Learning, as an adult woman, you have autism
April 3, 2017 2:05 PM   Subscribe

"In the old days we always thought that autism was very much a male condition," she said. "What we are now starting to realize is that it's not quite as simple as that, and that there are -- and always have been -- girls and women who are on the autism spectrum, but they present differently.
posted by bq (51 comments total) 56 users marked this as a favorite
It's interesting to read about the experience of Laura James, but as someone with a, um, friend who loses it over tags in clothing, I'd be curious to learn more about how autism presents in girls and women. Like how do you know when you should talk to your doctor?
posted by medusa at 3:31 PM on April 3, 2017 [5 favorites]

here is a book on the subject of autism and gender for anyone interested. hoping to get around to reading it this summer myself
posted by LeviQayin at 3:55 PM on April 3, 2017 [2 favorites]

Autism spectrum disorders and how they play out with gender, language barriers, co-morbid conditions and the like are fascinating. I don't work in the field but I do work with (mostly) young people with a broad spectrum of ability and impairment.

I would give an awful lot to know how to better serve the families I see who move to my city so their children might learn english while Dad (usually) continues to work in Asia visiting twice a year and the primary english speaker in the household is 10. And.... a little odd. And has to interpret their own disciplinary intervention with their guardian (usually Mom).

And what do I know? I'm just a coach who's seen all kinds of autistic kids but I think your child (displaced in geography, culture & language) would do well to have an adult advocate on their behalf for services, diagnostic support & (probably) intervention at school. Or not. I'm just a guy who sees a lot of kids and a lot of each of them.

It's particularly troubling at the portions of the spectrum where kids mostly 'pass'. Same with subclinical physical impairments.

These are relatively nuanced points but they can be explained (even when there's no easily accessible solution) relatively quickly. The gendered ones though, phew. I mean dear lord. If I had a nickel for every time I read an abstract that described a finding that looked interesting but the methodology is rife with selection bias, survivor bias, small sample sizes and refers to prior work with models developed with prevalent gender bias.

As a lay person with some grounding in statistics a little piece of me dies when it's pointed out that even human studies are impacted by gender bias in the animal models that produced the pool of drugs available to test in the first place. Let alone easily google-able studies in pervasive gender bias in something as presumably rational as evidence based medicine. When it comes to gender you can't even begin having the argument because the issue is so large and understated that it's simply part of the background; fish (even the loquacious ones) still have no word for water.

On top of it all autism is something we don't hardly begin to understand and it seems likely that, generations down the road, it will be understood to be a complex of interacting issues. Currently it looks like we don't even know that there's more than one way to get pneumonia and, hey, if you're female you'll probably die because you've been misdiagnosed with hysteria.


That being said: medusa tactile sensitivity is totally a thing and, while it's often a marker for autism spectrum disorders, can be co-morbid with other things. Personally I hadn't heard anything about it (or Tourettes/OCD) until I was in university and seriously considering killing myself. I'm not cured but having a toolbox full of coping skills to deal with my intrusive thoughts, tactile issues and sound hypersensitivities means I get to live. And mostly enjoy it. If you're concerned by irrational & out0of-proportion responses that you have difficulty controlling then it's time to see someone about it. Just don't expect a quick resolution; do expect to document and justify your concern. It's a journey well worth taking.

At least that's my $0.02. But I'm just a guy who sees a lot; from one layperson to another.
posted by mce at 4:52 PM on April 3, 2017 [15 favorites]

I remember being about ~13 or 14, (10 years ago), reading about autism/aspergers on wikipedia, and thinking that it sounded like how I wanted to be, how an idealized version of myself might be. And I got to a line, which now reads "For example, a child might memorize camera model numbers while caring little about photography", and said "Yeah, but that's not me at all".

(ignoring the lists! so many lists! i had made and would make: all the different kinds of cat breeds, all the different kinds of horse bridles and bits, what is every single object that I might need in my kitchen, every type of cleaning supply I might need, all the traits of all the superheroes of the cartoons I watched, ... To my partner's (mild) disappointment, camera information falls out of my head immediately, though.)

It seems I had been diagnosed at 8 or so but didn't know about it; re-diagnosed around 20, but didn't accept it at the time because none of the depictions really seemed to parallel my experience. I saw this chart linked on metafilter before, though I can't find the link on metafilter itself at the moment, which did line up with my experience, though.

As an addendum, it's beginning to appear that a lot of not/not-strictly female people have autism that looks like that, too, and theirs often gets missed as well. (I'm myself transgender, though I and nearly everyone around me thought I was female for the first 20 years of my life; a lot of my trans friends, on all vectors, have autism that displays like this).
posted by you could feel the sky at 5:52 PM on April 3, 2017 [11 favorites]

I've kind of wondered about myself, because I've been diagnosed with several things that seem autism-adjacent. But I also can't really think of any benefit that I'd derive from being labeled as having autism as an adult. It might have been useful when I was a kid, because I think I could have stood to have some help figuring out how to pass as normal, but at this point I pretty much do pass as normal, so what would it do for me now?
posted by ArbitraryAndCapricious at 5:56 PM on April 3, 2017 [9 favorites]

It might have been useful when I was a kid, because I think I could have stood to have some help figuring out how to pass as normal, but at this point I pretty much do pass as normal, so what would it do for me now?

If it's any comfort, almost everyone who wishes they were diagnosed as a child is projecting the support and information that's available today back into the past.

