How Invisible is Autism in Women?
June 3, 2008 by Kristina Chew, PhD
Filed under Health
Writes Bridget Orr, a young woman with Asperger’s Syndrome in a piece accompanying It’s not just boys who are autistic, an article in the June 4th Guardian:
Female “invisibility” in the autistic spectrum should be a feminist issue.
Selina Postgate, 53, was only diagnosed with Asperger’s Syndrome last summer; she expresses a similar sentiment:
“Being an autistic woman has been pivotal to everything that’s happened to me. If I’d been an autistic man, my story could have been very different.”
Another woman with Asperger’s, 21-year-old Robyn Seward, also notes “the invisibility of girls on the autistic spectrum and by the association of autistic traits – social awkwardness, for instance – with masculinity.” Four times as many men are affected with autism than are women and there is speculation that autism is underdiagnosed in girls and women.
Returning to Orr’s comment—-imagine autism as a feminist issue……
Well, Ms. Orr will have to explain why similar ratios have been found in other developmental disabilities such as attention deficit disorder, dyslexia and stuttering in which the socialization issues are irrelevant. This argument that these females on the spectrum pose is a cliche that I don’t believe has any scientific basis.
To the contrary, I think that a good examination of the issues at hand could talk about the stake we place in certain areas that are primarily found in males, to such a degree that the focus on the creation of some disorders is treated in a male-centric fashion, or how the disorder is obscured in women because of societal constructs of things along the lines of modesty. A good place to start with general disorders is to look at that line that seems to blur between “unmotivated white male teenager/preteen” and “ADD” that clinicians are currently struggling with at some level.
Cliff
Also, note that “scientific”, in this context, has to be treaded carefully, because what is considered scientific is usually the consensus of those in mainstream scientific institutions, and it’s unreasonable to assume those individuals are separated any more than the rest of us from societal constructs and assumptions. Further, it’s similarly unreasonable to assume that the scientific method inherently discards societal bias, because it really doesn’t. Remember the research that described how black individuals did better at sprinting but not better at long-distance running in the 1970’s or so?
Cliff
Very interesting. I wonder if that had anything to do with why we had such a hard time finding a diagnosis and getting appropriate help in school for M?
I have believed, for a long time now…that my son gets his Asperger’s from me. While I would not say I have Aspergers, in the clinical sense of the term…I identify with many markers. It explains so much of the difficulties I had as a pre-teen and well into my twenties. I think, regardless of sex, Aspergers is often mistaken for awkwardness. I’m not too sure if I agree that its a feminist issue, but perhaps its more of an issue in accurate diagnosis?
It would be a feminist issue in so far as what the inaccurate diagnosis implies if gender is involved. Now what is implied by the inaccuracy based on gender could be a number of things, but it’s likely to fall under that umbrella.
Cliff
I think the first “label” I ever had (in preschool or thereabouts) was something like “emotionally disturbed”, and it never really occurred to me before that this could have been influenced by the fact of my being female.
I was born in 1978, when autism was still considered very much a “boy thing”, and there were (and are, apparently) a lot of stereotypes floating around regarding everything about a woman’s behavior being attributable to “emotional upset”.
(I also got called “sensitive” and “dramatic” and “irritable”, and sometimes I do wonder if those same words would have been used if I’d been male…)
I believe that invisibility of autism in women is very real. Growing up, I was always called “awkward” and “off” and yes, I felt that people thought I had a sort of masculinity.
I was not even diagnosed with Asperger’s until I was almost nineteen. And even to this day, people rarely believe me that women can be diagnosed with autism. It’s a terrible issue that I am happy is being addressed.
“Sensitive” I have definitely heard applied to my husband and probably “dramatic” too.
I found it very interesting how the Guardian article hinted at how expectations and norms about gender might play a part in someone getting, or not getting, a diagnosis of autism or Asperger’s. What’s the construction of gender in autism…….
