Yes – Asperger’s may present differently in women – but…

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I’m still not sure what to make of this notion (now being presented to us as an absolute fact), that women with Autism/Asperger’s Syndrome are being diagnosed less frequently, due to their apparently inherent ability to ‘mask’ their symptoms by ‘mimicking’ those around them.

There are just too many assumptions hidden within this concept that have not been deeply analyzed enough for my liking.

It almost seems like once again, we as women, are being told to turn a blind eye to any and all personal experiences that do not match up succinctly to the now, almost biblical accounts being written by psychologists, as to how women with Autism should present.

Accounts that not only seek to define our presentation, but come complete with a rationale as to why our supposedly ‘hard to spot’ tendencies have, for so long been so tricky, that it’s entirely understandable, and therefore forgivable, that we’ve been over-looked by the very profession that has at last finally deemed us worthy of recognition.

Call me a cynic, but I can’t help but feel that there’s something a little too psychologically tidy and self-serving lurking somewhere beneath the surface of all this.

Yes, Asperger’s may present differently in women, but just how differently and why those differences occur, are issues that I believe should still be up for debate.

As it stands at the moment, there are women in their 60’s who are now finally being diagnosed with Autism after living through decades of feeling disconnected and different, rejected and misunderstood by their families and enduring years of being misdiagnosed by professionals.

So how can it be that the same professionals, who have clearly recognized the level of difference, disconnect and/or difficulties with sociability that these women experienced, at least enough to have diagnosed them with depression, bipolar or personality disorders, now suddenly see fit to turn around and make the bold claim that Women with Autism ‘mask’ their symptoms?

If these women were ‘masking’ their difficulties/symptoms so well, then how come they were misdiagnosed with any psychological conditions at all?

The only evidence of ‘masking’ to found within these revelations, comes not from the women, but from the psychologists who were unable to accurately diagnose them due to their own erroneous belief, that women could not experience Autism.

Which of course is how psychologists, via their own actions in refusing to view such women’s behaviors as evidence of Autism, turned the notion that women do not experience Autism, into a very neat and tidy self-validating and self-sustaining psychological fact in the first place.

Only of course, it wasn’t a fact at all. It was nothing more than one profession dictating and reinforcing the terms and conditions under which it would see fit to operate.

By so doing they also set out the definitions and the frames of reference upon which the foundations our understandings of Autism were formed.

Which means that for decades, thanks to psychology, women with Autism were often left out in the cold, alone and confused, and more often than not, grossly misdiagnosed and subjected to harmful treatments.

It’s an incredibly sad but true piece of history and I can well understand why those within the world of psychology would like to pretend it hadn’t happen.

But ignorance, whilst it may be bliss for some, can prove to be incredibly dangerous for others.

I for one, have absolutely no desire to ever see this kind of history repeating itself again.

And yet..

Once again, our understanding of the way in which Autism presents in women is now being crafted in much the same manner.

Psychologists are telling us that women ‘mask’ their Autistic symptoms, hence the majority of the population will believe that this is true.

Yet history has already shown us that this notion of women ‘masking symptoms’ is not a particularly true one.

If, (as has been the experience of many older Autistic women), there has been a propensity within the psychology profession toward misinterpreting and therefore misdiagnosing Autistic women’s symptoms, then they should already have in their grasp, the many well documented cases of older Autistic women who’ve been misdiagnosed with other mental health conditions in an attempt to explain their ‘different’ behaviors.

This in itself, should be enough to indicate that the notion of women ‘masking’ their symptoms may not be entirely true.

After all, one cannot be misdiagnosed with a mental health condition if one is not showing any indications or awareness of having behaviors that would mark one out as being ‘different’ or in need of a diagnosis.

So are we to believe that these older women were just a rare bunch who were exquisitely bad at ‘masking’ their symptoms, because let’s face it, if they were actually trying to hide their differences and their difficulties, yet still ended up being diagnosed with a mental health condition, they must have been exceptionally bad at?

Or are we to listen to their eyewitness accounts and give ourselves permission to explore these hidden implications?