I was diagnosed in my teens, close to twenty years ago. Looking back, it was perhaps one of the shittier things that's happened to me -- telling a teenage girl that she's irrevocably different is almost never helpful. But what made it worse was that there really weren't that many resources out there for people functioning at a higher intellectual level, and there really still aren't. The ones that are out there are *still* insulting, and the paucity of real role models doesn't help. (I'm elitist. If you don't know who the person is -- or, at least, have a reason for knowing who the person is -- prior to finding out they're autistic, they probably shouldn't be considered a role model.)

If being diagnosed did anything for me (after I stopped feeling sorry for myself), it made me aware that I needed to seek out resources to help me improve my social skills. And I did. But none of those resources came out of the autistic community.

I do wish the article hadn't launched into the "having ASD is fine!" narrative the way it did. When you're a woman, having ASD isn't fine. The article touches on that a bit, but I think it elides a lot of the real issues. Having ASD has negatively impacted every single relationship I've been in. It's hurt my career and job prospects. It's hurt my social connections as well. And, to the degree that it hasn't hurt me, it hasn't hurt me because I've learned to consciously compensate for things everyone else can do unconsciously. I think young men might have hope that these things will change for them. I can't.

I'd really rather not have ASD. I'd rather not have ASD not because I can't imagine a world in which ASD isn't a disability but because I can't imagine a world in which having ASD doesn't make it harder to be female.
posted by steady-state strawberry at 6:24 PM on April 3, 2017 [21 favorites]

Also, ages ago, someone commented that they learned to read body language by referencing Television Without Pity's recaps. If you're still commenting, that's awesome!
posted by steady-state strawberry at 6:25 PM on April 3, 2017 [1 favorite]

I can check a lot of the ticky-boxes and I've done the online self-tests (and coerced a friend who has known me for more than thirty years to do the online self-test FOR me, like as if she were me, without telling her what answers I picked because of course I am not entirely capable of being all the way honest on a four-choice always, sometimes, rarely, never sort of a thing because I can tell ahead of time which questions flag for aspie and which flag for normal) and the results for those sorts of self-assessments plop me firmly in the asperger's group even when I'm being very benefit-of-the-doubt about my answers.

But I'm over 45, have an actual Real Job, live independently, and can't see the point of signing up for medication or talk therapy aimed at fixing me. I am not going to get any more fixed than I currently am.

These days I more-or-less pass as normal and have arranged my life to get through the parts I don't like via assorted coping strategies. (Examples: "grocery shop after 6 PM, midweek to avoid crowds, produce delivery days at my grocery are T and R, so one of those days is best" and "If you find a turtleneck that is non-itchy and not plastic-y and has wrist cuffs you can live with, buy one in every color" and "It's ok to jam one thumbnail under the other to distract yourself from the amount of physical proximity involved in dental care even if it weirds out the dental tech.")
posted by which_chick at 7:02 PM on April 3, 2017 [12 favorites]

Laura remembers doing just that. She's also convinced that social conditioning is a big factor in the differences between boys and girls with autism. "Boys are allowed to be louder and more confrontational, more challenging, whereas girls are taught to be nice, quiet and polite." Girls are more likely to internalize their difficulties, she thinks, which then go unnoticed.
I agree strongly with Laura about the social conditioning, and not just in terms of politeness and confrontation. Girls are so much more intensely socialized than boys to notice subtle cues in behavior, tone, facial expression, etc. This intense socialization functions as a sort of constant informal occupational therapy that suffices, if painfully, to get many girls with ASD to some sort of functional adulthood without formal intervention. Some sort of formal intervention, where people lay out explicitly just what they hell you're expected to do with bonus points for rules that do not perpetuate gendered double standards, would probably have been a real help for me from K-8 though.

For example, I learned more about being ladylike from the charm school scene in A League of Their Own than from years of social opprobrium. On the other hand, the treatment of Marla Hooch was strong evidence that not being conventionally attractive is a permanent handicap on being considered appropriately female, so I also learned that, for the most part, fuck it.
posted by palindromic at 7:16 PM on April 3, 2017 [17 favorites]

I wrote about this for Scientific American Mind a while back.

It was such a revelation for me personally to learn about Asperger's because it was the one thing that explained all my weirdness... reading at 3, oversensitivity to sound, oversensitivity to texture, to tastes, OCD-ish behaviors, overly literal, obsessive interests, social cluelessness, inability to deal with crowds..

I dealt with it by becoming addicted to cocaine and heroin, which I don't recommend. And I thought I was a rare exception, but then I found out that actually, if you are on the spectrum and have normal or above IQ, you have double the risk of addictions. Which I wrote about, also
posted by Maias at 7:18 PM on April 3, 2017 [40 favorites]


oh, shit.
posted by dogheart at 7:21 PM on April 3, 2017 [6 favorites]

by which i mean, of course, so much makes sense now. goddamnit. i guess this is yet another thing wrong with me, along with the bipolar that i already knew about. in exactly how many ways am i broken? i guess at least i am pretty sure about what, precisely, is wrong with me. i hate this. thank you for posting it.
posted by dogheart at 7:29 PM on April 3, 2017 [1 favorite]

not broken!!!! wired differently, in ways that surely do cause issues and can be disabling, but also, for many, provide great joy and creativity.

at least for me, I prefer to look at it via the idea of neurodiversity: we're all wired in unique ways and a type of wiring that might be completely disadvantageous in one setting may be completely superior in another. the thing is to find the setting that's best for you.

which, is often hard.
posted by Maias at 8:26 PM on April 3, 2017 [17 favorites]

I too am an adult female person who is super curious about the question of when to get a diagnosis! I have almost every single symptom of an ASD (including a super-annoying GI issue that almost never presents in non-autistic patients) and I've always suspected, especially since I found out one of my siblings has an honest-to-goodness diagnosis, but I kind of feel like having one would not make any of the symptoms better, just give me a sense of relief and a community. Is it worth the $$/time/stress just for that? I ask myself constantly.
posted by capricorn at 8:35 PM on April 3, 2017 [3 favorites]

you could feel the sky and others...

so, I'm looking at that chart and reading the articles, and I'm wondering what's the difference between high-functioning adult autism and strong introversion with a side of not caring about social expectations? I mean, I guess I wonder where the disability part comes into it for adults who have weathered the educational gauntlet successfully, if not well. I hope this isn't an insulting question by the way - it isn't meant to be.
posted by dness2 at 8:40 PM on April 3, 2017 [1 favorite]

in exactly how many ways am i broken?

