The role of sex and gender in autism
October 27, 2015 9:09 AM   Subscribe

The Lost Girls: 'Misdiagnosed, misunderstood or missed altogether, many women with autism struggle to get the help they need.' Part of Spectrum's Sex/Gender in Autism special report.

Since autism is at least three times as common in boys as in girls, scientists routinely include only boys in their research. Since diagnostic tests are based on observations of only one gender, this "almost certainly contributes to errors and delays" in diagnosis and treatment of girls. (On average, girls who have mild symptoms of autism are diagnosed two years later than boys.)

However, it now appears that while autism’s core deficits may be the same for both genders, the lived experience of a woman with autism can be dramatically different from that of a man with the same condition.

Also see: 'Focus on autism must broaden to include non-binary genders', a first-person account of what it means to fight for equality and dispel myths about society’s gender norms.
posted by zarq (33 comments total) 52 users marked this as a favorite
Thank you for posting this.
posted by Gwynarra at 10:00 AM on October 27, 2015 [1 favorite]

This is an excellent article — I'd read it earlier. Our understanding of autism seems to be going through a revolutionary shift right now, from a medical model where autism is a disease that afflicts somebody, with a resulting focus on "curing" it, to a model where there's an understanding that autistic brains are different from non-autistic brains, with a focus on how to support autistic people so they can live well as autistic people. There's also the increasing awareness that it manifests differently in women than in men, and the growing understanding that it really is a spectrum, so different people may be affected very differently by it. And also a greater focus on listening to what autistic people say about their own experience, instead of what parents and professionals say about it…

It's a very interesting time. Thanks for posting this article.
posted by Lexica at 10:03 AM on October 27, 2015 [6 favorites]

Since autism is at least three times as common in boys as in girls, scientists routinely include only boys in their research

Isn't it that it's diagnosed at least three times as often in boys? That's a different issue -- and one that's made worse by including only boys in studies.
posted by The corpse in the library at 11:42 AM on October 27, 2015 [9 favorites]

I'm not an expert on the subject, a physician or clinician. But my understanding from the articles in this report is that autism is both more prevalent in boys and more frequently diagnosed, and that even accounting for possible improper diagnoses, boys are more likely to have autism than girls. I could be wrong though.

The gender bias article touched on this a little.
posted by zarq at 11:58 AM on October 27, 2015

I just about broke my neck nodding vigorously along with this part:
Particularly interesting is the unpublished observation that in girls with autism, the social brain seems to communicate with the prefrontal cortex, a brain region that normally engages in reason and planning, and is known to burn through energy. It may be that women with autism keep their social brain engaged, but mediate it through the prefrontal cortex — in a sense, intellectualizing social interactions that would be intuitive for other women.

“That suggests compensation,” Pelphrey says. It also jibes with women like Maya saying they have learned the rules of social interactions, but find it draining to act on them all day. “It’s exhausting because it’s like you’re doing math all day,” Pelphrey says.
This is precisely my experience of trying to negotiate social situations, and it's so fascinating to hear that there might be a physiological basis for this! No wonder social situations exhaust me so much. I knew it was harder for me than for most people, but I honestly had no idea that not everyone processed all social signals, both incoming and outgoing, by intellectualizing them first (or at least probably not to the exhausting extent that I do).

Great post, thank you!
posted by dialetheia at 12:09 PM on October 27, 2015 [48 favorites]

I am 24 years old, female, and I almost certainly have autism. A lot of Maya's story (though not all) resonated with me. I have no idea what to do or if I should do anything. I've been able to get through life with all the traditional markers of success so far, but I know I'll always inhabit a slightly different world from most people. I'm mostly having to figure out how to live in this world one little thing at a time.