I for one, am in favor of taking the time to listen to the real life experiences of our older Autistic women, the ones who are only just now, after years of struggling to find answers, being acknowledged and diagnosed with Autism.

If we do, we may just find ourselves questioning the validity of the idea that women with Autism have a history of ‘masking’ their symptoms.

 

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46 thoughts on “Yes – Asperger’s may present differently in women – but…

  1. Masking of symptoms= I’m so smart, and a Real Autism Expert ™ I couldn’t possibly have missed that, let’s blame the wimmins! I think since autism research has long been biased in favor of males (as in general a lot of medical research) if there are differences in how it manifests, the system is biased towards recognizing it in males. I also think there is something about a lot of cultural anxiety about how boys are doing in school as compared to girls (they are labelled more with learning disabilities in general) On the other side of the coin, we could also ask if men are “masking” their depression symptoms, so they don’t get labelled or treated for that as much as women?
    I was labeled pretty young for someone my age (at age 10, and I’m now 32, in the U.S.) and my boyfriend (also AS) jokes it’s because that I have “male pattern” autism, that I was loud, had outbursts etc, so I was identified.

  2. It’s a cop-out for the psychologists. Just poor. Studies need to be done. Research. Perhaps ironically it will be autistic women who take the time and bother to get the work done. There is a huge gap in the knowledge of women and autism. Poorly funded perhaps? Or maybe just the need wasn’t there to look. The more women who go into science the better. But again it comes down to funding. Autism and Aspergers is being talked about more and more and so there is a hope that money is funneled this way and not towards a cure.

  3. I’ve heard that phrase many times: “women with autism mask their symptoms.” I think that it needs to be understood that it isn’t an intentional “masking.” It just means that we don’t fit into the stereotypical profile of male ASD. Females are socialized differently. Women on the milder end of the ASD spectrum are more aware of our differences so we mimic typical girls and we do what we can do to get by. However, this only works for so long which is why we often get misdiagnosed or diagnosed with co-morbidities (such as anxiety and depression) but not ASD. I was extremely quiet during my school years. I didn’t like attention drawn to me and I didn’t have any negative behaviors during school (other than constantly “daydreaming” and not focusing in class). However, my daughter (who is also ASD) is starkly different than me in so many ways. She has more impulse control problems and often fails at “masking.” Despite this, she got very little support from school. You see, she was considered too bright to need help. She now has health issues that are complicating the overall picture. She is now entering her teen years and spends most of her time locked away in her room (choosing not to interact with any of us). I guess that that is “good enough” for the school as long as she is keeping her grades up and not causing any problems. Then why am I heartbroken?

  4. I believe I have Aspergers and will be seeking a diagnosis soon, but I know for sure I have bipolar type 1 with experiences of psychosis. There seems to be very little discussion in mental health or Aspergers communities of comorbidities.
    To have masking behaviors doesn’t make sense to me unless someone knows what they are masking in the first place.
    I support an idea of a non linear process of social skill developments.
    It’s now usually accepted that gender is a spectrum of which nature and nurture are both influential. Therefore the learning experiences of girls tend to be different to the learning experience of boys therefore one example is a female might be taught how to do the laundry whereas a male might be encouraged to develop an interest in transport even in subtle ways. Maybe this should not happen, but it does. One example ischildren’s books aimed at boys often feature transport whereas girls often focus on friendships or appearance . Therefore our interests are going to usually be different. When those interests becoming guidelines for identification is it any wonder women are lost on the process.
    Another reason I support the call for more research and more female researchers. Another reason to support feminism too.

  5. So interesting! I’m 36 and have come to believe that I probably have undiagnosed Asperger’s as well. I intend to “seek a diagnosis” (haha – I’ll never think of that phrase the same way after reading this blog!) but I’m nervous about whether anyone will get it right with me. I became interested in ASD a decade ago for reasons I could not explain to myself, but I never suspected that I myself was on the spectrum because the so-called symptoms mostly did not sound like me. It was only after reading Aspie women’s blogs and THEN googling for lists of female Aspie traits that all the bells rang in my head. It seems like it should be patently obvious that current diagnostic criteria for ASD have a male bias and it’s not that women are somehow better at passing. Women and men tend to be different when NT so why shouldn’t they be when ND?