We had absolutely no problem obtaining an autism diagnosis for our daughter. Indeed it would have shocked us if the diagnosis was anything else. What perplexed us was the advice to wait before seeing someone who could provide the diagnosis. It was during the waiting time we learned about autism and then went to Children’s Health Council on our own dime to see if her suspicion was true.
I don’t think the wait was because of our daughter’s sex, but because the pediatrician was unfamiliar with autism. Soon afterwards the pediatricians were mandated to take a course and any sign of autism warranted a screening.
The male/female ratio is much lower in low-functioning autism. Do the diagnostic tools for high functioning autism, where the ratio is the greatest, prejudiced against females. I don’t think so.
If “autistic” behaviors are seen to be more anomalous in females, then one would think they would undergo screening at a higher rate.
I’m not a physicist but I’m in daily contact with experimental, theoretical, machine, particle and photon science physicists many at the top of their fields. While it is a male dominated profession, women are making inroads. Some following in their father’s footsteps, others without any scientific pedigree. They are drawn to science for the same reason as their brothers, an insatiable curiosity about this world, and the confidence that they can help to unravel its mysteries. These women overcame what ever prejudice there was with dignity and quiet determination.
kristina: Well, I certainly do not attribute everything that was ever said about me to gender…I was just sort of musing, particularly since a lot of my sensory issues got “missed” and interpreted as emotionally-based. I know that sensitive men exist and are described as such.
@AnneC, I was just very interested in how you noted that certain words were used to describe you instead of others. “Sensitive” was not used (I suspect) in a positive way of my husband—-more in the sense that, he was “too” sensitive, not tough, took things too hard (especially emotionally).
@mayfly,
More and more I meet women of all ages who are most likely on the spectrum. They would of course have been born years before your daughter and no one would have thought of autism in regard to them. Some of these women are close friends and thinking they may be on the spectrum has explained some things to me.
The topic of women in the sciences, I think I will leave for another night!
It wouldn’t surprise me a bit if my older daughter was closer to the spectrum rather than ADHD; there are some social difficulties showing up that are atypical. The possibility of Asperger’s had been mentioned earlier but evaluations were not definite; there is also a distinct possibility that she is working really hard to compensate for things she finds hard to understand and to fit in. Only recently it has become more obvious that compared to young ladies of an equivalent age that there is something different and she recognizes some issues with relating to others.
As for the perspective of of more boys than girls. Suffice it to say that even folk who might know better ask me about my “child with autism”, more often than not, the question is, “and how is your son?” although my conversation is exclusively about the girls (no boys in the family). When I correct them, they shrug about “sorry, mostly see boys in my practice”, etc.
It took a long time to get scheduled to get a diagnosis for Eleanor, but once accomplished, the diagnosis itself was straightforward. For our older daughter, to move from “quirky” to “immature” to something more took quite a while; at least through the end of elementary school and to the point of an IEP, high school. In that case it took an an independent outside evaluation to demonstrate that she needed the extra support and it more than a case of “needing to get organized” or “applying herself”. We should have done it sooner.
Was it discrimination? I don’t really know.
I’m glad to see articles being written about this issue, but it features at least one misrepresentation. Two of Kanner’s original 11 research subjects were girls. Asperger only observed boys. And of course, neither of them were particularly scientific by today’s standards.
The only ASD books I’ve found specifically addressing women seem to be “Women From Another Planet,” which is a very interesting anthology, and “Asperger’s and Girls,” which has some good stuff and some lousy stuff.
I was diagnosed at 17, by a professional who believes that AS girls often present differently and are overlooked. I do believe my gender did play a role in my treatment growing up. At the age of 10, I had a lot of problems in school. My male guidance counselor, according to my mom, didn’t take this very seriously and seemed almost to think that I was just “overemotional” and “acting up” in order to get my way. (i.e. I was acting like a “spoiled girl” or a “drama queen.”) I know some boys are treated as a burden, too, but the underlying language can be different. Unlike some of my male classmates, I was not formally evaluated for AD/HD or anything else neurological, though the school did suggest talk therapy.