For me it was .... not the opposite exactly but I felt broken for quite a long time. Learning that there's a word for the way I am (a couple of them actually) was a relief. It meant I wasn't the only one who struggled the way I did. There were people who'd understand without me having to lay everything out only to be told it was nothing or that I was exaggerating things.

At least these days when I feel broken (which I do still with some regularity), I know there's people I can reach out to and my coping mechanisms shouldn't be a source of guilt. It's rough but it's not as rough.
posted by sparkletone at 8:51 PM on April 3, 2017 [3 favorites]

I'm another adult woman who's self-diagnosed as "neuro-atypical with ASD traits". I don't care about having a label, but having autism spectrum disorders as a possibility helps me figure out where to look and how to troubleshoot if I'm having a hard time coping with something. For me, what it comes down to is that I no longer expect my brain to step in and do anything related to socializing instinctively. Everything about interacting with humans requires me to develop explicit habits. Now that I know that and have mostly stopped resenting it, things go better for me. I had many years of "whyyyy does this all seem so natural to everyone else?!?!?" to get here though.

The good news is it's never been easier to work around autism. There are so many technological tools now that help us cheat.
posted by potrzebie at 9:10 PM on April 3, 2017 [7 favorites]

not broken!!!! wired differently, in ways that surely do cause issues and can be disabling, but also, for many, provide great joy and creativity.

If that's your boat, then float it.

My attitude is, it sucks, I wish things were different and I weren't broken. I also wish my back stopped hurting (and I wasn't broken), that my knee and hip didn't randomly feel weird, that I had better teeth, and that my hair wasn't turning white.

(Oh, the bipolar bit sucks too. Even though it's under control, I wish I didn't have the vague fear of waking up one morning to find out my body has decided to reject my skin.)

It's okay to not be okay with things. I really wish that were a narrative that we found in our culture. A lot of people wish things were different. (*) And being willing to accept that things suck but they can't change is a lot of what life is about.

(*) I have an uncle who went vegan in his fifties for health reasons. He cooks fantastic vegan food. He still misses meat. If you told him the world was ending tomorrow, he'd go to a steakhouse. I have a friend with celiacs who would head to a bakery, and a friend with diabetes who would -- well, head to a bakery. They all live their lives perfectly well, and there are plenty of people who give up meat or gluten or sweets on purpose, but that doesn't mean they don't miss what they can't have. I'm not sure why that narrative can't be applied elsewhere.
posted by steady-state strawberry at 9:24 PM on April 3, 2017 [7 favorites]

Camouflaging autism.
posted by Segundus at 9:55 PM on April 3, 2017 [5 favorites]

My son is autistic (diagnosed early and we're blessed to have access to fantastic resources, I'm extremely grateful) and it always struck me, even when he was extremely young, how similar he was to me. My dad laughs whenever he's over because Reyturner jr. does things exactly as I would do them at that age.

Finally, in the last couple of weeks, I started looking into adult diagnosed autism and, going through the tests and articles, I was struck by how many things I completely take for granted were signs.

I can't make out conversations in crowed rooms.

I study people's hair.

I have unlimited energy for things I'm interested in, to the point of manic obsession at times, and no ability to redirect it at other things.

I usually rely on context to work out if people are teasing me.

I get exhausted in social gatherings and have to hide in the bathroom to recharge every couple of hours.

I have difficulty thinking about things unless I have a clear picture of them in my mind.

I have no ability to muster any enthusiasm for office politics or optics and tend to languish in roles below my abilities (on paper).

Figuring out I'm likely on the spectrum has made a lot of things click into place for me. But... I'm not entirely sure what to do with that information...

posted by Reyturner at 10:39 PM on April 3, 2017 [15 favorites]

Also, this is a stereotype but in my case it really turned out to be a game changer: giving birth to and parenting a small baby REALLY kickstarted some empathy for me. I am not normal or anything now, but I feel my days of bitching about my lot in life on Wrong Planet are behind me and part of that is definitely that the hormone wringer of pregnancy and new motherhood rewrote broad swaths of my brain from basically scratch. So...y'know...if you're an autistic or maybe-autistic person who can get pregnant and you want to do some pretty interesting experiments with your brain...

OK it's probably not worth it if you weren't planning to have kids anyway, BUT at least be forewarned that it can be pretty deeply transformative if your empathy game was not so hot before.
posted by potrzebie at 10:58 PM on April 3, 2017 [4 favorites]

so, I'm looking at that chart and reading the articles, and I'm wondering what's the difference between high-functioning adult autism and strong introversion with a side of not caring about social expectations? I mean, I guess I wonder where the disability part comes into it for adults who have weathered the educational gauntlet successfully, if not well. I hope this isn't an insulting question by the way - it isn't meant to be.

With the caveat that I didn't weather the educational gauntlet (dropped out halfway through university, unemployed), and with the caveat that I'm one person and not many people so I can't be sure I'm talking about autism traits rather than me-specific traits, and with the caveat that I'm going to go into a bunch of tangents and probably not answer the question because I've been packing up my apartment all day...

