
Autism in Women Is Misunderstood - edward
http://www.theatlantic.com/health/archive/2015/10/the-invisible-women-with-autism/410806/?utm_source=SFTwitter&amp;single_page=true
======
taurath
The description of hers matches my experience pretty closely as a boy in the
1990s. The feeling that something is deeply wrong with you (logically based in
being bullied in multiple different schools) and that you're terribly
different, and seeing >10 psychiatric professionals and having 20 different
diagnoses can become a life-defining struggle (and this is for the kids with
resources). Its very hard to re-integrate into society, and the comorbidity of
depression and anxiety from pretty logical reasoning can make it harder and
harder to peel the onion to get at the core of the problem.

This girl had supportive parents all the way through, and made it into and
eventually graduated Cambridge, and I'll bet the classes were the easy part.
Too many aren't so lucky.

I'll also be willing to bet that the reseach they've made on women applies to
men as well. This quote in general:

> Particularly interesting is the unpublished observation that in girls with
> autism, the social brain seems to communicate with the prefrontal cortex, a
> brain region that normally engages in reason and planning, and is known to
> burn through energy. It may be that women with autism keep their social
> brain engaged, but mediate it through the prefrontal cortex—in a sense,
> intellectualizing social interactions that would be intuitive for other
> women.

This is exactly it for me. It costs energy to be social, because it really is
just like doing math all day. I know the rules, and have done very well in
high communication jobs, but its draining in a way that isn't for others.

~~~
amelius
For me, doing math or programming actually takes far less energy than
socializing with new people. I wonder what the mechanism is here. Btw, i'm not
autistic.

~~~
taurath
Familliar tasks (including a familiar feeling of uncertainty in
math/programming problems) take less energy than meeting unfamiliar people for
many people, I would presume.

~~~
mettamage
Familiarity is one thing. But I think (not certain though) you can also be
really predisposed to certain activities. I wouldn't be surprised if they
found out that there are certain babies who have subcortical reward structures
only lighting up when they do analytical tasks.

~~~
taurath
We're relatively neurodiverse (as the discussion relating to autism reveals
pretty handily) and its almost certainly true that the differences in our
hardware make certain things easy and possibly some not as easy.

------
dogma1138
Probably not going to be the most popular opinion but...

The article really didn't shown any proof or even suggested anything besides
hinting at various SJ issues. The Autism spectrum at this point is so
overblown that I'm not sure if it's even correct anymore at some point this
looks like it's becoming the new ADHD everyone has it just in a different
flavor.

At this point Autism is almost no longer classified as physical
neurodevelopmental disorder but with a lovely brand new name pervasive
developmental disorder not otherwise specified. Now don't get me wrong I don't
think that low functioning Autism is fake, nor that some actual physical
neurodevelopmental syndromes are but the amount of cases that 2 decades ago
when psychoanalysis was still in fashion that would be classified as neurosis
that are now being classified as autism even tho they do not show any of the
physical signs of autism is quite staggering.

I'm not saying that those people are not "sick" I just have very strong
suspicion that at the end this whole autism spectrum will blow up. It seems
like every week we get a new article about normally functioning adults with
various eccentricities that come out and say that they now know why they
aren't normal and that's because they are autistic.

Articles like this: [http://www.telegraph.co.uk/women/health/why-i-love-
knowing-i...](http://www.telegraph.co.uk/women/health/why-i-love-knowing-i-
have-high-functioning-autism/) just make me question this whole ordeal, 5
hours of diagnosis of a woman in her 40's with a career and a family is enough
to deem some one being autistic without any actual developmental tests, brain
imaging or even in depth psychoanalysis.