A 2012 paper that laid out this ‘female protective effect’ in autism marked a turning point in the field

And there may well be a genetic protective effect but--as I think the article alludes to but doesn't state outright-- the real female protective effect, the real thing letting so many girls with autism go under the radar, is that female children are repeatedly given exactly the thing that any person with an autism spectrum disorder spends their whole life begging for: ACTUAL RULES FOR SOCIAL INTERACTION. Pretty much every day being female in the world consists of being handed rules. Stand up straight. Make eye contact. Don't be too loud. Wear this, don't wear that, shave this, put on makeup like this. Be sure to couch your opinions in these hedging phrases so you don't seem too assertive. Here's how quickly you should text a guy after the first date. I mean, ha, that awful book is literally called The Rules. The problem is that those sexist "rules" are often deeply damaging, emotionally, in Maya's case and many others' physically, and for people without innate social awareness, fighting back against sexist programming is all that much harder to navigate.
posted by capricorn at 12:10 PM on October 27, 2015 [32 favorites]

Re: gender bias, my understanding is that it's just a really nasty feedback loop. We mostly study autism in boys, so we're more familiar with the way it manifests for them. That knowledge feeds into the criteria we use for diagnosis, which then further reduces the number of girls who will be diagnosed with autism because we're using criteria that don't cover their behaviors (or that even exclude them). The misdiagnosis (diagnosing girls with e.g. borderline and totally overlooking the possibility of autism even when the criteria would otherwise be met) is related but distinct from the problem of overly constrictive diagnosis criteria that tend to favor mens' symptoms.
posted by dialetheia at 12:18 PM on October 27, 2015 [11 favorites]

I have nothing to really add to this discussion except that this was fascinating!

I never considered that my "picture" of autism is totally, 100% male, and that I don't think that I've ever met a woman with autism, though this article points out that I may not know.

Poor girl with the psychiatric misdiagnoses though! hopefully the increased attention to this helps with future diagnoses.
posted by euphoria066 at 1:04 PM on October 27, 2015 [1 favorite]

Baron-Cohen, Happé and others caution, however, that in some cases, women may have learned to cope enough that they don’t actually need a diagnosis.

“If they’re coping, do they want to think of themselves or for others to think about them in that way?” asks Happé. “Then it becomes a big ethical issue, doesn’t it?”

I also have hugely mixed feelings about this. I'm not open about my diagnosis in my regular life because I find that a lot of people treat me very differently once they find out. I get less bizarre treatment when I'm seen as an "odd duck" flaky/oversensitive woman rather than an autistic woman. Instead of giving me more understanding for my shortcomings, I find that knowing my diagnosis just makes people generally distrust me and assume that I'm incompetent. I get a ton more condescending comments and people jump to it as the default explanation for everything in my life - "oh yeah, of course you suck at that because you're autistic."

Where I might otherwise have been seen as flaky in one or two situations but generally quite competent, once people find out I'm autistic, I can become completely and totally unreliable in their eyes. A lot of that is related to how people tend to think of autism as only including people who need a great deal of visible assistance in their everyday lives, when it isn't like that for everyone (at least not now that Aspergers has been fully folded into the spectrum). It seems to erase my baseline competency that I've worked so hard to attain, so I keep it to myself for the most part but I don't go out of my way to hide it.

But at the same time, it's been unbelievably valuable to me personally to finally understand how all of these seemingly disparate symptoms interact with each other and to come to terms with some of the limitations I have in certain contexts. Just trying to figure out what was going on with me took up a lot of my time and energy before I was diagnosed, so I don't miss that ongoing mystery at all.

Finally, it's certainly valuable not to be misdiagnosed and given drugs that did nothing but ruin my life. Just from talking to other women with autism online, it is super, super common. Most of the misdiagnosed people I've talked to ended up with borderline or bipolar diagnoses first - I've gotten both. I just about cried after reading the first couple of paragraphs of this article because I the ~18 months they had me on antipsychotics were the absolute worst of my entire life. I gained tons of weight, couldn't think straight, couldn't get out of bed, couldn't see any reason for doing anything. It hurt my cognitive function so badly that my intellectualizing coping skills stopped working and everything got even harder. Misdiagnosis is a huge deal, and while it might be easy to abstractly handwave a two-year differential in diagnoses between men and women, those two years can be truly excruciating and harmful and can discourage women from coming back and getting more psychiatric care in the future (and that's not even starting on how incredibly poorly the psychiatric establishment treats women with borderline).
posted by dialetheia at 1:18 PM on October 27, 2015 [33 favorites]

I'm still processing this. I'm in the "lost a decade of my life due to misdiagnosis camp" and my life has changed so much in the past couple of years that I'm still reeling from the results.