With regard to "how is it different from introverts who don't care about social expectations"? at least some of it is, for me, sour grapes, I think?: I don't know what the social rules are, I have a hard time intuitively understanding them, and so to an extent I've given up. When I was younger, middle/upper school, I wasn't aware that I was missing social norms (I remember wearing a fishing vest to school daily because I liked having all the pockets...).

I had the good mis/fortunate in university to go to school with a bunch of damn nerds, so despite crashing academically, I had a lot of friends. I really enjoyed hosting events? I was bad at the Actually Socializing part, but I liked having a bunch of people in my apartment who were having a good time. Which I guess is part of the difference: autism doesn't seem to necessitate being introverted. So despite the fact that I had a hard time modelling people, and so being around (most) people for a long time is exhausting, I'd have a dozen people over every weekend for dinner and movies and board games.

I'm constantly misreading people's emotional states: instead of being able to intuitively "know"/effectively predict how people are feeling, I have to do it by hand: they look like this, they're sounding like this, this just happened so maybe they're feeling like this? fortunately I live with people who I can just ask if I'm reading their emotions right. When I'm tired or stressed or very upset, other people have a hard time reading my emotional state; I often have to remember to do things that people think of as natural accompaniments. Text-based conversational mediums are preferable to me (irc, facebook chat, twitter, etc) to verbal conversations or phone calls (the literal worst).

My partner does a lot of talking for me in "novel" social situations, like going to a new restaurant. I often can't get the words out that I want to use, on account of running all the social judgments manually. I don't seem to pick up on social norms quickly. I overapply the rules/guidelines I do know, often to everyone's detriment. ("Don't talk about yourself too much, it's bragging" has led to me, unknowingly and unintentionally, being very evasive or shutting down conversations or leading people into talking about things they (or I!) don't want to talk about.

I think a lot of things that divide into low and high functioning autism would put me in the high functioning group: I can talk! People say I'm funny! Apparently I'm good at abstract math!, though I dropped out. I can cook and bake and keep a house clean, I've been in relationships and I'm engaged to my partner that I live with. It's funny, because I'm incapable of many Functioning Adult responsibilities, like "eating three meals a day", "consistently doing things I like doing for fun", "showering regularly". I can plan for us a vacation, dealing with flights, hotels, what to do each day; I also sometimes cry in frustration because I can't figure out what all I need to do to go to bed. Theoretically I could have/hold a normal (?) job, as long as it was fine that literally everything else would go down the drain.

I think this is to say: high functioning autism doesn't necessarily mean introverted with disregard for social norms; introverted with disregard for social norms doesn't necessarily mean high functioning autism; someone could probably be both an introvert with disregard for social norms and autistic. (I mean, to be clear, I think social norms in abstract are very useful tools! I just don't know them.)

My partner points out that the succinct summary is: it's not that I'm/other autistic people are disregarding social norms because we knew what they were and thought they were bad or wanted to do other things, but rather that I/we didn't notice them or know what they were or why they were in the first place.
posted by you could feel the sky at 11:18 PM on April 3, 2017 [15 favorites]

So I saw the chart, and was like "Ehhhh I fit almost all of those but like 3 of them, but that seems pretty on course for being me. Doesn't seem all that special though?" I then googled and found this list, and kind of freaked out because this basically reads like a checklist of almost everything in my life and my personality. Like, that was really scary, how did they know?

Since I was a young child, I was completely confused by social interactions and have basically tried to study human interactions forever. To this day, I still am so grateful that I learned how to activate the toolset of listening and asking questions and being curious about people, because that's helped me gain a lot of really close relationships with friends and people. I read AskMetafilter for fun, because I get so much quality anecdotal evidence for healthy relationships, and store it away as a database and toolset in my head. And one of the worst summers I ever had during college, I spent basically two months organizing a 1TB fancam archive of my favorite boy band through date, location, member, and even outfit, to escape my feelings since I was underneath such stress. And then I lost it all since I didn't prepare a backup, sigh. I also spent like three months of intensive practice learning how to drive a car...

I'm seeking out an ADHD diagnosis right now, but I have read recent research that ADHD and autism may be co-morbid. So this is going to be really interesting...

I don't really know how to feel about this, since I feel pretty okay. But I've always felt most comfortable being kind of eccentric and emotionally honest? I'm just not sure what this is meant to do for me, and I hesitate taking on a label or a diagnosis if I'm not really clear on how it's had a positive or negative impact on me.
posted by yueliang at 12:36 AM on April 4, 2017 [6 favorites]


This is so weird to read, especially in the light of a recent breakup I had. Huh.
posted by yueliang at 1:26 AM on April 4, 2017

As a probably-autistic-spectrum AFAB person myself, I feel like whether any of this stuff constitutes being "broken" is just incredibly heavily dependent on how it presents in any given individual AND on their social and cultural context AND on how they feel about the interaction between those two things. So some folks are going to feel "broken", some folks feel like "not very functional without lots of coping strategies", some folks will feel like part of a happy neurodiverse community, some folks feel like their non-neurotypical traits are an active advantage in their life. And it's fine to choose whichever one of these things fits you personally at any given time.
posted by emilyw at 2:52 AM on April 4, 2017 [9 favorites]

me on MeFi: "5. Analyzes existence, the meaning of life, and everything, continually ; 6. Serious and matter-of-fact in nature".