I just don't really understand all these cases when people claim that they
don't feel the same way that other people do (there's almost no way to know
what other person is feeling, at best empathy will let you know what state
they are projecting) or what other people find easy or hard. Not everyone
finds socializing easy, not everyone likes to talk about their feelings, not
everyone is even capable of building complex emotional attachments and it
seems like people go in and out of various states like that throughout their
life.

~~~
autismdad
As a father of a 15 year old girl with autism on the lower ability end of the
spectrum I agree with some of what your saying. I feel that the 'spectrum' is
getting so wide that anyone that has any social issues, or has any odd habits
is labeled as autistic now. It's frustrating when I hear people that are fully
functional in society and maybe just have a hard time socializing with people
(probably because they grew up on facebook, etc... and never really interacted
with real people) that say they are autistic. It is like the new ADHD. I spent
the first 11 years of my daughters life changing diapers, usually with her
fighting me the entire time. Wasn't until she was 7 that she ever even called
me dad. 15 now and can barely read Dr. Suess books or answer basic yes or no
questions.

I worry that as more and more fully functioning people are added to the
spectrum that it will result in less help out there for people like my
daughter that really need it.

~~~
ScottBurson
> I worry that as more and more fully functioning people are added to the
> spectrum that it will result in less help out there for people like my
> daughter that really need it.

Do you actually see this happening?

It seems to me just as likely that greater awareness of the entire spectrum
will bring more acceptance and more resources.

Anyway, for my wife, learning that she has Asperger syndrome has been a great
relief. It's hard for me to see that as a bad thing. Your story is heart-
wrenching, and I hope your daughter gets the help she needs. I just don't see
why my wife's experience and yours need to be in conflict.

~~~
autismdad
I've noticed a huge shift in peoples opinions towards autism since I've had my
daughter and I do think it will affect the overall help available to people
with autism. The more you add higher functioning people to the spectrum, the
more people don't see it as a debilitating mental illness.

Whenever I mention to someone these days that my daughter has autism, they
don't really get what that means. They say things like "oh, is she really good
at math" or "my coworker has autism too". And I'm thinking no she doesn't
really understand even the most basic math, she'll likely not ever be able to
have a real job, and who's going to take care of her when I'm gone because she
needs help all day every day just to get through the day.

I strongly believe there needs to be a clear distinction between higher
functioning people on the spectrum and the people that are really struggling
with the most basic aspects of life.

Anyway, I get that people have different opinions, that's just mine. :)

------
astral303
The quality of psychiatric care, in general, is abysmal. There's a ton of
poorly-competent therapists.

SO when someone has autism or ADD or depression or these other disorders that
make it really difficult to reach out to get help, and then that one person
does reach out and gets shit for help, well, then how do you not give up?

The behavior health system is stacked against the most vulnerable.

And nobody cares enough. All those doctors that dismissed this woman again and
again need to be publicly taken to task for their lack of professionalism and
lack of giving a shit (which IMO goes right against the Hippocratic Oath).

~~~
isatis
It is definitely a general problem, and from personal experience I've gone
through so many therapists this year it's not even funny. I've even had a
therapist put me down, and for awhile I was wondering whether to off myself
because I couldn't get good help.

Whether I'm in the DC area and looking or in the Bay Area and looking, and I
feel like giving up on a search most days because nobody knows how to properly
treat those of us who are on the autism spectrum.

------
andreasvc
For an article addressing the issue of autism in women being misunderstood, I
would have hoped to find a clear description of the actual difference with
male autism. Instead we get a few human interest case studies and scientists
working on this. The article simply doesn't seem to go to the heart of the
matter.

~~~
antod
That was the point of the article. Wouldn't you only get a clear description
and be able get to the heart of the matter if it wasn't misunderstood?

Were you expecting hard data in a magazine article?

I personally thought the 'human interest studies' were very informative, and
gave me plenty of context when thinking about differences between male and
female people I know (not getting any more specific than that).

~~~
andreasvc
No not necessarily. If the headline claims something is misunderstood, you set
up the expectation that you'll set the record straight. Misunderstood implies
that there is some correct point of view, otherwise you'd call it a mystery.

I didn't expect hard data, but a list of traits specific to female autism
would have been useful.