I believe that the impact of misdiagnosis cannot be overstated. Recognition and support for women with Autism is essential.

...but, I'm also struggling to care, because while my life has improved, I feel like it's too late. I'm nearing 40, and while I'm hopeful for younger generations, this has passed me by.

That's why I've spent the last few hours trying to work on a reply. I can't seem to find a way to balance my personal pain with the wider message that focuses on the harm and growth that un(awareness) of how Autism impacts women.

and I wonder if finding that balance -or replying- is even necessary, because I hope that someday soon my experiences will be a thing of the past.
posted by bindr at 1:54 PM on October 27, 2015 [7 favorites]

Besides the obvious gender difference and the fact her family seems to be far more privileged and supportive than mine, my story is basically a more modest version of Maya's. Her gender seems to have made her a target, while I was mostly left alone. Although, to her credit, she seems to be doing all right now. I just barely left the edge my of own rut - it's going to be a while before I get to where she is.

I don't wish to derail this thread away from women, so I'll just note that it was a rather difficult but necessary read for me. The challenges autistic women face are so overwhelming, that I have difficulty understanding other than in broad conceptual way. To understand at a deeper, emotional level is my challenge, and frankly, the least I can do.
posted by Freelance Demiurge at 1:58 PM on October 27, 2015 [1 favorite]

"Because autism is at least three times as common in boys as in girls, scientists routinely include only boys in their research."

Actually, the reverse is true and, as a woman on the spectrum, I would be delighted if people writing articles on autism stopped spreading this misinformation. If you read about Hans Asperger's discovery of autism in pre-WWII Vienna, you will discover that like 99% of his patients were boys (from all the literature I've read on the subject I remember one single girl patient). It stuck. With more research on autism in women, I'm sure the ratio will get closer to 50:50.
posted by frantumaglia at 2:00 PM on October 27, 2015 [5 favorites]

The problem is that those sexist "rules" are often deeply damaging, emotionally, in Maya's case and many others' physically, and for people without innate social awareness, fighting back against sexist programming is all that much harder to navigate.

Now I'm wondering whether people on the autism spectrum are more vulnerable to sexual assault, particularly "date rape". My intuition says yes, but I don't know.
posted by Joe in Australia at 4:07 PM on October 27, 2015 [4 favorites]

Research shows that people on the autism spectrum, like people with mental illnesses, are much more likely to be the victims of crime than to be perpetrators. Women with autism are, as you speculate, easier targets for victimizers and many adult autistic women have stories of abusive or exploitative relationships.

People with autism are also often victims of what's been dubbed "mate crime", in which people claiming to be friends actually victimize them — a recent study in the UK found that more than 80% of autistic people between ages 16 and 25 had been the victim of this kind of abuse.
posted by Lexica at 4:40 PM on October 27, 2015 [16 favorites]

My psychiatrist when I was 20 made me have psych testing done for ADHD. Somehow I'd mostly forgotten until today (2.5~ years later) that they diagnosed me with Asperger's.

I talked to my parents about it right after I had the testing done, and apparently the testing I'd had to get when I was 7 or 8 also indicated that. No one thought to tell me, though! And they decided it must have been wrong, because ... I didn't act 'strange' enough? Or something?

I think I tried to forget about the diagnosis because as far as I can tell, it hasn't displayed in me the way it does with most men, and I wasn't really aware that it usually was expressed differently in women. (I'm not a woman, but I was raised as a girl, went to an all-girl school, and I guess I would say that I used to id as female.)

Looking at the diagnosis now, it seems to fit better, but I don't know how much is that I have a broader view of what autism-spectrum can be like, or have I been unconsciously fitting my own traits and behaviors into that framework for the past few years, or ...