I came accross a really great academic article yesterday which discusses autism and gender (feminist) issues. The citation:
Bumiller, Kristin. “Quirky Citizens: Autism, Gender, and Reimagining Disability.” Signs: Journal of Women in Culture and Society 2008,vol. 33, no. 4.
I have thought a lot about this myself. While I tend to be fairly obviously autistic, and manifest this in a way that is familiar to people who diagnose autism, I was also when young told that I was just too sensitive. When I was young at school and in pain, nobody could notice what to me was obvious “I’m in pain” body language. So I made an effort to exaggerate my body language so that I’d get noticed (and when I developed better speech, would be believed when I said I was in pain), but everyone thought I was “faking it” for attention. It hasn’t been until the last few weeks that it finally occured to me that these might be why people outside my parents have refused to believe when I’m in pain.
It’s especially interesting that Asperger studied all males whereas Kanner had some females, and then now we see that people identified following Kanner’s work have a higher amount of females in it, whereas people in the Asperger category have a much high amount of males. From what I’ve seen, most people with the Asperger diagnosis have traditionally been more easy to “explain away” as troublesome rather than neurologically different/disabled, so perhaps this greater grey area to an outside observer would leave their socially-absorbed gender expectations to affect their perceptions and consequently diagnosis of gemales.
My Mother’s Day “present” from my mother was a conversation about me growing up. She apparently read Tony Attwood’s book “Asperger’s in Girls”. She said she wished she had had that book when I was growing up, that I had everything on the diagnostic list as he described it. She said it explained all the questions she had when I was a kid and couldn’t seem to figure out how to fit in at school. I could do all the schoolwork, but I was totally clueless when it came to relationships and how I effected others. I was also diagnosed with CAPD as a child and underwent behavioral therapy to learn to compensate for this.
Anyway, your post got me to thinking, and I wrote too much so I turned it into a reply post!
I don’t know if it’s a feminist issue, but it might be. Here’s what I do know. I’m not diagnosed with anything, but the following characterized my childhood and continue to persist in my adulthood:
I’ve been called “brusque” more times than I can count. I’ve had people say to me, sarcastically, “Tell us what you really think,” as often. I’ve said things I’ve meant but that have been mistaken for jokes because people just don’t say things like that. I can’t tell when someone’s pissed off at me if they’re being passive-aggressive about it. I don’t understand eye contact. I don’t realize when I’ve offended someone, often. Salespeople seem to get upset easily with me. People often ask me if I’m “all right” when I’m just fine.
In elementary and middle school, I was systemically shunned and bullied, with intent, throughout. My common sense only very recently entered the same ballpark as my intelligence. I sometimes go out wearing two different shoes. I can’t stand the feeling of tags, things around my waist, makeup, and on and on. I suffered real depression and debilitating anxiety from the age of six…real, debilitating. Until recently, I never learned to articulate my feelings well, but they were there and they were (and are) powerful.
I am still in awe of people who appear to socialize effortlessly, and my entire life, my socialization has been conscious “copying,” not natural. I rock, I hum, I do breakbeats, I hold my hands in weird ways when still. I only recently learned how to manage emotional extremes. My response to emotion is self isolation.
I was not one of those girls whose “feminine” social skills somehow helped me through in the context of my social disabilities. I was flat-out odd, unable to associate with my peers or understand them, my teachers usually didn’t like me (let’s say that Alex Barton’s story rings quite true), and I literally had no friends at all until high school.
The above isn’t to whine. I’m fine, happy, have friends, a spouse, three beautiful (but odd) children, a great job, a good education. But I had to traverse some seriously dangerous territory that included suicidal ideation and self harm, among other things, to get to this point. Had someone recognized my condition–which was at least PDD-NOS–I think my path would have been considerably different. Of course, back then, no one was recognizing much of anything if you were able to speak at all.
So, I can’t tell if it’s a feminist issue, per se. I think it’s primarily an awareness issue, something that’s wide open for people to explore and understand better. Girls like I was are out there now–I know a couple myself–and it would be in everyone’s best interest not to leave them flapping in the wind. No pun intended.
