Women on the spectrum
July 10, 2015 12:52 PM Subscribe
The Big Open-Ended Question: On Loving and Accepting My Asperger’s
Women are diagnosed with autism at a much lower rate than men, but there is growing concern that this is a result of gender-biased diagnosis criteria, since our criteria are not inclusive of the way that autism manifests in women. Many of these differences seem to arise from the different ways that men and women are socialized, especially with respect to mimicry, special interests, and social interactions:
Compounding the diagnosis issue, western society also tends to be much more forgiving of autism traits in males than in females: "June, whose daughter is now 15, said she believes women with ASD may find themselves at a disadvantage because of their gender. 'There is a lot more tolerance of Asperger's in men than women as they get older. Women are expected to multitask and to meet the needs of other people. It's much more accepted that men can be reclusive and focus on one thing at a time,' she said."
Just for fun, here are some profiles of 14 amazing women with autism.
For years after, I tried to hide who I was and had some success. On the rare occasions when I did disclose my diagnosis, the response would usually be something along the lines of, “Wow, I didn’t know you were autistic!” I always took that as a compliment. After I graduated from college, I got a job and earned a reputation as an excellent employee, who was praised by her superiors and co-workers for her industriousness and attention to detail. But it always ended there. ... Even when I didn’t say anything, even when I just talked about work, I could tell that I still seemed a little odd to most people. A recruiter once told me that I had “an edge” about me, and didn’t really elaborate on what she meant by that. Co-workers told me that I was “too eager” or “forceful.”
Women are diagnosed with autism at a much lower rate than men, but there is growing concern that this is a result of gender-biased diagnosis criteria, since our criteria are not inclusive of the way that autism manifests in women. Many of these differences seem to arise from the different ways that men and women are socialized, especially with respect to mimicry, special interests, and social interactions:
The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not picked up and therefore any social and communication problems they may be having are also overlooked. This sort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.” (Dale Yaull-Smith, 2008)People are raising questions about the misdiagnosis and outright dismissal of women with autism: e.g. the NHS: "Instead, one passed her to the local mental health team for an eating disorder she didn’t have while another said she couldn’t have AS because she had a boyfriend. 'He had to look in a book to check what Asperger syndrome was, and, after glancing down at the page of traits, decided that I was just a nervous person who was afraid of doctors,' she remembers." Many women are misdiagnosed with OCD, bipolar, or borderline personality disorder before being correctly identified as being on the spectrum. This chart of female Asperger's traits from the author of Aspergirls is often cited in conversations among autistic women as a good, if possibly over-inclusive, place to start the process of reconsidering these misdiagnoses.
Compounding the diagnosis issue, western society also tends to be much more forgiving of autism traits in males than in females: "June, whose daughter is now 15, said she believes women with ASD may find themselves at a disadvantage because of their gender. 'There is a lot more tolerance of Asperger's in men than women as they get older. Women are expected to multitask and to meet the needs of other people. It's much more accepted that men can be reclusive and focus on one thing at a time,' she said."
Just for fun, here are some profiles of 14 amazing women with autism.
Oh that is so cool! *swells with mefi pride* Three cheers for bookwibble!
posted by dialetheia at 1:14 PM on July 10, 2015 [1 favorite]
posted by dialetheia at 1:14 PM on July 10, 2015 [1 favorite]
Oh man, do I relate to this:
"While I do have friends today, I don’t have many, in part because I need people to be completely honest with me about whether or not I’ve done or said something wrong, and that is difficult to find."
i can usually pass as pretty neurotypical, mostly by analytically systematizing all my social interactions as best I can, which takes a lot of mental energy compared to most everybody else that just seem to get how other people think or feel most of the time. My husband is more neurotypical than I am, but still has some Aspie traits. It's a given concession to my aspieness in our relationship that I ask him approximately 5 times per day if he is mad/upset/ annoyed with me - because I can't actually tell when people are mad or not mad at me, and for most interactions am mucking my way through, usually assuming the worst, until it becomes 100% obvious either way. I can't stand not knowing whether the person I love is mad at me, so, bless his heart, he tells me no almost every time, and never gets annoyed that I have to ask.
posted by permiechickie at 1:43 PM on July 10, 2015 [33 favorites]
"While I do have friends today, I don’t have many, in part because I need people to be completely honest with me about whether or not I’ve done or said something wrong, and that is difficult to find."