It's frustrating because I never really saw myself in any of the narratives of austistic men, but suddenly I've seen autistic women writing and it's like hey, that's me!.
posted by you could feel the sky at 5:15 PM on October 27, 2015 [5 favorites]

Great read, zarq.
I share so many character istics with people on the autism spectrum that I've wondered, off and on ever since I knew it existed, if I was on it myself. I've asked various doctors and therapists for their opinions over the years, when I was seeing them for other things, and they've said they didn't think so. But I'm always left with that niggling doubt that maybe they think you have to be male and good at math.

At any rate, I'm not sure if a diagnosis and therapy would so mw that much good at my age.
posted by The Underpants Monster at 6:19 PM on October 27, 2015 [2 favorites]

It may be that women with autism ... intellectualiz(e) social interactions that would be intuitive for other women.

As a woman with ASD, I've got to ask: Is this really a new discovery? Since the day I was diagnosed, it's been drilled into me that most neurotypicals can process social interactions unconsciously, but the fact that most researchers assumed people with ASD couldn't learn things consciously is stunning. If it actually is new, it explains pretty much everything about the (absence of) useful resources out there for adults (i.e., men) with Asperger's syndrome / high-functioning ASD.
posted by steady-state strawberry at 4:52 AM on October 28, 2015 [1 favorite]

Huh, that's interesting. I think of myself as a vaguely-autism-adjacent non-autistic person. I was diagnosed as a kid with sensory processing disorder, which I still have issues with, and I stim. (My main stim is chewing my tongue while humming tunelessly. That made me super popular in junior high. I can now control it so I only do that when I'm alone, and I do much less noticeable things in public.) I'm a geeky obsessive, although at this point in my life I'm pretty good at expressing geeky obsessions in socially-appropriate ways. I was anorexic as a teenager, and Maya's description of her anorexia sounded really familiar to me. I've always contended that my eating disorder was at least in part related to these issues. On the other hand, I've always been pretty verbal. I was an early talker and an early reader. I have an overactive imagination, and I like reading fiction. I am not great at picking up on social cues, but I don't think I lack empathy, and I'm actually pretty attuned to other people's feelings. If anything, I'm a little overly empathetic: I find it hard not to cry when other people are upset. I've always thought that I couldn't be autistic because I'm empathetic and imaginative and whatnot, but now I'm wondering if I'm working with an incorrect definition of autism. I mean, I'm not going to self-diagnose or seek out a diagnosis or anything, but it's an interesting thought!
posted by ArbitraryAndCapricious at 5:55 AM on October 28, 2015 [4 favorites]

On the other hand, I've always been pretty verbal. I was an early talker and an early reader. I have an overactive imagination, and I like reading fiction. I am not great at picking up on social cues, but I don't think I lack empathy, and I'm actually pretty attuned to other people's feelings. If anything, I'm a little overly empathetic

All of that is perfectly consistent with the way autism tends to manifest in women (and in men, for that matter). Being verbal (folks with what used to be called Aspergers are often hyperverbal, in fact), reading tons of fiction, and having a good imagination are not at all inconsistent with autism. The empathy part in particular is not an accurate way to think about things, at least in my experience. The "intense world" hypothesis might help to reframe the issue:
“I can walk into a room and feel what everyone is feeling. The problem is that it all comes in faster than I can process it.”

“There are those who say autistic people don’t feel enough,” says Kamila Markram. “We’re saying exactly the opposite: They feel too much.” Virtually all people with ASD report various types of oversensitivity and intense fear. The Markrams argue that social difficulties of those with ASDs stem from trying to cope with a world where someone has turned the volume on all the senses and feelings up past 10.
I say this not because I care whether anyone thinks of themselves as being autistic or not, but because those stereotypes hurt me and influence the way that people treat me when they find out I'm on the spectrum. While there may be issues with the expression of these traits, I don't think that it's a fair or accurate way to think about autism.
posted by dialetheia at 11:39 AM on October 28, 2015 [11 favorites]

Interesting, dialetheia. I think I may not understand what autism is! I will do some more reading. I apologize for perpetuating ideas that hurt you.
posted by ArbitraryAndCapricious at 11:57 AM on October 28, 2015 [1 favorite]

What always winds up tripping me up about social interactions or reading people is that because I route so much of my social decision-making through conscious processes, when I'm tired or distracted my ability to perceive sarcasm or read people's emotions or deal with non-literal communication goes right into the shitter. I make a lot of "sarcasm detector's malfunctioning" jokes, but really it comes down to the fact that I have a limited amount of bandwidth and, as far as I can tell, those functions draw from my cognitive capacity in a way that isn't always true for other people.