I taught myself how to read before I turned two. I still remember it: I noticed that the yellow squiggles on the green rectangles with rounded corners were things my parents looked at while driving. I asked them why they looked away from the road. "We're reading the road signs." Oh. Road signs. What's "reading?" Ohhh... the squiggles. Clearly the next question I had was: "what do the signs say?" They started reading them to me. "Springfield 1 mile, Eugene 6 miles". Okay, so the long squiggle was Springfield and the shorter one was Eugene. "Mom, does that sign say Eugene?" - "No, it says Thurston." - "How can you tell the difference?" - "The letters are different." - "What are letters?"

My mother had to start teaching me to read at age two because I had dug into books and was getting all mixed up. I was two years ahead by the time I hit first grade. Twenty years later I ended up with a Masters in comparative literature in which I read works in several different languages.
posted by fraula at 3:04 AM on April 4, 2017 [3 favorites]

omigod also this, so much this: "CBT may cause increased feelings of inadequacy."
CBT so does not work for me it is not even funny.
posted by fraula at 3:11 AM on April 4, 2017 [7 favorites]

Omg. Camouflaging. There is a word for the self-checks I do in social situations where it is important for me to seem 'normal'. Am I making eye contact in appropriate amounts? Does the other person exhibit signs of boredom? What is their facial expression? What is my facial expression? Am I appropriate for the occasion (eg: not ok to discuss how viewings are so. damn. weird. what with the dead body in a box and all and Not Ok to LOOK like you're thinking about how weird it is to see a dead body and everyone just standing around making small talk about how sad it is, which yes it is very sad, but still. Dead body.)? Do they want to talk? How long have I been talking about x? Is it time for me to shut up and let the other person talk? (Probably. Almost certainly.) Are we standing an OK distance apart? (This is stuff I have to do on a conscious level during conversation. Like, I work at it. It's exhausting and also frustrating because even though I try really hard at faking it I feel like people can *tell* it's not "real" and natural and some days I'm all screw it not gonna put out the effort today. But there's a word for it. Cool.)
posted by which_chick at 4:09 AM on April 4, 2017 [16 favorites]

I realised in the last year or so that there's a little commentary running in the back of my head during all social interactions. That little voice is my...coach? instruction manual? moderator? It says, in various forms, things like the following, all the time:

* OK, you've spoken enough about yourself. It's time to ask her a question. Maybe about her holiday.
* Oops, you interrupted. Stop! Wait! Let her go on...no? OK, you can talk now.
* That was good eye contact. Now look at her forehead so it's not weird. Is it weird? I think it's weird. Maybe take a sip of your coffee. Now look back at her and show her you're listening. Nod. Smile.
* I know you had a sudden great idea, but you didn't need to blurt it out in the middle of something else. Now you look like a dog after a squirrel. Great idea though, let's store that one for later.
* You've talked for a couple of minutes. Maybe you should talk to someone else? Do you feel like it? No? OK, don't.

And I'm so used to that voice that I don't notice it's there most of the time. Eye contact is always hard for me, so that's when I tend to hear it most.

FWIW, I was an early reader too, and very recently diagnosed with ADHD. It's still new and novel and so is therapy, so I'm still learning about the tools I can put in my toolbox. I think CBT is in my future, though.
posted by tracicle at 8:37 AM on April 4, 2017 [19 favorites]

PSA: many autistics consider the use of "functioning" labels to be harmful. This post has links to a number of essays about this: What’s Wrong With Functioning Labels? A Masterpost.

One suggestion, if it's really necessary to go into details, is to talk about the level of support a person needs instead.
posted by Lexica at 9:19 AM on April 4, 2017 [3 favorites]

I was diagnosed as autistic when I was seven, but I am not now. I'm not a different person, but I have made all the accommodations I intend to make at this point, and I'm not going to take on some additional 'special' status so people can pathologize me and cast me as the maladapted party in every disagreement.

I'm already female and get mansplained and treated as an unreliable narrator in the fields I have expertise in, and I am getting pretty old so I get 'splained by young women now as well. The idea of taking on some additional excuse for ignorant people to patronize me is pretty unappealing.

When I was a little kid, I think it was second grade, I had a teacher who fucking hated me. I was small for my age, plus almost a year younger than most of the rest of the class, so I was fairly timid at the time, and I didn't act up or cause any trouble at all, but she didn't like that I didn't look at her enough. I got perfect grades, too. I was in AP classes, and that point, I had not yet gotten a question wrong on an assignment or a test. So I wasn't a bad or disruptive student by any reasonable measure, but she had some impression that I was subtly judging her or something I guess, and would regularly send me to sit on a stool in the hallway for being 'disrespectful' because I was looking out the window or at my desk instead of making constant eye contact with her. She was clearly the maladapted person there, not me, but I took the hit anyway, and at the end of the year she put in to transfer me to the Special Ed class, which one of the administrators warned my parents was effectively a class of kids who bit and threw chairs, and she told them she was afraid I'd be seriously injured if I went there. They had to send me to a private school they could hardly afford just to keep me out of there.

That was an extreme example, and it's true there were skills and coping mechanisms I had to learn as a kid, but more often than not, it was about me learning to adapt to other people's totally irrational and unreasonable needs. And I've learned enough of those by now. I'm not going to make all the accommodations, and I'm not going to take on some sort of pathological status in order to get other people to be reasonable. I am not by default wrong or maladaptive. More often than not, it's other people who need the special accommodations.

I'm bothered by excessive lights and noises, but if I walk into a waiting room and there's a TV blaring in the corner, who is being unreasonable? Me, for being bothered by screaming talk shows and crappy sitcom laugh tracks, or the person who requires constant external stimulus at all times as 'background noise,' and expects public accommodation for that? Fuck no, that's ridiculous. My position is much more reasonable. If you need constant chatter everywhere you go, you should have to wear the headphones, not me. And no, you don't get to think you're a compassionate and 'tolerant' person making special accommodations for us poor deluded souls who are annoyed by your pathological, antisocial behaviors.