i can usually pass as pretty neurotypical, mostly by analytically systematizing all my social interactions as best I can, which takes a lot of mental energy compared to most everybody else that just seem to get how other people think or feel most of the time. My husband is more neurotypical than I am, but still has some Aspie traits. It's a given concession to my aspieness in our relationship that I ask him approximately 5 times per day if he is mad/upset/ annoyed with me - because I can't actually tell when people are mad or not mad at me, and for most interactions am mucking my way through, usually assuming the worst, until it becomes 100% obvious either way. I can't stand not knowing whether the person I love is mad at me, so, bless his heart, he tells me no almost every time, and never gets annoyed that I have to ask.
posted by permiechickie at 1:43 PM on July 10, 2015 [33 favorites]
It's not too surprising that autism is underdiagnosed in women given how many of the diagnostic tests are based on research by the same guy whose pet theory is that men have systemizing brains and women have empathizing brains and that autism is an example of the "extreme male brain."
When I finally went in to be officially evaluated for Asperger's last year, one of the tests they used was the Empathy Quotient test, which includes such statements as:
- When I was a child, I enjoyed cutting up worms to see what would happen
- If I say something that someone else is offended by, I think that that's their problem, not mine
- I get upset if I see people suffering on news programs
- It upsets me to see an animal in pain
- I usually stay emotionally detached when watching a film
I like fiction and don't like hurting animals or people, so I didn't pass that one, despite four different professionals being sure I have Asperger's, a long history of stereotypy, etc. As a kid, I had to work constantly to adhere to female norms because people expect girls to intuitively interpret emotions and social situations; as an adult, I hear sometimes that I can't be autistic because I have these hard-won skills. It's exhausting.
It'll be a good day when our tools are better than this. Thank you for this post.
posted by thetortoise at 2:13 PM on July 10, 2015 [38 favorites]
When I finally went in to be officially evaluated for Asperger's last year, one of the tests they used was the Empathy Quotient test, which includes such statements as:
- When I was a child, I enjoyed cutting up worms to see what would happen
- If I say something that someone else is offended by, I think that that's their problem, not mine
- I get upset if I see people suffering on news programs
- It upsets me to see an animal in pain
- I usually stay emotionally detached when watching a film
I like fiction and don't like hurting animals or people, so I didn't pass that one, despite four different professionals being sure I have Asperger's, a long history of stereotypy, etc. As a kid, I had to work constantly to adhere to female norms because people expect girls to intuitively interpret emotions and social situations; as an adult, I hear sometimes that I can't be autistic because I have these hard-won skills. It's exhausting.
It'll be a good day when our tools are better than this. Thank you for this post.
posted by thetortoise at 2:13 PM on July 10, 2015 [38 favorites]
i can usually pass as pretty neurotypical, mostly by analytically systematizing all my social interactions as best I can, which takes a lot of mental energy compared to most everybody else that just seem to get how other people think or feel most of the time.
YES! This is the best I've ever seen anyone explain this process, thank you! This leads to a particularly strange phenomenon where I can sometimes sound really insightful and emotionally intelligent when talking about things that happened in the past, once I've had some time to reflect on things - but if you ask me the same questions while it's happening, I'll be lucky if I can remember my own name, much less identify how I'm feeling, much less identify how anyone else is feeling. All of that information has to be processed intellectually before it becomes available to me at all.
I like fiction and don't like hurting animals or people, so I didn't pass that one, despite four different professionals being sure I have Asperger's, a long history of stereotypy, etc. As a kid, I had to work constantly to adhere to female norms because people expect girls to intuitively interpret emotions and social situations; as an adult, I hear sometimes that I can't be autistic because I have these hard-won skills. It's exhausting.
This is so spot-on, especially the part about being told you can't be autistic because you've become too good at compensating - that is 100% my experience as well. I also get the same skepticism because I love fiction and animals; that's one huge reason why I much prefer the emerging Intense World hypothesis, or the idea that autism/Asperger's is based more in an overabundance of overwhelming empathy rather than a deficit.
posted by dialetheia at 2:25 PM on July 10, 2015 [46 favorites]
YES! This is the best I've ever seen anyone explain this process, thank you! This leads to a particularly strange phenomenon where I can sometimes sound really insightful and emotionally intelligent when talking about things that happened in the past, once I've had some time to reflect on things - but if you ask me the same questions while it's happening, I'll be lucky if I can remember my own name, much less identify how I'm feeling, much less identify how anyone else is feeling. All of that information has to be processed intellectually before it becomes available to me at all.