We have recently come to the realization that our 11 year-old inattentive ADD daughter has high functioning autism. It wasn’t so much an “AHA!” moment, but a “DUH!” moment. Cest la vie! Middle daughter was diagnosed with combined-type ADHD last week and our 3 year-old son has classic autism.
I think, looking at the comments here, there is very much a feminist issue implicit, because all of these assertions of behavior, from “acting out” to “brusque”, lie on some pretty biased notions, most prominently that the female form of behavior is rooted in irrationality and emotionality and thus any kind of self-advocacy or expression is illegitimate and, notably, I doubt I would have been called “brusque” for many of the same behaviors as Emily notes.
Cliff
Cliff
I read the Guardian piece today and wrote a letter in response to it. Life might have been different for Selina Postgate if she had been an autistic male, but I can’t agree that it would have been necessarily any easier. There are two separate sets of difficulties autistic males face, one in youth and another in adulthood.
As a boy, she may well have had the same miserable experience I had at school, being shunted from schools to special units and finally ending up at a “special school” (Kesgrave Hall in Suffolk, although that particular school had yet to open when she was young) which was in fact a dumping ground for secondary-age boys no other school wanted. She (or rather he) may well have found that geekishness was associated not with “masculinity” but with weakness, and that if he complained of bullying or other unjust conditions, he would be accused of being “mouthy”, as I often was. (I am not saying none of this happens to autistic girls.)
In adulthood, there is no guarantee that a man with Asperger’s will find a sympathetic soulmate, no matter how accomplished he is in his field; anyone familiar with the international IT scene will know of people with tremendous technical skills but who are socially isolated and without partners; the respect they may build up with their achievements may well be tempered by general hostility to their blinkered adherence to certain set ideas.
In addition, there are examples of notable autistic women; Temple Grandin and Donna Williams spring to mind. I don’t want to make any judgement on Selina Postgate, but I doubt that her lack of personal fulfilment is solely down to her being a woman. She has written elsewhere that she has two daughters; I have never lasted long enough in any relationship to produce children.
Cliff, you’re undoubtedly correct. I realized a long time ago that behaviors that I exhibit that people call aggressive, brusque, antisocial, self-possessed, even masculine, are only described that way and considered “negative” or “aberrant” because I am female. Were I male, they would be admirable and useful in what I do. I also have a very analytical mind and good spatial skills, also traits considered “masculine.” There is the “androgenization” hypothesis of autism, and I do have a suite of traits that suggest some androgenization in the womb (finger ratios, etc.), and I think that leaves people at a disconnect because I present an unquestionably female/feminine appearance.
Matthew, as Mick Jagger et al. amply demonstrate, the length of the relationship is not necessarily a prerequisite for reproduction.
Emily, I run into a lot of the same as you do. Apparently I’m “aggressive” and “too blunt” and it’s “not attractive for a girl” (and I do look very…very…girly). But then…I’m nowhere NEAR as rude as my male friends, and I’m the one who gets called on it. What the heck?
Back when the extreme male brain tests were floating around the internet I took them and fit the stereotype pretty awesomely.
Yeah, “blunt” is not a trait widely admired in women, and it steered my choice of job. If you are blunt as a man–it’s either a “guy thing” or interpreted as decisive. Be blunt as a woman and don’t be surprised to find yourself at the receiving end of the word that rhymes with rich.
I recall many times thinking “this might be easier if I was a guy” (since I’m not good at playing the girly card), but I expect and have seen that there’s a lot of gender expectations in the other direction as well.
I guess in re: diagnosis, does this point out that women are better compensaters or that those signs seen in boys/men are a red flag whereas in girls/women it is seen as some kind of childishness, social skill problem or hysterical behavior? Is the point that social constructs or expectations of prevalence get in the way of diagnosing, or that we are seeing differential manifestation? Or all of the preceding?
@Tanya, I’ve had a few “aha” and “duh” moments in realizing that some friends and others probably have Asperger’s—-explained a lot of things I’d often wondered at.