I still don't always get passive aggression and things like that, either, but IDGAF. I haven't given anyone reason to be afraid of confronting me if they have a gripe, so if they're resorting to passive aggression with me, they're being irrational and unreasonable. Maybe they're just kneejerk cowards, maybe their gripe is so ridiculous they know they couldn't actually defend it if they said it out loud. But if they can't be fucked to actually say what they mean, I can't be fucked to care what they think, so I choose to take people fairly literally. It's not that I don't know some of them are being hostile, but I'm not obligated to psychoanalyze every overly emotional rando to ensure that all of their sick burns land. I'm not the one with the pathology there either.

People's ideas of what is normal and what isn't are often completely nonsensical and even actively hostile to anyone who doesn't conform to them. There is no valid, defensible reason for many of those social norms, and there is no valid, defensible reason to pathologize or otherwise label those who don't conform to them. It just gives people one more excuse to be dismissive of others, and to excuse their own antisocial behaviors.
posted by ernielundquist at 9:50 AM on April 4, 2017 [14 favorites]

At this point I'm just confused about what high functioning autism actually is. It seems to encompass an enormous amount of often contradictory behaviours, especially in women and girls. How do you detangle autism from say, intense anxiety, or a history of severe child abuse, or giftedness, or just being kind of weird and different?

As I understand it, "autism" is not the name for a cause-of-symptoms, but more a name for a constellation of symptoms that seem to show up together that may or may not have a common cause. Analogously, I had bronchitis recently, and on looking into it, realized bronchitis was just a name for the symptom set "horrible cough that keeps on keepin' on", vs (for example) the flu, which is influenza virus and has a set of indicative symptoms, or legionnaire's disease, which is legionella bacteria and has a set of indicative symptoms.

My suspicion based on how other autistic people report being/feeling and how I feel/am is that there are multiple sources of autism, or at least some mediating factors. Like a bunch of autistic people report that their internal monologue isn't verbal, instead being images/sounds/sensations, which is completely foreign to me; my mind's eye is barely existent, and I only think in words.

But even so, there's definitely a cluster of people who have many more(if not all) of these traits than the rest of the population, that these traits are more strongly expressed in the cluster than in the rest of the population, that coping mechanisms (for lack of neutral term coming to mind) for these traits are more necessary for the people in this cluster than the rest of the population.

I think I'm trying to get at: on the less-obvious/less-affected/more-mediating-factors end, there could be people with anxiety/giftedness/weirdness caused by (the same thing that causes autism in the more-obviously-affected people), and it wouldn't be necessarily be very easy to tell it apart from anxiety/gifted/weirdness caused by other factors. It might be possible to tell it by what sort of treatment/coping mechanisms/aids/.... affect the anxiety/giftedness/weirdness?

(Apparent) introversion caused by not particularly wanting or needing to be around people often needs treatment in the form of ... not being around people often. But apparent introversion caused by "people are exhausting to model" needs support in forms like (nonexhaustive) explicitly stated social norms, people verbally sharing emotional state rather than relying on body language, etc.
posted by you could feel the sky at 10:16 AM on April 4, 2017 [5 favorites]

so, I'm looking at that chart and reading the articles, and I'm wondering what's the difference between high-functioning adult autism and strong introversion with a side of not caring about social expectations? I mean, I guess I wonder where the disability part comes into it for adults who have weathered the educational gauntlet successfully, if not well.

Not all people with ASD are introverts, some are actually very extroverted but lack the skills to interact well. Which can lead to, for example, going to a party because you really want to meet people and hang out but then talking much too quietly/loudly/end up monologueing about your special interest so that nobody will talk to you long, and then having a meltdown because the people you went there to see are all talking at the same time and the music's too loud.

And many people with ASD care about social expectations, they just can't figure out how to follow them. They would like to date successfully, and are interested in learning how, but struggle with making basic conversation, never mind flirting.

Now, let's use a "fictional" example:

A woman with ASD might care greatly about dressing appropriately but can't seem to figure out what business casual means. Of course, many neurotypical people can't understand business casual either, but our ASD office worker is beyond clueless and it causes her a lot of stress when she shows up to work wearing something she gets written up for.

For this same office worker, she might struggle with oversharing sensitive company information, because social communication is difficult and she didn't understand when she was told what the sensitivity level was...she has difficulty finishing tasks because the instructions are vague...

Also, restricted and repetitive interests are a part of the diagnosis too. So our worker might also have some trouble when she spends a lot of her work time on her personal project (rather than on Metafilter, ha) and someone catches on. And every conversation, including at meetings, comes around to her favorite topic. It impedes productivity, and in a way managers may notice.

Some of what makes this disability related is the degree to which it impairs our worker, when a neurotypical worker would come up with a work-around. If you rephrase your question as "what differentiates ADHD from normal disorganization and high-energy people? Why would that be a disability at work?" -- we can get the answer to that on AskMe-- and ASD is a developmental disability too. And because women's behavior (and dress) is so tightly policed, some things that might not be a problem for her male colleague, or even for her neurotypical female colleague who has a good understanding of office politics, become performance improvement plan difficulties for her.

Education is easy compared to the workplace. In school they give you grades and comments and there's a syllabus. My friend with ASD was once told by her manager to "pick up on the cues already." She literally couldn't.
posted by epanalepsis at 11:39 AM on April 4, 2017 [5 favorites]

I taught myself how to read before I turned two.