I like fiction and don't like hurting animals or people, so I didn't pass that one, despite four different professionals being sure I have Asperger's, a long history of stereotypy, etc. As a kid, I had to work constantly to adhere to female norms because people expect girls to intuitively interpret emotions and social situations; as an adult, I hear sometimes that I can't be autistic because I have these hard-won skills. It's exhausting.
This is so spot-on, especially the part about being told you can't be autistic because you've become too good at compensating - that is 100% my experience as well. I also get the same skepticism because I love fiction and animals; that's one huge reason why I much prefer the emerging Intense World hypothesis, or the idea that autism/Asperger's is based more in an overabundance of overwhelming empathy rather than a deficit.
posted by dialetheia at 2:25 PM on July 10, 2015 [46 favorites]
""While I do have friends today, I don’t have many, in part because I need people to be completely honest with me about whether or not I’ve done or said something wrong, and that is difficult to find.""
This sounds like my dream office.
posted by rebent at 2:38 PM on July 10, 2015 [5 favorites]
This sounds like my dream office.
posted by rebent at 2:38 PM on July 10, 2015 [5 favorites]
My 9-year-old daughter is autistic, and fortunately we have not encountered outright denial from health care professionals. Still, it is rare enough in girls that she is the only girl in her non-integrated classes, and there are certain approaches her teachers take sometimes that make me question them. I'm grateful for the resources in this thread, to help me navigate these questions. Much appreciated.
posted by Aya Hirano on the Astral Plane at 3:18 PM on July 10, 2015 [5 favorites]
posted by Aya Hirano on the Astral Plane at 3:18 PM on July 10, 2015 [5 favorites]
Oh god, so many feelings about that first piece.
I'm somewhere in the gray middle of "may or may not be on the spectrum, depending who runs the diagnostics." Had an official diagnosis as a kid, went through the therapy/getting awkwardly pulled out of classes ringer, had my diagnosis withdrawn after 4th grade, got completely integrated back into regular-kid classes. I wasn't 100 percent immune to bullying (lots of side-eyes for reading under the desk during other lessons/generally reading when I wasn't "supposed" to), but I had enough friends in my hometown to get by, and an even better support network all up and down the east coast thanks to this life-changing summer nerd camp. College was even better; big ups to my little weirdo women's college for being a haven for oddballs of all stripes.
Then I got my first job after school, an AmeriCorps at a teeny little outreach organization. And suddenly I had this boss who turned all of my aspie-like traits into reasons to doubt my overall mental health. I clearly lacked emotional regulation because I didn't have a sufficiently sad expression on my face when my coworker derscribed a stressful situation in her life. There was "something off" about me from my very first job interview, and that would show up in every aspect of my life, and I should be so grateful to her for taking me on anyway. Had I ever had problems with housemates or co-workers before, because clearly I was doing something wrong, and maybe they were just kind enough not to tell me anything. Oh, and by the way, did I ever have an autism diagnosis?
I called my mom, verified that my diagnosis had been lifted, and reported back. My boss said "oh, it was the eighties, there was a lot of pressure then for kids to be seen as 'normal.' " I was defective anyway and my mom's testimony didn't count. Point taken. I quit two months later.
Years later, I was thinking about why this period still stands out in my mind so much, and why my boss' words hurt so much more than any other bully I'd been up against up to that point. And it occurred to me that, by attacking things like my empathy and my ability to produce sympathetic facial expressions, it felt like she was telling me "you aren't good at being a woman." This was compounded by the fact that all the self-identified aspie men I'd met up to that point were benignly awkward and didn't share my interests at best, outright misogynist at worst. (I've met very nice autistic men since then, #notallaspies and all that, but my first impressions were not good.)
Somewhere in that time frame as well, I read this NYT magazine piece about autistic women. While I appreciated how they profiled autistic girls without the stereotypical STEM interests, the 20somethings they mentioned even briefly all seemed to have lives ruled by anxiety, or be unable to work. Instead of reassuring me that there were other people "like me" out there, it sent me into a deep panic. Honestly, I spent a good three or four years like that, solidly convinced that I was too awkward to function in this world.
These days I'm in school for nursing, which is about as stereotypically feminine and hyper-empathetic as you can get. My friends tell me I give great, perceptive advice. My patients at the hospital express gratitude that I'm there.