Good questions, Regan, ones I’ve wondered about before. It’s pretty entertaining being a direct, blunt woman in academe, in science. Scares everyone to death. And yes, I’ve often been on the receiving end of the B-word, so much so that I couldn’t care less.
Kassiane…my favorite has always been a dissection as to whether or not my behavior is “ladylike.” Maybe not, but it’s usually pretty gentlemanly.
One thing I’ve learned over the years is modulation, not because I’m trying to be more “girly” but because I don’t enjoy revisiting mentally some of my more in-your-face missteps.
On those brain tests, I score neutral–right in the middle of male:female. But I can almost feel in my brain that I’m using it in a masculine way. It feels like a muscle to me, and I use it like that. That probably sounds bizarre, but so it is. Somehow, it muscles its way past a lot of extraneous crap and goes straight to the core of things, like zooming down a tunnel. It’s hard to describe, but that’s how it feels.
Regan: Yeah, those were some of the questions I was kind of thinking about, and I suspect that perhaps both points are true. Obviously, when some values are stressed in certain groups, those values tend to become more apparent by means of reinforcement. But, especially looking at comments like Sarah’s and Melody’s, I think the “hysterical woman” stereotype does seem to be coming to play as well. Given that both could exist at the same time and affect different female individuals in such a way as to deny them the diagnosis, I think it’s well plausible that those factors alone create the diagnosis gap.
I looked at the article Sarah mentioned, as well. I liked how Bumiller did criticize Baron-Cohen’s gender essentialism, something I’ve always quipped with before, and the biased nature of his distinction. I never particularly liked that distinction when it was popular, either, for many of the reasons she noted.
Thinking about it, actually, I spent a lot of time in high school arguing about various aspects of philosophy with two identical female twins. They were extremely direct, socially distinct, and highly logical individuals who I now suspect belong on the spectrum. I’m thinking about it, actually, and it seems that they understood quite often the mechanics of formal sociality but little in the way of colloquialisms and less in terms of subtle innuendo. Perhaps that’s largely a product of compensation, as per having been more impressed on and expected of those particular social graces, which well would save them from a diagnosis but for all of the wrong reasons.
Cliff
Cliff said, “Thinking about it, actually, I spent a lot of time in high school arguing about various aspects of philosophy with two identical female twins. They were extremely direct, socially distinct, and highly logical individuals who I now suspect belong on the spectrum. I’m thinking about it, actually, and it seems that they understood quite often the mechanics of formal sociality but little in the way of colloquialisms and less in terms of subtle innuendo. Perhaps that’s largely a product of compensation, as per having been more impressed on and expected of those particular social graces, which well would save them from a diagnosis but for all of the wrong reasons.”
Exactly. Well said, and I love this description: “They were extremely direct, socially distinct, and highly logical individuals.” Nicely put.
Matthew, you said, “Life might have been different [for me if I had been male] but I can’t agree that it would have been necessarily any easier.” Please rest assured I completely agree with everything you said!
You’re at the mercy of the reporter when you give an interview like I did, and (it being her job) she cherry-picked a few short phrases out of a long and much wider-ranging interview. There are a number of successful men with autistic tendencies in my extended family, and I was talking about what might have have become of me if I had been a boy brought up in the same middle-class intellectual circumstances.
Jonathon (first comment) responded to Bridget Orr’s statement that “four times as many boys have [autism]” by questioning why “similar ratios have been found in other developmental disabilities such as attention deficit disorder, dyslexia and stuttering in which the socialization issues are irrelevant”.
The one-in-four figure is a prediction based on genetics. Here in the UK we actually have no idea how many people of either gender are diagnosed with autism – the figures do not yet exist. But in Australia the figure is about one girl diagnosed per ten boys, i.e. a lot fewer than would be expected if the ratio were the same as for ADHD etc. This suggests that many girls and women are indeed being missed.
Further to Matthew’s comment, of course success can be measured in different ways. As he correctly says, I have two wonderful daughters. When I look at them, how can I possibly claim that my life has not been successful?
It’s a feminist issue, even if your autistic child is a boy. As parents’ issues are feminist issues.