  6. Hi,
    I am a female on the spectrum and actually researching this very topic, of females masking symptoms and evading diagnosis. Actually the theory itself is driven by quite a lot of first hand accounts of women on the spectrum and there is currently very little academic interest in the topic. They talk about it, but only in reference to these first hand accounts. It’s also important to note that the term ‘masking’ does not mean completely covering up problems, it just means that they do not display typically as males do and the impairments are shown in different ways, and unfortunately, thanks to the media and all those misguided academics, they haven’t been able to see these difference, they have been ‘masked’ from their view. What does annoy me is that many of these academics who at one point were so driven by the male brain theory and these stereotyped viewpoints, have suddenly started throwing the idea around without bothering to look into it themselves!

  7. I find that I tend to agree…when reading symptoms of Asperger’s to my husband to see if it described our oldest son, he wasn’t sure if it sounded like our son (then 6 and subsequently diagnosed) but he thought it sounded like ME. Of course, by the time the second son was diagnosed, 12 years later, I was pretty sure that I was on the spectrum, but getting someone to take that seriously was harder than it should be. “You’re too self-aware.” Really? What do you expect from someone who has spent 12 years obsessing over autism and seeing herself at every turn? Thankfully, I was able to find someone to evaluate me (and my oldest daughter, who flew under the radar for years not because she wasn’t every bit as quirky as her slightly younger brother who was diagnosed first, but because she was just less inclined to hit or bite someone.)

  8. Reblogged this on vinedor and commented:
    I’m 71 now, and found myself having Aspergers in april this year (because of reading about Aspergers in the family). Reading this makes my cry for suffering too long. Miss diagnosed of better, never recognised in spite seeing four psychiatrists over time and never had helpfull therapy. Now I understand it all, but sometimes I’m crying it out, just like now. Thank you for this blog of yours (by the way, I’m Dutch).

  9. You’re so right and thank you. I’m 71 now, and found out myself having Aspergers in april this year (studying family cases). In all those years I’ve always been misdiagnosed, in spite of seeing four psychiatrist (because of bad functioning in the workingplace) and having therapy three times. I’ve always felt such a stranger in this world. Reading your blog made me cry. Although understanding and accepting I still have to grow into this and learn to cope in another way than I’ve been trying to. (By the way: I’m Dutch)

    1. Goededag! Ik spreek nederlands en ik hou van nederland, maar ik schrijf nu in engels. That must have been incredibly difficult for you, knowing that there was something wrong but not being able to identify it. I started to seek mental health help in about 2000, and didn’t get properly diagnosed until 2013, even though I had seen about 6 or 7 different psychs, including Andrew Lustig, the Head of complex and acute mental illness at the University of Toronto. None of them could figure me out. Now I’m trying to rebuild my life so that I can be an independent and productive member of society. So difficult! Have you heard of Autcraft? If you want to help kids with autism and like computers, maybe this is for you. http://www.buzzfeed.com/charliewarzel/this-minecraft-community-is-saving-the-lives-of-children-wit#.yr94AmLOnz

  10. There are two meanings of “mask.” One is the efforts by the individual to try to comply with those around them regarding the “feels” they’re getting off the body language and behaviors of that person. YES, Aspergers women mask, quite better than men. Those of us that consciously mask read this meaning into every instance we see it used in regards to autism, quite naturally so because we are living it…. but that is not the only meaning being ascribed to the term.

    On the other hand, YES, there is the seizing of that term by professionals to justify their lack of recognition of the “symptoms” as autism, instead diagnosing erroneously with personality and mood disorders – with the tools to treat those disorders then failing miserably, often making things worse, because those are the wrong tools. THIS is the term being addressed, quite accurately by our wonderful author, and I applaud her calling it like it is.