But I got to this point via a fuckton of personal work after that first job. Reading AskMe posts about what to say to people who are depressed, or reeling from the aftermath of severe tragedies. Cultivating a mental list of expressions of empathy. Letting other people talk first. (This one works great for friends in crisis who need to vent, less well when confronted with men from okcupid who want to monologue about their accomplishments.) Doing lots of volunteering with people in very different educational/socioeconomic brackets from me, and learning to small talk with them despite nothing superficially in common. All of these things I did in response to terrible gaslighting.
It still pisses me off to no end that "awkward" men, autistic or not, will never feel pressured to work on their empathy the way I did. That they can say horrible misogynist things, never be chastised for misreading workplace social politics, fail to acknowledge people when they enter a room, talk about themselves first in a conversation and be read as smart and confident and not overbearing.
I will never stop being angry about that.
posted by ActionPopulated at 4:23 PM on July 10, 2015 [101 favorites]
I'm somewhere in the gray middle of "may or may not be on the spectrum, depending who runs the diagnostics." Had an official diagnosis as a kid, went through the therapy/getting awkwardly pulled out of classes ringer, had my diagnosis withdrawn after 4th grade, got completely integrated back into regular-kid classes. I wasn't 100 percent immune to bullying (lots of side-eyes for reading under the desk during other lessons/generally reading when I wasn't "supposed" to), but I had enough friends in my hometown to get by, and an even better support network all up and down the east coast thanks to this life-changing summer nerd camp. College was even better; big ups to my little weirdo women's college for being a haven for oddballs of all stripes.
Then I got my first job after school, an AmeriCorps at a teeny little outreach organization. And suddenly I had this boss who turned all of my aspie-like traits into reasons to doubt my overall mental health. I clearly lacked emotional regulation because I didn't have a sufficiently sad expression on my face when my coworker derscribed a stressful situation in her life. There was "something off" about me from my very first job interview, and that would show up in every aspect of my life, and I should be so grateful to her for taking me on anyway. Had I ever had problems with housemates or co-workers before, because clearly I was doing something wrong, and maybe they were just kind enough not to tell me anything. Oh, and by the way, did I ever have an autism diagnosis?
I called my mom, verified that my diagnosis had been lifted, and reported back. My boss said "oh, it was the eighties, there was a lot of pressure then for kids to be seen as 'normal.' " I was defective anyway and my mom's testimony didn't count. Point taken. I quit two months later.
Years later, I was thinking about why this period still stands out in my mind so much, and why my boss' words hurt so much more than any other bully I'd been up against up to that point. And it occurred to me that, by attacking things like my empathy and my ability to produce sympathetic facial expressions, it felt like she was telling me "you aren't good at being a woman." This was compounded by the fact that all the self-identified aspie men I'd met up to that point were benignly awkward and didn't share my interests at best, outright misogynist at worst. (I've met very nice autistic men since then, #notallaspies and all that, but my first impressions were not good.)
Somewhere in that time frame as well, I read this NYT magazine piece about autistic women. While I appreciated how they profiled autistic girls without the stereotypical STEM interests, the 20somethings they mentioned even briefly all seemed to have lives ruled by anxiety, or be unable to work. Instead of reassuring me that there were other people "like me" out there, it sent me into a deep panic. Honestly, I spent a good three or four years like that, solidly convinced that I was too awkward to function in this world.
These days I'm in school for nursing, which is about as stereotypically feminine and hyper-empathetic as you can get. My friends tell me I give great, perceptive advice. My patients at the hospital express gratitude that I'm there.
But I got to this point via a fuckton of personal work after that first job. Reading AskMe posts about what to say to people who are depressed, or reeling from the aftermath of severe tragedies. Cultivating a mental list of expressions of empathy. Letting other people talk first. (This one works great for friends in crisis who need to vent, less well when confronted with men from okcupid who want to monologue about their accomplishments.) Doing lots of volunteering with people in very different educational/socioeconomic brackets from me, and learning to small talk with them despite nothing superficially in common. All of these things I did in response to terrible gaslighting.
It still pisses me off to no end that "awkward" men, autistic or not, will never feel pressured to work on their empathy the way I did. That they can say horrible misogynist things, never be chastised for misreading workplace social politics, fail to acknowledge people when they enter a room, talk about themselves first in a conversation and be read as smart and confident and not overbearing.
I will never stop being angry about that.
posted by ActionPopulated at 4:23 PM on July 10, 2015 [101 favorites]
Fantastic post.