I think it’s not that a female child with autism will have worse treatment, but she might end up with less treatment – its actually more socially acceptable for a girl to be sensitive or dramatic, though if one is considered so she tends to be taken less seriously (this is a problem – stereotypically feminine traits are discounted – women are expected to suppress them in order to be taken seriously).
I think maybe because the behaviors are more socially acceptable in girls, and also because they are less likely to be exhibited in an aggressive manner in girls, because of the way our society brings girls up, they are less likely to be noticed.
While women are stereotypically social, no one has a problem with the sweet, shy girl, but the sweet, shy boy is ostracized. So the fact that the girl isn’t just ’shy’ goes unnoticed while the boy gets services.
There’s your feminist issue.
Also for those bothered by the label, ‘emotional disturbed’ or ‘emotional impairment’ is used to provide services to a child. My daughter has issues, but not a diagnosis (she doesn’t fall on the spectrum, either – it’s probably a combo of anxiety and depression) so emotional impairment gets her the services she needs. However her school is so, so, so much more positive about it than I’ve heard other schools are.
I think it may be possible more girls go undiagnosed (specifically with Aspergers maybe, Tony Atwood has written some interesting things about girls and their presentation), but I can’t say for sure. Our daughter presented the same way I imagine a boy would. Obviously, she is very much a girl in many respects. But, with regard to “symptoms,” I don’t think sex played a factor.
Also, I see my daughter with her classmates (she is one of 2 girls, the rest are all boys). They are all different in their own ways, yet very similar. I don’t see the girls as appearing so unique. When I speak to the boy students’ parents, we have very much in common. So, I don’t see this line between boy & girl autistics.
I will say, my youngest having an older (very dramatic and animated) sister may help her social characteristics. Outside of our house, she is nearly nonverbal, does not approach others, etc. (=still has major social issues). However, inside our house, she will play (to some extent) with her sister. She also can mimic her sister perfectly–tone and body movement, all of it. In those moments, where she *is* her sister, it’s hard to “find” her autism, if you will. Again, those are just passing moments–5 seconds here and there. But, if she didn’t have a sibling, those moments would not exist at all. Likewise, if she had a brother, what would those motions look/sound like? Perhaps in certain settings, an autistic girl would appear differently, even *less* autistic than her male counterpart? Are girls able to pick up on social cues better?
My older daughter definitely has some Aspie characteristics. She also is gifted, has some sensory issues, needs extra help focusing, and is “sensitive.” My husband & I also have some Aspie traits, both of us classified as “gifted” as children. I often say that there is a light shade of violet between the autism spectrum and gifted children–lots of similarities. I will also add–I was dx with ADD as a teen. Prior to that, I’d be accused of being a “dreamer.” Perhaps in that respect, sex did play a role? Who knows.
Ultimately, I feel strongly that if your child–boy or girl–is autistic and they are in need of services, a good physician will properly diagnose them. Wow this was long. Time for bed.
I didn’t get my diagnosis of Aspergers until I was 31 and whilst my mum has told me that she and dad always knew I was different and that my dad, teachers, paediatricians all recognised I was different and wanted me assessed, a combination of my passivity and my mum’s deliberate lies about me (she has admitted this to me and assured me she didn’t want me labelled and judged) ensured that I didn’t get a diagnosis until later. When I did go to get assessed I had absolutely no problems in getting a diagnosis, was told it was very clear I was on the spectrum, which came as a relief after I’d been fretting it was all in my mind.
Now, I have obsessions and sensory issues and difficulties in interacting with other people and with picking up on emotions and body language, but there are some social differences in how I present as opposed to how some other people with Aspergers present, which tie in very well with Tony Attwood’s description. Incidentally TA needs to re -examine his erroneous assumption that girls with Aspergers are mothered and protected by other girls in school. I’m afraid this is mostly bollocks. Teenage girls when faced with another teenage girl who presents as immature, uninterested in stereotypical teenage trends, with significant difficulties in interacting, can be vicious little so and sos. By giving the view that the girl who’s Aspergers will be supported and gently guided through the social niceties, it gives the impression that the girl will have no real difficulties and just feel a bit different inside.