  11. i would love some insight from older women with aspergers and or asd … since it appears my daughter and husband share this gift/curse (i say curse because it comes with extreme anxiety for my daughter, and i hate seeing her cry and not knowing how to help besides holding her and saying ‘i’m sorry i don’t know how to help’) … she has been tested by early intervention and denied but she repeats herself often, lines things up, obsesses, and deals with social and general anxiety

    1. Hi Aub,
      I have some social anxiety and sometimes end up crying. If I’m crying, what I need to stop crying is a lack of emotional input. I’m crying because my emotions and anxieties are spilling over the top of my bucket, and I need to let some out until I get it under control and calm down again. So I usually want to be alone, but sometimes I want support too, just for someone to hold me quietly, and not express any emotions or anxiety, or even comfort. I do like the pressure of being held though. When I was younger my mom would find me and rub my back, but that usually didn’t help and I would have to wait for her to leave before I could calm down. What works for one may not work for another though. Wishing you the best.

  12. I think there is a lot going on here. First of all, I think it’s a two-pronged problem going on here.

    “Professionals” have never really understood how autism presents in women because of male-specific focus in research and because of that, diagnostic criteria. Also, there needs to be more unbiased education for these professionals. You pretty much nailed that. However, I know that masking is also a real thing too. The root reason for women not getting diagnosed is because of a lack of understanding that women can be autistic and that autism doesn’t always show up in women the same way it does in stereotypical tommy-the-kid who can’t keep quiet, rattles off facts about every car in existence, and likes choochoo trains (my apologies to anyone in the comment who has an autistic son that has “stereotypical” autistic interests… at least according to the “professionals”).

    But also, because of the stigma of autism and/or people who “act” neurodivergent and are thereby subjected into submitting to compliance training. By compliance, it doesn’t always have to be defacto Lovaas ABA though. It can be your mother telling you to not spin and flap your hands “because it looks wrong” out of shame. It can be your acquaintances growing up judging and shaming you for doing things differently (NT females are good at that kind of social-based drama and rejection like that). It can be your kindergarten teacher withholding you from gym class, art class, music class (the highlight of the day because art and music have always been my special interests) and screaming at you to give her eye contact and grabbing you by the chin and staring you in the eye like a sociopath devil. If the autistic kid is bullied enough they learn to mask out of survival, but it is exhausting and and eventually they will burn out and shut down if they don’t implode and melt down. It’s not a long term strategy. But many of us grew up with masking as the default face in the jar by the door that we use when we go out in public (only for the mask to later suffocate us when it isn’t usable) because we have feared for our safety in the classroom, and feared for our security against being excluded once more. Unfortunately, in my case, I wasn’t diagnosed until I was 17 (for the record, I am 30). All of the above stories about being bullied, being trained like a damned seal by my kindergarten teacher, shamed by my mother for my “behaviors”, all of that happened in my life. And unfortunately, the longer it takes “professionals” to know that women can be autistic and identify autism in women, the more this ugly cycle of judgement-shame-compliance repeats itself and yet another female kid finds themselves masking to attempt surviving in life and thereby the “professional” (who couldn’t recognize autism in a female if autism chucked a brick at their head) would pick up on it even less than they already do (which doesn’t say a whole lot because a lot of them suck at picking up on it already).