I read the Toast post yesterday and identified straight down the line. I score pretty high on the Baron-Cohen AQ test but like many women (and the Toast post author) I spend a lot of time dissecting interactions after the fact and I'm much more likely to obsess about themes in the film I just saw than anything STEM related. (My job is in STEM, though, so go figure.)
posted by Sheydem-tants at 6:39 PM on July 10, 2015 [3 favorites]
I read the Toast post yesterday and identified straight down the line. I score pretty high on the Baron-Cohen AQ test but like many women (and the Toast post author) I spend a lot of time dissecting interactions after the fact and I'm much more likely to obsess about themes in the film I just saw than anything STEM related. (My job is in STEM, though, so go figure.)
posted by Sheydem-tants at 6:39 PM on July 10, 2015 [3 favorites]
I am amazed at how many traits in that first chart I have. All but four. I have never considered that I could have anything wrong (not quite the right word) with me other than being generally weird and somehow "broken" but it would explain so many things.
posted by ninazer0 at 7:34 PM on July 10, 2015 [3 favorites]
posted by ninazer0 at 7:34 PM on July 10, 2015 [3 favorites]
When I finally went in to be officially evaluated for Asperger's last year, one of the tests they used was the Empathy Quotient test, which includes such statements as:
- When I was a child, I enjoyed cutting up worms to see what would happen
- If I say something that someone else is offended by, I think that that's their problem, not mine
- I get upset if I see people suffering on news programs
- It upsets me to see an animal in pain
- I usually stay emotionally detached when watching a film
I like fiction and don't like hurting animals or people, so I didn't pass that one, despite four different professionals being sure I have Asperger's, a long history of stereotypy, etc.
There is an emerging distinction between "hot" or "affective" and "cold" or "cognitive" empathy. Affective empathy is, like, feeling others' pain. Cognitive empathy is being able to prospectively model others' beliefs and intentions.
The thought is that autistic people have normal affective empathy, but deficits in cognitive empathy. From this perspective, the diagnostic questions are off-base -- they test affective empathy rather than cognitive empathy. Similar statements pitched to cognitive empathy might include, I am often surprised when my actions hurt someone's feelings.
See.
posted by grobstein at 9:08 PM on July 10, 2015 [24 favorites]
- When I was a child, I enjoyed cutting up worms to see what would happen
- If I say something that someone else is offended by, I think that that's their problem, not mine
- I get upset if I see people suffering on news programs
- It upsets me to see an animal in pain
- I usually stay emotionally detached when watching a film
I like fiction and don't like hurting animals or people, so I didn't pass that one, despite four different professionals being sure I have Asperger's, a long history of stereotypy, etc.
There is an emerging distinction between "hot" or "affective" and "cold" or "cognitive" empathy. Affective empathy is, like, feeling others' pain. Cognitive empathy is being able to prospectively model others' beliefs and intentions.
The thought is that autistic people have normal affective empathy, but deficits in cognitive empathy. From this perspective, the diagnostic questions are off-base -- they test affective empathy rather than cognitive empathy. Similar statements pitched to cognitive empathy might include, I am often surprised when my actions hurt someone's feelings.
See.
posted by grobstein at 9:08 PM on July 10, 2015 [24 favorites]
Thanks for posting this, dialetheia, and thanks to bookwibble for writing the article in the main link.
Another female-assigned, on-the-spectrum person here, who doesn't have a diagnosis despite the efforts of my mum to get me assessed for it, because I didn't cause enough trouble at school for them to be interested. I mean, lots of trouble was caused for me, but I kept my head down so apparently that was okay.
There's no way to be sure without a time machine, of course, but I believe that if I'd got a diagnosis before I went to uni, I would have had more resources (internal and external) to draw on when things got really hard for me there.
permachickie: It's a given concession to my aspieness in our relationship that I ask him approximately 5 times per day if he is mad/upset/ annoyed with me - because I can't actually tell when people are mad or not mad at me, and for most interactions am mucking my way through, usually assuming the worst, until it becomes 100% obvious either way.
Me too! Actually, both me and Mr. daisyk do this. It is fantastic to be in a relationship where I can be completely open about all the social metacognition I (have to) do and be understood.
ActionPopulated: And it occurred to me that, by attacking things like my empathy and my ability to produce sympathetic facial expressions, it felt like she was telling me "you aren't good at being a woman."