The best way I can have of explaining my social differences is by comparing myself with my dad, who is not on the spectrum but who does come quite close to it.
I can say the nice things to people. I can offer metaphorical hugs and, whilst this certaintly wasn’t always the case, I can now mention one aspect of something in a favourable light, even if the whole thing isn’t to my liking. Or I can be straighter and say “it’s not to my taste” rather than “that’s rubbish”.
But where I fall down, besides my difficulties in intiating and expressing myself, is through omission. If someone asks me a direct question about themselves, or if they directly say they’re upset, I can give them sympathy or an answer that hopefully won’t come across as rude. However, I will frequently leave a person in mid conversation, walking off or I’ll switch off mid conversation and find myself getting distracted by some tiny thing in front of me. Or I’ll forget to reciprocate the “and how are you?” I’ll forget to ask people things about themselves, or realise to check after them. I won’t phone up someone for a chat. I rarely visit people. I can take friendships off line as far as “friendly work colleague who you don’t mix with at lunchtime and you don’t contact after work” and that’s it.
Now, my dad knows that this failure to maintain friendships, or to remember what needs doing, is something that can cause problems. I can remember him seriously berating me at the age of 15 when I left a slightly older lass standing in the porch whilst I just wandered off (although I did remember to say the word “bye” as I turned my back on her ). Whereas I missed so many things going on that I was rarely aware of anything affecting other people.
But the funny thing with my dad, is that whilst he knew all these social niceties, he often displayed a significant lack of tact and understanding when expressing his views or opinions. To my dad, it did not always occur to him that others could be hurt by what he said. He could say some vicious things that, in retrospect he did not realise could have been worded a lot better. Things like asking my older sister (who was one of only four to be entered in her class for the 11 + ) why she wasn’t as clever as the six month younger son of my mum’s friend. Or telling myself when my lunch box got deliberately hidden that people must think I was stupid. Or saying again to my elder sister, when she went to hold his hand at the age of 11 or 12, very tersely “no, you’re too old”. And myself, who would miss out on noticing my mum’s extreme exhaustion, who would not notice when others stared at my hand flapping, would think “that’s not nice” and resolve not to act like that towards others.
The feminist issue is very clear to me after a conversation (one of many rehashing) with my mother. I think I quite likely have Asperger’s, after about two years of research, as I meet all but the impairment criteria. I’m 23 and stable–I don’t need a diagnosis, and because of the invisibility of autism in women and the stereotypes, I’m afraid to get one.
My mother maintains that I am a hypochondriac and has some frankly revisionist ideas about my childhood. Last time I brought up the possibility of my being on the spectrum, she told me flat out that I was hysterical (sound familiar?). Additionally, had she know about autism when my brother and I were small children, she’d have had him tested because he spoke late. He was within the range of average development, and I was a chatterbox who understood his baby babble and was more than happy to give a translation. He is, as far as I can guess, NT. Despite my documented social impairments and difficulties with my peers, she would never have considered getting a diagnosis for me. When I was 16 and had panic attacks because I was so overstimulated trying to drive a car and listen to instructions, I was slapped with an anxiety disorder diagnosis and medicated.
I love her, but her revisionist ideas about my childhood are probably worse than the actual time was, just because she feels that she has to reimagine it.
@Patience, that is really interesting—-I have some relatives who don’t have a diagnosis but who I think have Asperger’s; efforts to bring this up with other family members have met with no response and silence. But I’m glad to get a conversation going…..
I can’t remember if I’ve mentioned it before, but my mom has a cousin (2nd cousin? I’m not quite sure what degree of relation she is) who is around her age, with classic autism and a savant skill. I’m really surprised he wasn’t institutionalized, now that I think about it, because he’d be in his mid 50s to early 60s now. Knowing of him, and nothing else except what she hears on the news, is the extent of her autism awarness. I think that helps feed into her belief that, because I’m articulate and smart, the hand-clenching, isolation-seeking, and other autisitc-like behaviours don’t count.