------
rdudek
As a father of a girl (3 years old) who has been recently diagnosed with
autism, I found this article interesting. She is currently receiving speech
and occupational therapies. This article gives us a glimpse of future
challenges she'll face. Hopefully we can get her prepared somehow.

~~~
nyc111
I've been reading more and more about the relation of autism with the
microbiome, as mentioned in this article

[http://articles.mercola.com/sites/articles/archive/2012/05/0...](http://articles.mercola.com/sites/articles/archive/2012/05/03/probiotics-
impact-brain-performance.aspx)

"Here we describe an association between high levels of intestinal,
mucoepithelial-associated Sutterella species and GI disturbances in children
with autism. These findings elevate this little-recognized bacterium to the
forefront by demonstrating that Sutterella is a major component of the
microbiota in over half of children with autism and gastrointestinal
dysfunction (AUT-GI) and is absent in children with only gastrointestinal
dysfunction (Control-GI) evaluated in this study."

Have you looked into this? It may help your daughter.

------
usmeteora
More in response to the comments so far than the article itself. In general, I
think these comments too much reflect or defend against the idea that
"autistic women have it worse than autistic men" and people are debating this
when really the message is "The scientific community does not have an official
lsit of symptoms for autistic women versus autistic men" This is important
because noone knows what causes autism so diagnosis based on symptoms is the
only way, and we are figuring out right now just how different these symptoms
are, and how uneducated the medical community is at even thinking to get a
girl diagnosed for autism.

40 years ago the medical community, even the guy who coined autism himself,
didn't even beleive it was possible for women to have autism at all (even the
most extreme obvious cases) we are in close to that same position for high
functioning women with Asbergers. Just take the fact that the average age of
diagnosis for women is about ten years later in life than males, mostly
because the symptoms accumulated over the past 40 years were only accumulated
based on men. So women, just to get diagnosed (forget crying a life of "oh we
have it so much harder as being autistic) just to get a diagnosis you have to
stumble into a series of misdiagnosis and oddities and lack of documentation
about how these symptoms (again we don't know the source) present themselves
in women. BY then, women are just as much as men, if not more by a delayed
diagnosis frustrated by everything theve been through and all the things that
are "wrong" with them that their families can't figure out.

The struggles autistic men and women face are not to be argued whether its
worse for one gender or the other, but based on the whole point above, that
they are DIFFERENT, and we are less educated about one set of symptoms than
the other. It's not about giving one gender a "I've got it harder than you"
sympathy card.

1\. In 2013 Asbergers was classified as being on the Autism scale.

2\. Alot of high functioning Asbergers are technically autistic now that were
medically/officially not autistic 5 years ago, but these people are no
different than they were 5 years ago, its that the medical community
rearranged a big group of typically high functioning people and put them on
the autism scale. I happen to be one of these, and was diagnosed (as Maya was
in this article) with OCD at 8, and anxiety, and basically an accumulation of
common symptoms of autism until I went to an Engineering school where so many
people were on the scale a Professor made us all take the test and that is
when I found out about all of this.

3\. Speaking of that, You can be tested for this and registered on a scale. As
we do not know what causes autism, we can only diagnosis based on symptoms,
like a lot of things, so the conjecture about "not knowing for sure" on this
thread is valid, but so is it for alot of other diseases and cancers that we
don't know the cause of, so that does not invalidate the seriousness of the
impact the non sourced symptoms have on the lives of people.

4\. Being an Aspie and a book nerd (my mom first took me to get me tested to
see what was "wrong" with me when I spent the entire summer of my 8th year and
read all 138 Mandy (kids mystery novel) books in 7 weeks and didn't care to do
anything else).

I have since being diagnosed, read 17 books on females with Asbgergers and
about 15-20 books about Autism in general, and I think the comments about
females with Autism on this Atlantic comment thread and the HN thread so far
are way off. That being said...

5\. I DO NOT like this article because it is almost entirely anecdotal and
focuses on Maya's extreme cases while for me, and alot of other female aspies
I know (sources of female aspies below) it went more like all the things that
make you cute and "quiet" growing up, you do not grow out of.

I would pausit (and youll see some horribly negative and ignorant comments on
the actual commentary of the article's page on the Atlantic) that alot of the
anger coming from the responses is trying to put girls on this special "i have
it worse than you" stage but its not about that. It's that we have it hard in
DIFFERENT Ways.

Girls are EXPECTED to be socially smooth, incredibly bubbly and cute and
outgoing. Girls to have careers that are more socially oriented. We are
expected to be flirtacious. We are expected to be stylish. Any deviation from
this norm results in a horror movie of emotional bullying especially from NT
girls starting in middle school, who feel threatened by you and think you are
some kind of monster, and the bullying does continue, just in more nuanced
pretensed ways as women "mature" and learn how to be "fake" nice, whereas
typically we are considered to be continually naive and childish, and too
innocent because we are bad at interpreting other peoples emotions, and more
importantly, their motivations, which actually makes female aspies more
vulnerable to being taken advantage of in any situation, but particularly
sexual ones, and this aspect is only exxagerated by the fact that overall
physically and emotionally aspie women tend to mature more slowly, and most
don't start their periods until 19-20ish.

I would say from there it's not that our genetic inheritance or whatever the
cause is, that our physical lot of autism is "worse" its that our
personalities, career choices and lack of friends when women are expected to
have friends where its generally accepted that alot of guys are introverts, is
that we are just put in situations where we stand out like a sore thumb more
and more, whether it be being the only girl of 5 in my Engineering Department
and automatically standing out, in the male dominated career or the fact that
when a guy tries to hit on me at a bar I may look normal but the nuances of
these more subtle interactions I fail miserably at.

I've lost a couple guys interested in me because I literally could not flirt
and do this properly.

It means for me I have NO idea how to flirt, how to make any eye contact or in
an effort to make any eeye contact giving an acidental death glare.

To say it's degrading for your self esteem is an understatement...

Being socially awkward,

5.5 So as far as the people on here making comments and posting articles about
how the more they see high functioning women/successful CEOs being autistic
the less they believe it, BELIEVE IT! Because on the high functioning scale,
we are masterminds and extremely laser focused and dedicated, but also
sympathize with them how hard it is emotionally as well because it goes
against the grain of everything people expect from women. Not to mention,
women whove managed to surpass all these social abnormalities and become
successful have learned more than ANYONE just how much success is based on
political favour and shmoozing people, not because they are good at it or even
succumbbed to it, because they KNOW how hard it has been not having those
characteristics come naturally have had to put in the effort in one way or
another to overcome inadequacies other people cannot even comprehend, and have
probably faced alot of judgment as they have stumbled their way along.
Certainly for me this is the case.

6\. reddit.com/r/aspergirls is a more realistic perspective of what high
functioning "autism" specifically Asbergers is likem since it is a community
of women who have asbergers or are atlast trying to learn more about it by
sharing about their symptoms etc.