ActionPopulated, everything in your comment resonated very strongly with me, but this especially did. I went to an all-girls high school and, while it was generally a good school and there were advantages to that for me, the sense of alienation I felt from my female peers was ... not one of them. If I start talking about the interactions between my autism-spectrum-ness and my (non-binary) gender identity, I'll be here all day, so I'll just mention that they definitely exist. (Funny that I came to this thread right after commenting elsewhere that I don't talk about my gender or sexuality with my therapist because they're probably not relevant. She actually doesn't believe I have Asperger syndrome (which is still called that in Europe) either, but she did give me a referral to somewhere that can test me for it. I've been sitting on that for a while, wondering what I should do.)
I am not going to comment more for now because I don't want to open a huge can of emotional worms in myself -- I have stuff to do today. Also because I apparently have long-comment-itis today and don't want to dominate the conversation! But I wanted to check into the thread and be in the same space as a bunch of people in the same situation as me.
posted by daisyk at 4:27 AM on July 11, 2015 [7 favorites]
Another female-assigned, on-the-spectrum person here, who doesn't have a diagnosis despite the efforts of my mum to get me assessed for it, because I didn't cause enough trouble at school for them to be interested. I mean, lots of trouble was caused for me, but I kept my head down so apparently that was okay.
There's no way to be sure without a time machine, of course, but I believe that if I'd got a diagnosis before I went to uni, I would have had more resources (internal and external) to draw on when things got really hard for me there.
permachickie: It's a given concession to my aspieness in our relationship that I ask him approximately 5 times per day if he is mad/upset/ annoyed with me - because I can't actually tell when people are mad or not mad at me, and for most interactions am mucking my way through, usually assuming the worst, until it becomes 100% obvious either way.
Me too! Actually, both me and Mr. daisyk do this. It is fantastic to be in a relationship where I can be completely open about all the social metacognition I (have to) do and be understood.
ActionPopulated: And it occurred to me that, by attacking things like my empathy and my ability to produce sympathetic facial expressions, it felt like she was telling me "you aren't good at being a woman."
ActionPopulated, everything in your comment resonated very strongly with me, but this especially did. I went to an all-girls high school and, while it was generally a good school and there were advantages to that for me, the sense of alienation I felt from my female peers was ... not one of them. If I start talking about the interactions between my autism-spectrum-ness and my (non-binary) gender identity, I'll be here all day, so I'll just mention that they definitely exist. (Funny that I came to this thread right after commenting elsewhere that I don't talk about my gender or sexuality with my therapist because they're probably not relevant. She actually doesn't believe I have Asperger syndrome (which is still called that in Europe) either, but she did give me a referral to somewhere that can test me for it. I've been sitting on that for a while, wondering what I should do.)
I am not going to comment more for now because I don't want to open a huge can of emotional worms in myself -- I have stuff to do today. Also because I apparently have long-comment-itis today and don't want to dominate the conversation! But I wanted to check into the thread and be in the same space as a bunch of people in the same situation as me.
posted by daisyk at 4:27 AM on July 11, 2015 [7 favorites]
grobstein, thanks for pointing out the distinction between cognitive and affective empathy. It's a significant one. (I read my comment over again and realized it sounds really simplistic. I don't mean to moralize about the right way to experience empathy or react to suffering. I just think the EQ is a pretty lousy diagnostic tool.)
This post and thread is like water in the desert for somebody who has felt weighed down by these experiences. Asperger's has been this thing that has influenced my life hugely, for good and for ill, and because of the stigma and not fitting the media stereotype and sooooo much internal baggage, I hate bringing it up. So I'm just like, thank God, I'm not alone. daisyk, I'd love to read your thoughts on autism and non-binary gender if you feel like writing them at any point, by the way.
posted by thetortoise at 6:35 AM on July 11, 2015 [8 favorites]
This post and thread is like water in the desert for somebody who has felt weighed down by these experiences. Asperger's has been this thing that has influenced my life hugely, for good and for ill, and because of the stigma and not fitting the media stereotype and sooooo much internal baggage, I hate bringing it up. So I'm just like, thank God, I'm not alone. daisyk, I'd love to read your thoughts on autism and non-binary gender if you feel like writing them at any point, by the way.
posted by thetortoise at 6:35 AM on July 11, 2015 [8 favorites]
Not meant critically, thetortoise. I think you're right. Thanks for your comments!