I was slightly older than two myself, and by the way, many people think this (hyperlexia) never occurs in people who aren't on the spectrum. Or so my Very Serious internet research tells me. :P
posted by capricorn at 12:01 PM on April 4, 2017 [1 favorite]

this has been useful to me in so many ways, I married a high functioning autist who can only maintain his professional career because of the intense comms activity i interpret, mediate and enable.

our daughter is probably mildly on the spectrum but that alone has caused her issues...

our son who is diagnosed prob because of his gender has far more help and practical support.

I feel such a failure to support my daughter largely because I was winging it even with my husband and son, the sources of info just did not apply to the reality we were living
posted by Wilder at 12:06 PM on April 4, 2017 [2 favorites]

> Am I making eye contact in appropriate amounts

Jesus, I hate eye contact. You know how disability-rights activists work to make curb cuts a required thing, and we all benefit from curb cuts even if we don't use wheelchairs (e.g. when pushing a bike or a stroller, or wheeling a suitcase)? Maybe increased acceptance of a neurodiverse world will make it acceptable to not make eye contact all the freaking time.

My son, who was diagnosed with autism, had a teacher in elementary school chide him, in front of me, "I expect my students to make eye contact with me." Why. Why. Whyyyyyy. What's wrong with glances? I like glances.
posted by The corpse in the library at 12:43 PM on April 4, 2017 [11 favorites]

a little commentary running in the back of my head during all social interactions
Ha, ha, what a touching comment about your particular quirk! That is definitely an intriguing psychological abnormality which is new to me, and not something I assumed was a near-universal human trait right up until seeing the "camouflaging" link.

* Grr, that joke still comes off as too forced. Should I delete and rewrite that second sentence again? Maybe the first or third drafts weren't so bad after all?
posted by roystgnr at 1:00 PM on April 4, 2017 [5 favorites]

Maybe increased acceptance of a neurodiverse world will make it acceptable to not make eye contact all the freaking time.

That may happen! Researchers have found that while eye contact does seem to be an important part of social communication everywhere, it works differently in different cultures. So maybe as culture changes it might get easier.

For example - Uono, S., & Hietanen, J. K. (January 01, 2015). Eye contact perception in the West and East: a cross-cultural study. Plos One, 10, 2.)

I have the opposite problem, btw. I start and then can't stop. It's amazing how uncomfortable it makes people when you lock eyes with them.
posted by epanalepsis at 1:00 PM on April 4, 2017 [4 favorites]

A lot of this rings very true for me as well. I always knew I likely had some symptoms - one sibling is formally diagnosed with autism, and the other is kind of similar - but more of my actions and quirks than I thought seem to be used as indicators.

I knew about the sensitivity, and I definitely have touch, sound, and visual triggers. What surprised me is that my propensity to dance when I am happy or touch, pinch, and rub my face could be considered stims. I was also hyperlexic, reading around two or three years old, and I drop small things constantly. I'm mildly obsessed with money management. Just lots of odds and ends.

I did have to learn how to do a lot of normal social things after I graduated university and I did it mostly through quiet observation and using what I read about online; I didn't mess up too often. Thing is, I just thought that I just didn't find it natural because I was coming off of a decade plus of depression and a TERRIBLE home situation. I felt like I was just behind because everyone else had a bunch of "social practice" time on me while I had been otherwise drained by my home life.

In any case, I was too happy to be out of the situation and get invited to my first parties to care that much. :)

Anyway, thanks for this! It's not something that troubles me, but it's something that I'm interested in reading more about.
posted by one of these days at 1:17 PM on April 4, 2017 [3 favorites]

The woman in this article doesn't sound particularly impaired by her autism, and the kind of accommodations she needs are the sorts of kindnesses that everyone deserves whether they have a diagnosis or not. If you're in the hospital, in pain and going through exhausting tests, you shouldn't have to melt down and collect a named-disorder stamp on your chart, just to get a sandwich and a little quiet!

It seems to me that these lists of autistic traits are like astrology. Every horoscope is just vague enough, yet also specific enough, that you can find yourself in there. Or convince yourself that you have.

I'm sure there are plenty of undiagnosed autistic adults out there. But the things on these lists, are mostly not very unusual. You don't have to self-diagnose, to be kind to yourself. Or diagnose others, to be kind to them. Just be kind.
posted by elizilla at 3:09 PM on April 4, 2017 [1 favorite]

I was slightly older than two myself, and by the way, many people think this (hyperlexia) never occurs in people who aren't on the spectrum. Or so my Very Serious internet research tells me. :P

I have two children, both hyperlexic, one autistic, the other not.
posted by bq at 3:15 PM on April 4, 2017

Maybe increased acceptance of a neurodiverse world will make it acceptable to not make eye contact all the freaking time.

Maybe it would, but I guarantee you that all that would do for women would be to turn "my eyes are up here" into some sort of ableistic statement. (The exact same way that "being a creep" is justified on the basis of ASD.)
posted by steady-state strawberry at 5:16 PM on April 4, 2017

Nah. I very rarely make eye contact with my therapist. I can tell you all about his ottoman, the rug design, the base of a floor lamp. I could not tell you anything about his shirt.

Yes, it's a bit of mindfulness to not stare off into a woman's chest. But it's not nearly as uncomfortable as forcing eye contact to appear normal.
posted by politikitty at 5:48 PM on April 4, 2017 [2 favorites]

This kinda drives me nuts when people say "it's like astrology." No, autism diagnosis is *nothing* like astrology. In astrology, for one, you don't have to meet a set number of criteria to "qualify" as being whatever sign you are. You just pick the ones that fit and ignore the ones that don't.