    A lot of “professionals” also question “how did you manage to go without a diagnosis for so long” or “what makes you think that you have autism now?” and so many of these questions are face palm questions. Like “how do you know you are autistic, when autistic people aren’t self-aware” is extremely counter-productive, and is exactly why Simon Baren-Cohen’s “Theory of Mind”™ bullshit needs to die a horrible death because it leads to invalidating crap like this. As for “how did you manage for so long”… it’s not “managing” really, but being stuck on survival mode and breaking down. And it’s not the autistic’s fault when the professional has zero education on how to identify it properly and too much bias and stigma getting in the way. As for “why now”… a lot of people didn’t know they were autistic until they had the knowledge, language, and terms to identify their struggles, their identity, and their entire existence with. It didn’t make them less autistic before they knew, they just could identify it finally given those “bell ringing” validation moments. As for depression and anxiety? A lot of depression and anxiety is co-morbid with autistic people, but in particular seems in tandem with autistic people who have learned to mask at the expense of their wellbeing, who have been “trained compliant” or have tried desperately to cope without knowing the ins and out of their neurology and how to accept it and thereby accept themselves. When the autistic is told that they can’t possibly know themselves, and trained to be a compliant animal instead of accepting themselves and understanding themselves, they lose every time. When they are told to monitor their every “behavior” until they are out of spoons, they lose and become anxious because they are afraid to be themselves for fear of consequence. When they fail over and over again and don’t know why they are different to know how to do things in a way that works for them or have a way to identify themselves, they are adrift with blaming themselves and depression comes along. Which is why the ignorance of “professionals” and the thereby continuation with insistence on compliance going hand and hand is so damned dangerous. Also, people use compliance as a way to grade autistics and tell them that they are “invalid” autistics with false (not-really) “compliments” like “I would have never known!” and “but you look so normal!” and crap like that. To that I usually reply “What does autism look like then? Is its name Bobby? Does it have poofy hair and special shoes?” I’ve shut up a few people with that statement.

    I think I should start a blog. because clearly I couldn’t stop with this comment. lol

    1. Yes! One clinician (evaluating one of my sons) said that I was too self-aware to be properly evaluated. Good grief, dude. I know he meant well, but yeah. When I was finally evaluated, the psychologist commented that it looked like I had figured out what works for me in terms of environment: we live out in the country where it is quiet and BEAUTIFUL and have lots of space to spread out in and a bunch of animals and I don’t have to interact with too many people unless I want to. I don’t have a “real” job I did, years ago, and I was miserable and didn’t understand why I was disappointing my bosses. Going into it, it seemed like there was no reason that I shouldn’t be very successful. Ah, but doing well in school and training doesn’t prepare you for the OTHER expectations that people have of you in a real job, like reading between the lines and being diplomatic and social and and and….

    1. My mom, who taught special ed. for years, yelled at me, “I’m an expert and you don’t have asperger’s!” for about ten minutes when I told her. People can’t tell just by looking at someone. Most people can’t even tell if they hang around me for a few hours. But live with me, and you definitely know.

      1. This reminds me a lot of my biology prof in college. He always said things like “the diagnostic criteria to asperger’s is so loose that they would say that /I/ (he himself) would have it”… (This was back in 2008 before the DSM-5 came along). He used to always mention that as a way to invalidate existence of ASD diagnoses (which came up when I outed myself to a classmate who picked up on it because her brother is autistic too). It was rather dismissive. He was a brilliant prof otherwise and taught me many many thing (like how to separate the good from the crap and what makes good research and so on), however, ASD was not his strongsuit when it came to understanding. Erstwhile he was dismissing existence of it…. He showed many many signs that I picked up on right away that he’s likely AS and was never diagnosed because someone drilled into his head that you can’t have ASD and ever possibly have a successful career. His denial was just so bad. This right here is the danger of hanging around too many ignorant people who buy into the autism speaks ridden tragedy bullshit. Specifically “teh nevars” as I call them– when people paint autism in the bad light of slippery slopes… Oftentimes when highlight deficits a kid has somehow turns into hocus pocus crystal ball projections of “my kid will never do this and my kid will never do or achieve that.” (Which oftentimes, the “case of teh nevars” is brought on by ignorant ‘professionals’ who seem to think that 1) people have the same amount of skills in life at age 30 as they do at age 5 2) “your kid will never do this…. But let’s intervention them to death, and come visit a link to my alternative medicine and herbal remedies! Without my help your kid is hopeless!” And stuff like that). I hope this guy finally saw the light and got past the biases they filled his head with and reached understanding with knowing himself enough and not thinking of framing it in tragedy rhetoric as a way to dismiss others.

    2. Amen. I love my step mother very much, but she doesn’t believe my self diagnosis and neither does my dad. She is a psychiatric nurse. I know I have AS, but nothing I say would ever convince them.