On the upside, I'm pretty good at explaining my thought processes regarding social interactions and my philosophy of relationships, plus why I make the choices I do in social situations... because I've consciously thought about all of them as I'm doing them, so I don't need to stop and figure out why I'm doing what I do so I can explain it. It's the same reason that true naturals at any activity are frequently the most rotten people to teach those things. It also means that I can be told I'm both very perceptive--because when I'm paying attention, I'm paying attention and thinking about what I see--and also very bad at picking up signals, because paying attention isn't something that I can do while also doing just about anything else. Takes up too much attention, you know?

I also talk much less frequently about my experiences as a pretty clearly autistic spectrum woman these days, for reasons that have been elucidated in this thread. One is that as dialethia beautifully points out, talking about my diagnosis makes people get really judgmental of me really fast. If anything, they give me less slack and treat me as more of a "liar" or a malingerer when I talk about being on the autism spectrum than they do if I'm quiet about that. The ones who do believe me seem to have a hard time working through their baggage about what it means to be autistic, since I don't act like Sheldon motherfucking Cooper or in other ways like an autistic seven-year-old boy. Which is kind of a double standard, since no one seems to expect women without autism to be much like seven-year-old boys without autism, but what the fuck ever. This weird lack of ability to comprehend that autistic spectrum people can actually (gasp!) learn and develop skills while also not magically turning into perfectly neurotypical people makes it really hard to discuss that experience in public.
posted by sciatrix at 12:34 PM on October 28, 2015 [14 favorites]

I'm a long time metafilter lurker but I was so blown away by these articles and the comments here. This explains SO MANY THINGS about my life that I had to go make an account to say Hello and Me Too. And I also feel suddenly scared of bringing this up with anyone in my life, because of the judgement. I'm in my 30's, I have learned how to cope well enough to have a good job and a stable long term relationship, and I'm socially functional enough that most people don't find it difficult to interact with me beyond "you're strange, but ok." But there is SO MUCH willpower and conscious effort and time-consuming self-care behind that appearance of normal functionality. And the road to get here has been fucking hard and completely lonely and I almost didn't make it at several points.

But I'm not sure what to do with this information now? Like a couple other people in this thread, I'm wondering if a diagnosis at this late age would help me or hurt me (somehow). Or if there's even any point to it, given that I have adapted on my own. If anyone has thoughts or experiences about adult diagnosis I'd appreciate hearing them.

That being said, just the knowledge that there are a few other people out there who have been through this stuff too, and my difficulties might not be just a unique and individual defect in my character/willpower, is very valuable to me. So thanks for speaking up, all of you.
posted by it's FuriOsa, not FurioSA at 12:56 PM on October 28, 2015 [12 favorites]

If anyone has thoughts or experiences about adult diagnosis I'd appreciate hearing them.

I do not have autism. I hope you don't mind my offering a bit of personal experience, though?

When I was in my early thirties, I started looking into two aspects of my own personality:
- I am very, very introverted and awkward in social situations -- especially those involving more than one person.
- I fit most of the trait characteristics for ACOA.

Neither are similar to having autism. However, in my experience, knowing certain things about ourselves can be helpful: Why and how we are likely to react in certain situations, and how our reactions may differ compared to others. Especially if our reactions are outside the norm. What situations we find draining, or difficult to navigate. Etc.

In my case, it was incredibly helpful to see behavioral patterns I perpetuated in my own life. Because I could learn to recognize and navigate them. Whether they were harmful or not. For me, this was a way to (as sciatrix mentioned) learn and adapt.

I don't know if any of this can apply to you, or anyone else with autism. But personally, I found the knowledge helpful.
posted by zarq at 1:08 PM on October 28, 2015 [4 favorites]

Ultimately, getting a diagnosis is one of those things that seems like it would be useful if it were socially useful, but it doesn't seem to be socially useful, so I'm not really interested in it.