Now, not everyone with autism has every symptom— but to meet DSM criteria for autism, you must meet enough of those criteria to score extremely out of the norm for the population. That's how DSM diagnoses work— are they perfect? Fuck no. But they are far more scientific than astrology.

To be autistic and not simply introverted, you have to have symptoms that cross domains, which include repetitive/compulsive behaviors, language issues (though, at the Aspie end of the spectrum, these may not be present), social difficulties and sensory issues.

If you don't have symptoms in at least 3 of these 4 categories, you aren't going to meet criteria.

Yes, psychiatric diagnosis is deeply problematic. But it ain't astrology and if you are self diagnosing and picking and choosing rather than doing so systematically, you're probably not autistic ;-)
posted by Maias at 6:20 PM on April 4, 2017 [6 favorites]

I've never been sure what a meltdown *is*, exactly.

Is it like when someone gets a new set of windchimes, and it's a windy day, and they sound so so SO horrible and clashing and awful, and you put earplugs in and wrap a towel around your head so you can't hear anything, and go lie down for an hour?

Asking for a friend.
posted by yohko at 6:36 PM on April 4, 2017 [2 favorites]

I've never been sure what a meltdown *is*, exactly.
I have sensory processing issues, and when I get overstimulated, it feels kind of physically awful. I get vertigo: it feels like the earth is moving, and I'm unsteady on my feet. I don't think I've actually fallen down in public, but I feel like I'm going to. Sometimes I get panic attacks, which feel like I can't breathe. I don't think these are actually meltdowns, because they're not perceptible to anyone but me and people who are paying very close attention to me. Meltdowns, I think, may require you to behave in ways that seem socially unacceptable to other people, and I just get really quiet and try to remain upright and make myself breathe and get away as fast as possible. I don't think I could scream if I wanted to. But I think that sensation plus making some sort of visible scene would be a meltdown.
posted by ArbitraryAndCapricious at 7:08 PM on April 4, 2017 [3 favorites]

yueliang, I have an ADHD diagnosis and ticked off about 70% of that checklist, so, uh. I have some more research to do?

I was also hyperlexic, for what it's worth-- my parents tell the story of how they found out I could read, at age three, when I asked for gum on a car trip. They said there wasn't any, so I asked if we could stop at the pharmacy up ahead, having read the sign.

(I feel like figuring out on my own that the 'ph' in 'pharmacy' makes an 'f' sound at 3 earned me the gum, tbh.)
posted by nonasuch at 8:43 PM on April 4, 2017 [1 favorite]

I liked this comic for creating a wheel to explain the autism spectrum. I think I first clicked on it because there's a lot of talk about the line between ADHD and autism, since both factor heavily into poor control over executive function.

Add sensory meltdowns and a running commentary/checklist for social interactions (which have mostly been chalked up to anxiety), and I have brought up "what if I have autism" to my therapist a few times. And it comes down to the fact that it wouldn't really change my treatment or require legal accommodations that would require a formal diagnosis, but that it does open up a vocabulary to explain and relate my experience. Because being an introvert doesn't really describe my distaste for leaving the house. It's not the social interaction that's draining, it's the peripheral conversations I can't tune out, the crowded bus, having to wear shoes.

(Not trying to say that it's okay when neurotypical people co-opt mental health language. Only that a better understanding of ASD has been helpful even if I don't have a diagnosis)
posted by politikitty at 1:48 PM on April 5, 2017 [3 favorites]

I learned that I am autistic at 48. I experienced a trauma at 45 and lost my ability to camouflage. I no longer had the mental or physical energy it takes to mask my autism. This is sometimes referred to as 'autistic burnout'. 

My response to learning I am autistic was relief. I could look back over my life and understand myself for the first time. It gave me vocabulary to explain things to family and friends that I had not let them see before, and tools to make myself more comfortable in the world. A huge takeaway for me has been that while passing for 'normal' might make the people around me feel more comfortable, it takes an enormous toll on me and I don't have to do it. Other people can accommodate me instead of my accommodating them all them time.

I chose to go to the doctor because my symptoms were interfering with my ability to do what I wanted and needed to do and causing me distress.

I personally feel some of the lists of 'traits' on blogs cast an awfully wide net. Self-diagnosis can be perfectly valid, but it should be based on the best information available, which is not necessarily a list put together by another self-diagnosed person.

As for what a meltdown feels like, for me the metaphor that comes to mind is an overheating laptop. First my internal fan gets very loud (which might manifest as outward behavior or might just make things very uncomfortable in my head), then I shut off. I need to lie down and curl up immediately until it passes and I reboot. This happens less often than what I think of as 'going into overwhelm', which always precedes a meltdown but doesn't always lead to a meltdown. Overwhelm is where I might look normal on the outside but I can't think or process what people are saying to me, and everything around me is overstimulating to the point of feeling physically painful. I have physical pain from being overstimulated just about daily, overwhelm regularly but not necessarily daily, and meltdowns less regularly.

Tony Atwood is an imperfect ally, but he has some videos about women/girls on youtube that give some good information, and Amythest Schaber has a wonderful video series, Ask an Autistic
posted by ruetheday at 5:47 AM on April 6, 2017 [8 favorites]

I'm wondering what's the difference between high-functioning adult autism and strong introversion

Sensory weirdness for one thing (central auditory processing disorder, misophonia, sensitivity to touch/texture, inability to filter out "background noise", etc); difficulty with social cues (including nonverbal communication--the whole "not making eye contact" thing for instance? Yeah, I don't do that, because direct eye contact feels threatening--and nonliteral speech), and frequently "perseveration" (oddly specific interests and repetitive behaviours).
posted by Pseudonymous Cognomen at 1:11 PM on April 6, 2017 [1 favorite]

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