~~~
someone7x
As the father of an autism-spectrum daughter, I find your insights very
enlightening.

~~~
usmeteora
Depending on how young your daughter is, especially if she is still a child or
preteen, I strongly recommend searching "female asbergers books" on Amazon and
reviewing ratings for yourselves but there are alot of books for parents about
aspie girls, what to expect, how to empower them, and most importantly, how to
keep them safe.

Female aspies are empaths actually, which is counter intuitive to people not
familiar with all of this, which makes them huge targets not just for casual
bullying and being outcasted by girly girls, but for more sinister reasons as
well. Even being older, empaths are the perfect codependent counter type for
narcissists and other wise sociopaths and psychopaths. They have affective
empathy (empty shallow charming ability to pretend to have emptathy) but crave
raw empathy which is what aspie girls have an abundance of (google intense
world theory, applies to both male and females for autism). This coupled with
(I edited in my original comment in more detail) a females aspies or any
autistic females tendency to be just incredibly naive about peoples emotions
and their intentions, is a disaster waiting to happen.

Going to school in a male dominated environment with an unusual number of anti
social personalities (introverts --> engineering...) I was the perfect target
so sociopathic men and there were alot of them around me. It's not surprising
in RETROSPECT that a year ago I got out of a long term relationship with a
verifiable sociopath for all the reasons I just said.

After educating myself about all of this I wish I had read some of these aspie
books for young females when I was younger and I could have protected myself
from a lot of toxic situations.

Now, I volunteer in aspie programs teaching young girls how to code. Alot of
aspie women can't keep good jobs because they are "rude and bossy" or not
charming enough or "creepy and quiet". Luckily for me my skill set is in high
need and objectively evaluated for the most part (can't argue with me if I
produce your code on time) so I thought it would be incredibly empowering to
build girls with this confidence and self esteem, and potentially the ability
to arm themselves with solid careers/technical skillsets that overpower an HR
departments ability for a 26 yr old girl wearing designer clothes and paid to
be charming to evaluate a nerdy antisocial girl on her "overall performance"
if actually she is an objectively solid and valued individual contributer and
has code to show it.

If she is young I would recommend fostering her hobbies as much as possible
and encouraging "structured playtime" for whatever her interests are. With
channeling and encouragement (for all the people who post successful autistic
women as a reason to doubt they have it at all) aspies including aspie girls
can become MASTERS at the things they are obsessed with.

Turns out, successful people are typically successfully because they love what
they do, they have infectious passion and they are GOOD at it, and can spend
hours uninterupted developing their product or building their empire, so
actually aspie women are the perfect character trait combination then for
successful people, if they can have emotional support through their
difficulties with social interactions while being encouraged to do what other
people call "active but odd obsessions" because that could be the talent that
makes or inspires her career one day, or maybe even her company that she
starts.