FWIW, I have one (from age 12) and the social fallout from actually mentioning it is not worth any benefits I'd get out of it; my coping mechanisms serve me well enough as it is. I'm not entirely sure I still have access to the documentation at this point. I have a friend who got diagnosed recently as an adult because she actually does need some accommodation for sensory processing stuff, and another friend who got diagnosed because ze needs support and help for executive dysfunction related stuff. For reasons like that I might seek diagnosis if you need, say, a reason to ask people not to pipe music through a room where you have to be talking to students or needed the disability support documentation. Otherwise, I mostly wouldn't bother.

Aside from that.... eh, it's often a peace of mind thing or a "jesus christ, Internet, would you quit hating on self-diagnosed people for once? adult diagnosis is expensive as shit because no one trains most psychs to see through adult autistic coping mechanisms. besides for anyone my age or older it was REALLY LIKELY that girls in particular would slip through undiagnosed because autism is a tiny train obsessed white boy thing duuuuhhh." ...thing.

By which I mean that people who self-diagnose or who are tentatively trying to figure out how to self-diagnose hit a whole lot of Internet pushback and gatekeeping about that which can make it hard for people to feel they can access autistic dialogue for potentially helpful tools for understanding their lives. For a lot of people, having an official diagnosis is like getting to say "Okay, I'm officially welcome to understand myself this way and NO ONE CAN TELL ME OTHERWISE, SUCK IT INTERNET." I am proud of you guys for not being dicks to self-diagnosed folk here, by the way! Please let us continue doing that.
posted by sciatrix at 9:21 PM on October 28, 2015 [11 favorites]

The empathy part in particular is not an accurate way to think about things

The whole "autistic people don't have empathy" thing is outdated misinformation. An autistic person may have difficulty expressing the emotions associated with empathy, but can also have quite normal or even heightened empathy.
posted by HiroProtagonist at 8:40 PM on October 29, 2015 [1 favorite]

Current thinking is that there are two kinds of empathy, cognitive empathy and emotional or affective empathy.
Emotional empathy (EE) is the feeling without thought. It’s the punch to the gut that we feel when we are horrified. It’s also the exuberance that we feel when we witness an uncommonly beautiful sight, such as a full rainbow. It’s the ability to feel the feelings of another regardless of whether we understand those feelings.

The emotions are there. The tears flow. The blood rushes to our face. Our heart beats faster. It’s an experience that fills the entire moment to the brim of our being. For Aspies, this moment spills over into everything and onto everyone around them.

Cognitive empathy (CE) is the analytical side of empathy. It’s being able to see someone’s emotional response and understand what’s causing it.

NTs have a good balance or interplay between cognitive empathy and emotional empathy, whereas Aspies do not. They struggle to recognize where someone’s distress is coming from (CE) and they struggle with knowing how awful someone is feeling (EE). And they can’t easily move between the two, whereas most people can combine EE and CE so as to be able to put personal needs aside for the moment and reach out to comfort another.
The "Intense World" theory suggests that autism results from mental overload.
This theory suggests that autism is not a mental deficit, but a mental overload. Autistic children deal with this by trying to shut off the outside world.

Proponents say that autism can be described by hyper-perception, hyper-attention and hyper-memory.

All the minds major functions are working at increased capacity, perhaps explaining why autistic children shun social interactions.

Rather than being uninterested in other people, autistic children may find the sudden rush of information from others too much to cope with.

Typically a lack of empathy is described as one of the main features of autism. But the Intense World Theory suggests the opposite: it actually produces over-sensitivity.
From an article about the Intense World theory by MeFi's own Maias:
So, why do so many people see a lack of empathy as a defining characteristic of autism spectrum disorder?

The problem starts with the complexity of empathy itself. One aspect is simply the ability to see the world from the perspective of another. Another is more emotional – the ability to imagine what the other is feeling and care about their pain as a result.

