15 ms·

Autism in Women Is Misunderstood

82 points by edward 11y ago

danharaj 11y ago
There was a time when heart attack symptoms in women were misunderstood, too. It seems to be a recurring pattern in medicine.
- sandebert 11y ago
  Still is. In my friends case it was misinterpreted as toothache.
  - dogma1138 11y ago
    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.
taurath 11y ago
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 11y ago
  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 11y ago
    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 11y ago
      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 11y ago
        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.
  - SCAQTony 11y ago
    >>I wonder what the mechanism is here.<< Possibly introversion which is NOT a disorder. Perhaps you just enjoy personal time and feel at peace. Psychology today: https://www.psychologytoday.com/blog/fulfillment-any-age/201108/there-s-more-introversion-you-might-think https://www.psychologytoday.com/blog/fulfillment-any-age/201...
  - mettamage 11y ago
    I was also thinking about introversion as another explanation, but introversion isn't about less energy while socializing. It's about less energy because there is too much going on (too much external stimuli).
rdudek 11y ago
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 11y ago
  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/2012/05/03/probiotics-impact-brain-performance.aspx http://articles.mercola.com/sites/articles/archive/2012/05/0... "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.
dogma1138 11y ago
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-have-high-functioning-autism/ http://www.telegraph.co.uk/women/health/why-i-love-knowing-i... 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.
- rdudek 11y ago
  Autism is a spectrum, not a single type disorder. Problem with this label is that it has 100+ different things lumped into one category. Not all autistic folks are the same, it really depends on where they land on the spectrum. Also, the word spectrum is not real good word to use, should be more like a cloud instead of a straight line since different autistic people exhibit different problems. Also, more kids are labeled as autistic so they can get the extra help they need as early as possible to improve their life in the future. Insurance companies won't cover costs of therapy unless there is a medical condition that requires it.
astral303 11y ago
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).
- comrh 11y ago
  This is so true. It isn't just access, it's that what you get is usually bad. My experience is if you're stuck using insurance usually you can give up hope of finding someone under 50 who actually gives a crap.
- isatis 11y ago
  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.
usmeteora 11y ago
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.
andreasvc 11y ago
> 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 11y ago
  You seem to have mistaken "begin to hint at" in the article for something like "proves" or "necessarily, logically implies".
  - andreasvc 11y ago
    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.
- taurath 11y ago
  Its because a person may fit all the clinical requirements of a given diagnosis at one point, but may not at another. Getting to the root of a problem can be very difficult - even getting a basic response out of someone who is in a state of major depression or panic-attack inducing anxiety is difficult. You have to find ways to peel the onion. However, when the root cause isn't found and addressed, the treatment for the comorbid conditions can actually mask and obfuscate the underlying ones.
andreasvc 11y ago
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 11y ago
  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 11y ago
    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.
VLM 11y ago
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)
fecak 11y ago
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

82 points by edward 11y ago

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

sandebert 11y ago
Still is. In my friends case it was misinterpreted as toothache.
- dogma1138 11y ago
  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.

taurath 11y ago

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 11y ago
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 11y ago
  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 11y ago
    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 11y ago
      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.
- SCAQTony 11y ago
  >>I wonder what the mechanism is here.<< Possibly introversion which is NOT a disorder. Perhaps you just enjoy personal time and feel at peace. Psychology today: https://www.psychologytoday.com/blog/fulfillment-any-age/201108/there-s-more-introversion-you-might-think https://www.psychologytoday.com/blog/fulfillment-any-age/201...
- mettamage 11y ago
  I was also thinking about introversion as another explanation, but introversion isn't about less energy while socializing. It's about less energy because there is too much going on (too much external stimuli).

rdudek 11y ago

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 11y ago
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/2012/05/03/probiotics-impact-brain-performance.aspx http://articles.mercola.com/sites/articles/archive/2012/05/0... "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.

dogma1138 11y ago

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-have-high-functioning-autism/ http://www.telegraph.co.uk/women/health/why-i-love-knowing-i... 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.

rdudek 11y ago
Autism is a spectrum, not a single type disorder. Problem with this label is that it has 100+ different things lumped into one category. Not all autistic folks are the same, it really depends on where they land on the spectrum. Also, the word spectrum is not real good word to use, should be more like a cloud instead of a straight line since different autistic people exhibit different problems. Also, more kids are labeled as autistic so they can get the extra help they need as early as possible to improve their life in the future. Insurance companies won't cover costs of therapy unless there is a medical condition that requires it.

astral303 11y ago

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).

comrh 11y ago
This is so true. It isn't just access, it's that what you get is usually bad. My experience is if you're stuck using insurance usually you can give up hope of finding someone under 50 who actually gives a crap.
isatis 11y ago
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.

usmeteora 11y ago

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.

andreasvc 11y ago

> 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 11y ago
You seem to have mistaken "begin to hint at" in the article for something like "proves" or "necessarily, logically implies".
- andreasvc 11y ago
  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.
taurath 11y ago
Its because a person may fit all the clinical requirements of a given diagnosis at one point, but may not at another. Getting to the root of a problem can be very difficult - even getting a basic response out of someone who is in a state of major depression or panic-attack inducing anxiety is difficult. You have to find ways to peel the onion. However, when the root cause isn't found and addressed, the treatment for the comorbid conditions can actually mask and obfuscate the underlying ones.

andreasvc 11y ago

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 11y ago
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 11y ago
  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.

VLM 11y ago

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)

fecak 11y ago

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