  13. I strongly suspect I am undiagnosed, though with all the trouble surrounding getting a diagnosis I’m not sure I want to bother seeking one out. I think the male bias in Western medicine is as prevalent in psychology as it is in other heath disciplines. They just don’t SEE us. If the symptoms don’t present in the way they’re used to seeing in (male) patients, then the symptoms aren’t real or don’t exist, and that goes for more that just autism. Is it so difficult to imagine that some things look differently with women than they do with men? Look how long it took for them to realize that heart attacks don’t present the same way with us; this is no different.

  14. Absolutely! I know people are just trying to be helpful when pointing out possible gender differences, but we can’t lose sight of the fact that fundamental bias occurs, and that’s always the very first thing to consider!

  15. I do agree with you, to a point, but also must play devil’s advocate just a little. I am an older woman (let’s just say over fifty) who only began to suspect my autism in 2009 after doing research for an (almost) unrelated project. The more I found out about it, the more I became convinced I was reading about me – except for the stereotypical behavior of stimming, which I wasn’t (at the time) aware of doing. The more accounts of female autism I found, the more convinced I became, and finally sought diagnosis a couple of years ago. The psychologist (laughingly) said I was certainly on the spectrum, but wanted to know why, at my age, I wanted to know. Obviously I had “survived” this long without the label.

    Well, anybody in the same situation KNOWS why you want to know, so I won’t go into that, but the point is, I never had been diagnosed for anything. My parents were loving and accepting and never treated me in any way as different from other children, though I always felt that way at school. I now am sure my father, at least, was also autistic. My report cards say things like, “prefers gentle, quiet play,” “plays by herself,” “lacks social skills.” My grades were indifferent but I had no real learning disability, though I process almost everything except music very slowly. I suffered severe depression in my teens and throughout my twenties and thirties, but never to the point I sought medical care. It could be said my differences were “masked” by a veneer of normalcy.

    This is an enormous simplification as I won’t subject you to every nuance of my upbringing and subsequent complicated life and experience, but I basically kind of glided through life being mostly ignored by teachers, other kids, and eventually the other adults I came into contact with. I wasn’t interested in the things they were, though I tried to be sometimes. I didn’t say the right things in the right way. I didn’t like large groups. I avoided gatherings of all kinds. It was less stressful and painful to stay to myself as much as possible. I wasn’t knowingly masking anything, but I was quiet and kept to myself so much that no one noticed. And I was definitely different, I just didn’t know why.

    As a teacher now, I see many students just like this – mostly girls, but also quiet, sensitive boys. I usually have around 450 students a year and many of them I see for two to three years; I get to know them pretty well. Are they autistic? I think at least some of them are on the spectrum somewhere as they are just like I was, which only adds to my belief that autism as a neurotype is even less rare than is currently believed. And I don’t understand why that should be a problem. And none of these children are purposefully “masking” anything, and yet, because they are quiet and well-behaved, they may not be diagnosed.

  16. I was lucky enough diagnosed when I was a kid. I really think there is a problem with stereotypical presumptions based on ASD and it being a masculine disorder. Girls with autism are less likely to be aggressive or be disruptive in class. Usually they are taught to act like everyone else to avoid being bullied or ridiculed – even if they are unsure why. Girls and women can be absolute bitches to other girls.
    People who say “You don’t seem Autistic” haven’t know me for long enough or live with me.

  17. I do see where the idea of ‘masking’ is coming from. As a woman living with autism, who was diagnosed a very young age, I grew up with bullying in my everyday educational experience and learned to ‘mask’ my own symptoms – the ones that drew attention to my differences and made me a target, in order to survive my school years. I do find however that I struggle as an adult, when the ‘mask’ slips, in social and working environments, and the result is a severe lack of understanding or willingness to understand from most people around me. It is exhausting to maintain a socially acceptable ‘mask’ when dealing with people everyday and I find my energies are running quite low. Yet until the rest of the world evolves and looks past our differences and see our gifts there’s no other foreseeable way through life. If hi-functioning women who un-diagnosed are donning that same mask, I wonder if it’s because they are somehow aware of their differences and the perceived treatment of them, it’s no wonder they too have learned that this is the only way they can survive life in world where no one understands them? Maybe the fact that this focuses on Women and ‘masking’ illustrates the continued suppression of women by society, but linking that to autism and misdiagnosis, just illustrates the problem with society’s expectation of women and how that autism sadly is no escape from that suppression. Men are told to act and think a certain way also and judged if they don’t fall into a mould, just as women are. It’s only now in the last few decades that their suppression is coming to light also. I know of several men who are hi-funtioning autistic who don’t fit the mould and because they can’t relate to what is socially acceptable norms of society they feel just as much the sting of being ‘loners’ as I and many autistic women do.