I’m still anxious and reluctant to declare myself being on the spectrum, even in an online context and using a pseudonym, stemming from the same base of “well, I can’t be, I’m a girl and spoke early without any loss later on.” I can objectively look and see that I meet criteria without wanting to claim them all the time. There’s no real stigma attached to saying one has autistic-like traits, or is part of a Broad Autisitc Phenotype, but there’s some stigma in claiming the label. As an adult, it’s hard to make that jump and claim it. If autism does present differently in women (and the most common signs are percieved differently in women)–and the autistic women I’ve known personally, offline, seems to encourage the line of thinking for me–then I’m not sure we will ever see a number parity among adult autisitcs. There is a huge risk involved in being diagnosed as an adult if you are not struggling–a risk of discrimination at all levels (employment and social). I think adults undiagnosed but with ASD will only be diagnosed if they have a problem or perhaps if they have a child with ASD; logically, those of us without diagnosis who are doing fine aren’t going to seek diagnosis or even think about it. If accurate criteria for girls can be put forward that accounts for the social conditioning we are all put through (regardless of how well it seems to ‘take’), we might sometime see closer to equal numbers of boys and girls diagnosed as children.
I have a lot more thoughts, but not the means to outline them right now. I think it might be time to start a blog.
This is interesting! My daughter has had evaluations since she was 2 years old , 10 and now almost 12 years later they have diagnosed her with Aspergers disorder, ADHD. We have been treating her for the ADHD but I knew that that was not all there was! The doctors tried to steer me away from the last evaluation but I happened to read an article on the internet that a woman wrote about her 4 year old son and it was everything I had been telling the doctors but they seem to not listen. This womans son was diagnosed with Aspergers syndrome at age 2! At my last doctors visit I remember he told me that if I did find out she was Austic that it wouldn’t change anything! At that moment I knew that he did not understand that I was not looking for a cure but just more insite to the world my daugther is living in so I can be a better advocate for her!
I hate being said to have a ‘male brain’. Only intersexed women and FTM’s could be accurately described that way. I am a woman, I feel like a woman, my body is female, and I’m just as different from most men cognitively as from most women!
Wow – Patience & Emily, its amazing how similar parts of our stories are. I spent pretty much all of my childhood hearing from my mom what a freak I was because I didn’t have friends, and did the whole special ed / eval thing (my “label” was dyslexic with the inability to socialize); she also said the same thing about the hypocondria, along with that I must be lying all the time, and that I was ultra picky. She was also kind enough to tell the rest of the family the same thing.. suffice it to say I was out on my own by 15.
It wasn’t until my son was born, who is the biggest cutie, but somewhat quirky kid, that I started doing research (not wanting him to go through what I did, and being able to empathise with a lot of his complaints), and realised that him and I both likely have Aspergers.. both of us have SIDs varients (his has extreme tactile issues, along with sound, and light; mine are sound, tactile, and vertical orientation (which I always was told was just inner ear damage, but my hearing is off the chart) ); both have issues with identifying social ques; both are very routine oriented (grin – anal would be better – he’s a little nag even about things like how far back to turn on the signal light, and did I mention he’s only 4?).
Of course, like the other post about the joke pill, I have a hard time getting help for him, since everyone thinks he’s such a polite little boy, to which I want to answer that even good kids can have issues. And 90% of his manners come from his obsession with rules, and “the rules say that we say please and thank-you”, so he does! (smile)
To finally prove my point to one of his aunts, I had her play “cars” with him – in his world that means lining 100 or so cars up in a perfectly straight line. I had her move 1 car midline 1/8 inch away from the one ahead while he was out of the room, which he immediately noticed, went “hmpht!”, and moved 70 cars forward 1/8inch to fix the line. And he kept “fixing” the line for over 2 hrs!
He’s just the greatest kid in the world, and its just so hard for me to watch him get into “trouble” with others because he is highly functioning, but yet still challenged…
Sorry about the rant, but this is the first time I’ve found a community who has any idea of what its been like..