Autistic children tend to develop the first part of empathy – which is called “theory of mind” – later than other kids.…

It takes autistic children far longer than children without autism to realize other people have different experiences and perspectives – and the timing of this development varies greatly. But that doesn’t mean, once people with autism spectrum disorder do become aware of other people’s experience, that they don’t care or want to connect.
Some researchers think that autistic people's apparent lack of empathy may be due to inadequate skills, not a lack of feeling. (Oh, and autistic people are not psychopaths, thank you very much.)
The skill of "mind reading" - understanding anothers' thoughts through careful observation of body language, vocal tone, facial expression, etc. - is key to empathy. People with autism often have a very difficult time with "mind reading," though it's clear that the skills can be taught. While Simon Baron-Cohen chalks up lack of mind reading skills to an "extreme male" brain which focuses on systems rather than on relationships, Dr. Uta Frith notes that "failure of bonding or attachment does not appear to be a distinguishing characteristic of autism in early childhood." A related study by Jones et al which compares psychopathic to autistic children finds "the affective/ information processing correlates of psychopathic tendencies and ASD are quite different. Psychopathic tendencies are associated with difficulties in resonating with other people's distress, whereas ASD is characterised by difficulties in knowing what other people think."
posted by Lexica at 2:34 PM on October 30, 2015 [6 favorites]

Citizen Autistic is a documentary featuring autistic adults discussing their problem and disdain for the juggernaut that is Autism Speaks.

As the single largest autism-related nonprofit out there, there are no autistic board members leading Autism Speaks, the money they raise goes to public relations and research rather than support for autistic families, and in general their propaganda represents autism as some horrible fate, a "stolen life", and something to be "cured". It's gatherings are very unfriendly to actually autistic people (both by having loud noises, drums, no timetables so people can know what to expect, as well by having AS representatives try to bully autistic adults who come to pass out literature to attendees explaining their stance as actually autistic people against AS's program, philosophy, and way of doing business.)

As multiple autistic adults in the movie report, they feel like the parents who run Autism Speaks "resent the fact that they have an autistic child" and this shapes the philosophy and priorities of AS. As people with autism, members of groups like the Autistic Self Advocacy Network And Auism Aspergers Spectrum Coalition for Ducation Networking and Development would prefer the focus to be on support for people/ families with autism, legal/ societal changes to make the world more accommodations to people with their disability.

Instead, what they often get is children given shock-belts stronger than and zapped over and over until they stop stimming and learn to look people in the eye. A stun gun today delivers 3-4 milliamperes of juice. These belts used to shock autistic kids into compliance deliver 30.

Rather than train the autistic how not to make neurotypicals uncomfortable in public using pain compliance and torture, ASAN and groups like them want protections so that people with autism can be accepted as part of society on their own terms and support as persons with a disability. They want to have a voice in the national conversation about autism, not be merely the subject of discussion.

What they want is "Nothing about us without us".

What they get instead is "Autism Speaks".

And if it does, it does so in a voice that is not itself autistic, does t want to hear from the actually autistic, doesn't think a life with autism is a particularly worthwhile one, and sucks up money to a national group with HIGHLY PAID EXECUTIVES that could otherwise go to local autism societies with local priorities.
posted by Pirate-Bartender-Zombie-Monkey at 10:46 AM on November 2, 2015 [14 favorites]

That song was written n response to the AS propaganda short "I Am Autism", which reflects the perspective so many autistic adults find offensive.
posted by Pirate-Bartender-Zombie-Monkey at 11:03 AM on November 2, 2015 [1 favorite]

I just came across this video: My Autistic Twin and Me. Rachel and Jenna are 16-year-old identical ("no we aren't!") twins. (The bit where the autistic one talks about wanting to protect her sister "because she's a very pretty young lady and boys take advantage of that" made my eyes prickle. Everybody knows that "autistic people have no Theory of Mind." Bah.)
posted by Lexica at 6:47 PM on November 10, 2015 [4 favorites]

"One aspect is simply the ability to see the world from the perspective of another."

