people have and specifically
women girls have eating disorders or anxiety or depression? Was
it something that came secondary or was it always there? Um? Yeah, yeah,
that's a big question, especially with cold mobility types of

(25:40):
diagnosis in general, and the stress factors that are outside
of the norm, So whether it's environmental or any of that.
And when it comes to the misdiagnosis of autism as
an eating disorder, experts think that that might be because
people on the spectrum might avoid foods that taste a
certain way, or have textures that produce certain sensor reactions,
crave repetitive eating, or count calories obsessively. And I've also

(26:02):
seen that as with clothing to they're talking about specific
to routine. They don't like a specific feeling on their skin,
so they avoid specific things. So yeah, that's the big
question of is it actually and eating disorder or is
this something to do with textual or any of best nature? Yeah. Yeah,
So it seems like education is a is a big

(26:27):
piece of this that we really need to work on
because there is so much more to be done. We
need more research, and we need a more comprehensive, tailored
approach to autism and the intersection that it has with race,
gender identity, sexuality, so much else. This lack of understanding
particularly when it comes to women. Can it has been
so damaging, isolating and lonely been associated with a plethora

(26:50):
of other negative health outcomes, which we've been talking about
that pain of being dismissed or of not being believed,
which we know that in the medical field. We've talked
about that before. Were how women are less likely to
be believed, of being misunderstood, stigmatized, and being robbed of
connecting with the autistic community because of a late diagnosis,

(27:11):
and how powerful that connection can be now healing or
just yeah, legitimizing and validating. That's why this is so
important that we're talking about it, and um, it's so late,
we're having this conversation so late, right, A consume was
kind of early because of the lack of data for us. Yeah,

(27:33):
but like in general, yes, yeah, the fact that it's
taken this long to get anything, uh, any type of
information at all is unfortunate. And and this goes down
to the mere fact of autism in itself that it's
not very known. They're doing research and they're trying to
get all the misconceptions out of the way first and foremost,
which is uh kind of be problematic whether that misinformation

(27:58):
plagues some of the research. But yeah, talking about how
do we diagnose it at an early age, who is
able to who has accessibility to get attested, that's a
bigger question to me. Again, We've talked about this so
many times, and who has access to care? And this
seems to be a luxury, which it shouldn't be because
it definitely neglects so much for our people. How they

(28:22):
could benefit, like you said, from having that diagnosis an
early age, whether it's the treatment, whether it's a community,
whether it's just a plant understanding of how to communicate
with yourself, you know. And it's it's unfortunate that it's
not just accessible, that is only given to those with
the better medical knowledge as well as money. Yeah, yeah,

(28:44):
And and just I think I read the average age
of diagnosis for women is between twenty and thirty, right, um.
And I've just had I've had discussions with people about
how they heard those misconceptions that girls and women aren't
on the spectrum, can't be on the spectrum, and believed

(29:07):
that and so never even considered it. And I was
just hearing the pain in their voices of how hard
they try to camouflage and sound exhausting As a person
who suffers with depression and anxiety, trying to pretend like
I'm okay with that is exhausting. And that's not everyday thing. Yeah,

(29:32):
and imagine it's also it's compounded, I think for women
and girls because there is an increased socialization and conditioning
in terms of being very I don't know about going
is the right word, but being I think there are

(29:52):
a higher level of expectation of being friendly, of making
these connections, of kind of being caretakers of our our
society and our friend group. Yeah, and it just it
seems that there's perhaps that expectation gets all twisted up
and entangled with this and the fact that that's what

(30:15):
you learn as a child to be a lady is
to be these things, so you know that there's a
standard and try and figure out how to live up
to that. It's a whole different level. Yeah, I definitely
think that that complicates this whole thing. Um, And we
would love to hear from any listeners, any resources you
want to shout out that would be magnificent. Uh And

(30:39):
you can send those to our email, our email and
stuff media mom and stuff at ihart mea dot com.
You can find us on Instagram at Stuff I've Never
Told You or on Twitter at mom Stuff Podcast. Thanks
as always to our super producer Andrew Howard, Thank you,
and thanks to you for listening Stuff I've Never Told You.
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(30:59):
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