  18. I think that with Asperger’s syndrome it’s the consequences of the syndrome and not the symptoms that’s the problem for people. I’m a man with AS and the consequences for me have been a lonely life; no job and no relationships – total social isolation and exclusion. For women with Asperger’s they are much more easily able to find a place for themselves in the world and secure jobs and end up as wives and mothers. I also suspect that a woman with Asperger’s syndrome is far more attractive to the average man than someone without the syndrome…that’s definitely not the case when the genders are swapped.man; we are constantly shunned by women.

  19. I have Asperger’s, and I mask quite well, in terms of “running an emulation of a normal human”. This will, however, only take me so far in social situations. I can get by up to, but not including, intimate relationships, since for that I have to drop the mask, and when I do that, it destroys the chance for the relationship. So I can get by up to a point, and no farther: after that point, it’s impossible for a genuine human connection to occur. I’ve more or less reconciled myself to this; I interview well in emulation, it hasn’t interfered with my ability to work in a technical field (in fact, in many technical fields, it’s an asset), and so on. I have a number of good friendships (a disproportionate number of them with other men and women with Asperger’s), and spoken on the subject of what to expect with an Asperger’s child, and so on. But in the end, it’s rather lonely.

  20. Reblogged this on Under Your Radar and commented:
    Ho-lee smokes! What a great post! So, so many great points in this. It really speaks to the inherent sexism in so many “sciences” — especially social sciences, which in my opinion have no excuse for this, really. But women have gotten short shrift from psychology in countless other areas, resulting in epidemic levels of iatrogenic harm. But then, maybe we’re too “crafty” for those hapless psych folks to figure out.

  21. What a fantastic piece – and great comments, too. Iatrogenic harm is widespread, and the fact that there’s an official term for “practitioners who mess up their patients because they screw up royally” should tell us something. Frankly, it doesn’t take much to hide from people who refuse to see — I’m in both boats, really, as I have both deliberately hidden what was going on with me AND I’ve been ‘hiding in plain view’ in front of people who just couldn’t be bothered to step outside their little nexus of power and influence to practice some real science.

    The issue, as I see it, is that we autistic women may present clearly enough, early on, but those who are interpreting our behaviors screw up so royally, that we are either beaten into submission a-la ABA “training” and taught to keep our “quirks” under wraps… OR we’re saddled with some other misdiagnosis-du-jour which can impair us with unnecessary meds (which we’re ultra-sensitive to), stigma, and/or a completely skewed understanding of who we are and what we are all about.

    And all the while, we are denied access to the meta-patterns by which we can understand our lives and our experiences, effectively shutting us off from the very knowledge which can heal and restore us.

    The psychological/psychiatric/medical community owes us a big-ass apology, and they should be falling over themselves to get our “take” on things — because we could enlighten them so very, very much — AND keep them from doing even more damage.

    But I’m not holding my breath. I have to live my life, after all. My amazingly autistic life.

    1. You are so right VisualVox. You do know the system is really doing something wrong when even professionals have to come up with an official term to describe the harm they are causing their own patients. I love your line that “it really doesn’t take much to hide from people who refuse to see”. But I’d add that there is absolutely no need to hide from those who are incapable of seeing you in the first place.

      You make many fantastic points.

      Thank you.

      1. Thanks 🙂 I guess I hide to escape their judgment and avoid the confusion of full-on social interaction. I’m not ashamed of myself. It’s just too much work.