"Some researchers think that autistic people's apparent lack of empathy may be due to inadequate skills, not a lack of feeling... The skill of "mind reading" - understanding anothers' thoughts through careful observation of body language, vocal tone, facial expression, etc. - is key to empathy. People with autism often have a very difficult time with "mind reading," though it's clear that the skills can be taught. "

OMG, that would explain why I never knew that other kids really believed in Santa Claus.

It also would explain how I used to get more easily attached to people in books than to people I met in real life when I was little - the books told you what you needed to know about the characters instead of leaving you guessing.
posted by The Underpants Monster at 9:02 AM on November 11, 2015 [4 favorites]

Rather than train the autistic how not to make neurotypicals uncomfortable in public using pain compliance and torture, ASAN and groups like them want protections so that people with autism can be accepted as part of society on their own terms and support as persons with a disability. They want to have a voice in the national conversation about autism, not be merely the subject of discussion.

That's fantastic and everything, but (in the context of the post) there's a ton of gender issues that get erased when we talk about 'ASD activism.'

To summarize my own experiences, men with ASD are allowed to want to be accepted as men with ASD. Women with ASD have to work to be accepted as women. "Having a voice in the national conversation" is far easier when (as alluded to in TFA) you're not putting in the emotional labor to teach yourself social skills / facial expressions / manners in your spare time so that you can make friends or succeed in your career. Dismissing acquisition of social skills as something that's only there to benefit neurotypicals is a lot easier when violating social norms don't put you at risk of sexual assault. Believing that you have the right to be accepted on your own terms is an incredibly gendered privilege,(*) and it's so gendered that I for one am not sure it's worth fighting for.

Do people with ASD have the right to not be tortured? Definitely. But, given that, as a woman with ASD, I have to learn social skills to survive, there are days I have an urge to stab the ASD self-advocacy movement through the heart with an intersectional knife.

(*) Also racial, I assume -- a male POC is not going to be allowed to act out in ways that white men can get away with in our culture.
posted by steady-state strawberry at 3:04 PM on November 12, 2015 [4 favorites]

Just saw this post and really appreciate all of the comments here. Weighing in on the question of whether to get diagnosed, I went through the process as an adult (after multiple docs saying I had Asperger's but not being equipped for the whole evaluative process). It was very time-consuming, expensive, and I had to go through some people who seemed entirely clueless about the subject to get there. And it pushed every last one of my buttons about the imposition of medical authority to validate personal experience. I feel like it was in fact all worthwhile because I had the resources at the time and it's nice to have this piece of paper in lieu of diplomas I never got, but I would only recommend it if it's not going to impose financial hardship or greater mental stress. I think the ridiculous stigma about self-diagnosis comes primarily from the stupid-ass myth that people go around claiming to be autistic so they can act like Dr. House.

I can't remember what I said the last time this subject came around, but I have a book's worth of feelings on all this (that my therapist occasionally tells me to write, lol). Verbally precocious girls were just not seen as being typically autistic in the '80s (if they are even identified that often now), but I did go through a whole diagnostic carnival that involved Rorschach cards and being told my behavioral difficulties were the result of diabetes (until they actually tested my blood sugar and found I didn't have it, oops!) and eventually came away from the whole thing with a "diagnosis" of profoundly gifted, which didn't make sense or address the social difficulties and allowed me to be stigmatized in a whole new identified-patient way.

I have a million more jumbled feelings and memories about this. The Underpants Monster's comment about fiction and understanding characters better than people: yes, me too; I am decent at cognitively grasping social dynamics entirely because I've spent my life studying the hell out of books and movies. I can write this to you all because you're words on a page and our interaction is limited but would have trouble being this open to my (much-loved!) friends in real life. And Joe in Australia's speculation about sexual assault and harassment affecting ASD girls in additional ways, which is something where the research isn't there enough yet but given enough time I think it will be. I think many ASD women have stories like this (I don't want to get into mine, but they're there) about being in bad situations that were compounded because of not knowing what was normal or who could be trusted or who it was important to not make angry.

Stopping myself before I get into empathy and gender identity, because that's a HUGE can of worms and this is too long. I'm sad I found this thread a little late but glad I still found it. Thanks for everything you've written here, all.
posted by thetortoise at 4:01 AM on November 14, 2015 [8 favorites]

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