~~~
bootload
@usmeteora great comments here.

 _" I was the perfect target so sociopathic men and there were alot of them
around me. It's not surprising in RETROSPECT that a year ago I got out of a
long term relationship with a verifiable sociopath for all the reasons I just
said."_

Read _" Dangerous Personalities"_, Navarro.J. [0],[1]

Navarro details a forensic checklist to identify personalities like this. I've
got this book and it gives you a numerical score to ID said personalities,
along personality types you've listed, and a few more.

Forewarned is forearmed.

[0]
[http://www.jnforensics.com/#!books/cnec](http://www.jnforensics.com/#!books/cnec)

[1] [http://www.amazon.com/Dangerous-Personalities-Profiler-
Ident...](http://www.amazon.com/Dangerous-Personalities-Profiler-Identify-
Yourself/dp/1623361923/)

~~~
usmeteora
This is so funny, but I actually just finished that book 2 days ago. Along
with about 10 other books over the past few months about antisocial
personality disorders and Autism, Asbergers, Females with Asbergers. My way of
grieving through it was to read and learn everything I could about myself and
my ex.

Thank you!

I'm also reading/have finished reading in the past few months: The Empathy
Trap Safe People Without A Conscience Trauma and Memory Women Who Love
Psychopaths Social Engineering Whos Pulling your strings In Sheeps Clothing

From your recommendation which is the first one I heard of, I found these
highly reviewed books on Amazon in the recommended section after you search
that book.

~~~
bootload
_" This is so funny, but I actually just finished that book 2 days ago."_

Did you find out any diagnosis or observations you didn't recognise?

I suggest you also read WEBIS and work at reading body language.[0] WEBIS is
an API of human body language.

I read an interview on the book, DP, before I purchased it a year ago and
Mr.Navarro made a comment in the interview that it was hard to write. I
actually asked him why? His answer wasn't that revealing. I was just curious.
After reading the book, [1],[2] I now know why.