  22. Okay. I’m a male, autistic autism-specialist psychologist. I’m the ex-husband of an autistic woman with whom I have an autistic daughter. All three of us enjoy a great relationship as a family, and we’re happy with that.

    “Which of course is how psychologists, via their own actions in refusing to view such women’s behaviors as evidence of Autism, turned the notion that women do not experience Autism, into a very neat and tidy self-validating and self-sustaining psychological fact in the first place.”

    I wish I could say for certain that this is not true, but I cannot. This is what the British Psychological Society did with many thing before it became a somewhat more enlightened organisation. It’s not perfect still, but it is at least heading there – which is more than many professional organisations are doing.

    “Only of course, it wasn’t a fact at all. It was nothing more than one profession dictating and reinforcing the terms and conditions under which it would see fit to operate.”

    Well – professions have to be self-determining in terms of how they operate. That said, there needs to be to least some ‘intelligence’ built into the system that determines how the profession works. If that profession cannot respond to changes outwith itself, for example, it isn’t going to do very well for the people who need to use it.

    Part of such ability to respond is at the core of understanding if and how ‘being autistic’ becomes evident in females (I use this term because I want to make it clear that – if there are any differences in how a person’s being autistic that can be seen at all – such differences are likely to be there (albeit in more subtle form) in childhood).

    The problem lies in the fact that the earlier criteria were developed from clinical observations of boys. Given the situation at the time, this might be understandable but – as sex/gender equality issues have been seen to become more important and more prominent over time – the issue of detecting what one writer has called ‘an amorphous set of states’ has needed to be raised. And why has it needed to be raised?

    Well – during my studies in physical and molecular anthropology many, many years ago, we learned about various domains of anatomy and physiology in which sex dimorphisms exist: differences – sometimes rather subtle and sometimes not so subtle – between how or to what extent or in what ways a given trait might present itself in males or in females. An example might be body fat distribution, which is different in males versus females. Evolutionary reasons relating to reproduction are given for this dimorphism.

    For a long time, psychology has tended to see itself as not very related to biology. In the 1960s-70s, for example, when issues regarding genetic influences on behaviour came to the fore, many psychologists reacted rather explosively (almost literally) to the idea. Skinner (a much maligned psychologist) readily acknowledged the role of genes in behaviour overall, and – whilst not concerning himself with the biology of the brain and nervous system – absolutely insisted that this biological stuff was essential to gaining a full understanding of the variation in behaviour: he preferred to leave that to psycho-biologists, whose inclinations in research were better suited to the study and understanding of the anatomical and physiological factors that influence thought, affect and behaviour. Most other psychologists at the time wilfully ignored these factors – much to the detriment of psychology and those whose lives it could have otherwise made better. This allowed the prolonged existence of Freudian ideas on behaviour where the dimorphisms occurred in the pseudo-explanatiory fictions being used such as:

    A- “Well, clearly this man is behaving in such an erratic manner because he is under great stress!”

    B- “This woman is obviously behaving in such an erratic fashion as a function of her badly-behaving uterus!”

    Statement A, if one changes the words ‘man’ and ‘he’ for any other paired gender-identity-appropriate word pairs, would clearly hold true: stress tends to bring about erratic behaviour, as it becomes difficult to make automatic use of any executive function skills one might have learned over time.

    Statement B, on the other hand, when the words ‘woman’ and ‘her’ and ‘uterus’ are replaced by the words ‘man’, ‘his’ and ‘testicles’, makes it clear why the original statement – as applied only to women – is bollocks.

    Had psychologists acknowledged the roles of biological influences on behaviour from the start, this sort of dimorphism could have been avoided and we could have better served everybody by understanding that – just as anatomical and physiological dimorphisms exists – so do behavioural dimorphisms. And, given that the behavioural variance observed in being autistic is polygenic and is not confined (in terms of gene loci) to the arm of the X-chromosome that is now not masked by the missing arm of the Y-chromosome, it is clear now:

    that the once-favoured idea that ‘one in four autistic people is female’ is not in fact correct;

    and:

    that we need to determine through research what the actual cognitive-behavioural dimorphisms that we have no reason not to expect in autism actually are.

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