If you have any specific questions, ask Mr.Navarro at
[http://twitter.com/navarrotells](http://twitter.com/navarrotells)

[0] Read, _" What EverBody Is Saying"_ WEBIS for specific examples of body
language. Got this one as well.

[1] Cf: Time spent at Brigham Young University. (Read the book).

[2] [http://money.cnn.com/2015/10/27/news/economy/joe-navarro-
cub...](http://money.cnn.com/2015/10/27/news/economy/joe-navarro-cuban-
refugee-fbi/)

------
fecak
As the parent of an 11 year old daughter with autism, I've found in past
autism-related posts that many are unaware of warning signs. Early detection
is key to better outcomes.

[https://www.autismspeaks.org/what-autism/learn-
signs](https://www.autismspeaks.org/what-autism/learn-signs)

------
danharaj
There was a time when heart attack symptoms in women were misunderstood, too.
It seems to be a recurring pattern in medicine.

~~~
sandebert
Still is. In my friends case it was misinterpreted as toothache.

~~~
dogma1138
Not really misunderstood but misdiagnosed as the symptoms are often quite
different including the major symptom - acute chest pain which almost 2/3rd of
women who have went through a cardiac event do not experience, that percentage
is even higher in women that went through vaginal labor.

It seems that the best tool doctors have is where does it hurt > my chest >
heart attack. Women just do not seem to have the same pain sensation not in
scale nor location as men when it comes to heart attacks which it makes it
very hard to diagnose. Most female heart attack cases do not get reported
simply because allot of them do not feel any significant pain and those that
do often feel it in other parts of their body. Add to that the fact that allot
of heart attack likelihood increases with age which coincides with menopause
which on it's own introduces lightheadedness, shortness of breath, sharp pains
and other similar symptoms to cardiac distress and you get a diagnostic
nightmare.

There are other conditions which are more rarely go under diagnosed in men
such as bladder cancer, breast cancer (cancer on it's own is more prevalent in
men and women often are diagnosed earlier, and have much higher survival rates
some times upwards of 50% difference), eating disorders and many various other
things.

------
andreasvc
> It’s the long list of diagnoses Maya collected before she was 21, from
> borderline personality disorder to agoraphobia to obsessive-compulsive
> disorder, that begin to hint at how little we understand autism in women.

That doesn't follow. It could simply mean that she had really bad
psychiatrists who just threw around diagnoses. Maybe it reflects that mental
illness in general is poorly understood, because they didn't discover that the
other diagnoses were false positives. I am afraid that unless a diagnosis is
followed by a successful treatment, it's not worth much.

~~~
dragonwriter
You seem to have mistaken "begin to hint at" in the article for something like
"proves" or "necessarily, logically implies".

~~~
andreasvc
No I haven't. I just found it very odd that that was the conclusion drawn from
this (even if it's only called a hint), while not saying _anything_ about how
bad those psychiatrists were.

------
VLM
Here's an interesting observation

The response by doctors and the general public is about the same for:

People who can't be diagnosed with Celliac without extreme measures

Women who can't be diagnosed with a heart attack without extreme measures

Women who can't be diagnosed with autism without extreme measures.

There can't be much if anything in common between my son's stomach lining, a
young womans brain tissue, and an old woman's heart muscle. Oddly enough what
they both have in common is the same medical-industrial complex. On a very
small scale you can fix one person at a time, with a heart bypass or whatever
else, I can't disagree with that. The insight is whatever fixes the "big
system wide problem" given the commonality of symptoms it obviously can't be
biologic in origin. The problem is inherent in the medical system itself, what
it means to be a medical system at all, what it means to be healthy or normal.
I think this is missed by people hyperfocusing on one narrow issue, well, all
we need is "the official autism test" and it'll all be fixed. Or we need to
sell Chinese made pink bracelets to "increase awareness of female heart
disease", thats all a waste of time compared to looking at the greater issue
(of which I currently have no answer, but I'm also uninterested in wasting my
time on half efforts)