posted by grobstein at 6:48 AM on July 11, 2015
posted by grobstein at 6:48 AM on July 11, 2015
The chart in particular was quite interesting to me - and as you said rather overinclusive (women with Asperger's gravitate to music, art, science, writing or languages? Just about anything then really?) I am dyspraxic, which I know is comorbid with spectrum disorders and some of the items on the list (eg. sensory overload, need for control and rules, hatred of injustice) are so me, and others are just the complete opposite, eg "stimming", not going out much, dislike of girly things"). I've always kind of empathised with people on the autistic spectrum and thought that sometimes the way they see things makes more sense than the way neurotypical people see things. Maybe this is because I have more in common with them than I realised!
posted by intensitymultiply at 7:26 AM on July 11, 2015 [1 favorite]
posted by intensitymultiply at 7:26 AM on July 11, 2015 [1 favorite]
I was diagnosed as autistic when I was seven years old. That was back in the 70s, so I don't know (or actually care) what the diagnostic criteria were at the time.
Obviously, I was pretty high functioning, though. I didn't have verbal deficits. I didn't talk a lot, but I was articulate and I think one of the reasons they took me in for evaluation was because of hypergraphia. But I'd get kind of overloaded, and often had difficulty understanding and mimicking certain social behaviors and stuff like that. That was just something I needed to learn more explicitly and intentionally, though, because I guess I didn't absorb it naturally the way some people do.
(In a way, I see it sort of the way I do non-native speakers. If you learn a language after a certain age, you can still become fluent in it, but you learn it more intentionally, based on prescriptive rules and explicit observations, and it just takes a little longer to get comfortable with it. Which is why non-native speakers are often better at identifying and articulating the features of languages they learned as adults than native speakers are. Because they know the rules, rather than just having absorbed and internalized them.)
There were definitely some weird expectations and social roles that were more difficult because I was a girl, though. Girls are soooo heavily socialized to be socialized that girls and even grown women are often nearly totally oblivious to their socialization.
Neurotypical women can tend toward a lot of the same sorts of blindness that other mainstream groups, like men or white people, get. They have internalized their default status and their 'normalcy' to the point that they start to perceive anything outside of it as being some sort of failed implementation of them.
Because I know that's a weird and kind of abstract thing, an example: When I was thirteen years old, my family moved halfway across the country about two weeks before I was to start high school. I was very very far out of my element, and had very little time to acclimate, so my parents took me to this new student orientation at the school where they had older students acting as sort of advisors to show you stuff and answer questions. So I asked the girl I'd been assigned a very simple question: How do people dress on the first day of school? I knew this varied by school, and I knew there would be all sorts of rules for it because there always are. She was oblivious, though. She did that thing where people blow smoke up your ass about how all you have to do is be yourself and follow your bliss and do whatever makes you happy. Which, of course, is bullshit. There are rules, there are guidelines, there are shittons of semiotic markers, and all I wanted to know is how I could sort of fly in under the radar for my first goddamned day of school. And she wouldn't fucking tell me.
So I showed up in jeans and a t-shirt and loose unstyled hair, which marked me as what they called a 'freak' at that school. Basically a pothead who skips classes, so day one, and I'm a delinquent. Thanks, asshole! (Yeah, I know she was still just a kid herself, and she was just oblivious to the rules she'd internalized, but she also huge asshole, and in a pretty explicitly neurotypical way.)
Internalizing weird semiotic rules like that is not just a teenaged thing, either. If anything, adults are worse, and due to the constant socialization, neurotypical adult women can often be the worst of the worst.
For a perfect example, women like the one here right here in this thread:
Then I got my first job after school, an AmeriCorps at a teeny little outreach organization. And suddenly I had this boss who turned all of my aspie-like traits into reasons to doubt my overall mental health. I clearly lacked emotional regulation because I didn't have a sufficiently sad expression on my face when my coworker derscribed a stressful situation in her life. There was "something off" about me from my very first job interview, and that would show up in every aspect of my life, and I should be so grateful to her for taking me on anyway. Had I ever had problems with housemates or co-workers before, because clearly I was doing something wrong, and maybe they were just kind enough not to tell me anything. Oh, and by the way, did I ever have an autism diagnosis?
It is just absurd that anyone would be so grossly lacking in social competence and basic self awareness that she could be accusing another person of social ineptness in such a fundamentally socially inept way.
She's being intrusive, insensitive, rude, hostile, and completely lacking in empathy, and it never even occurs to her that HER failure to understand another person and communicate with them effectively might have anything to do with her own deficits, rather than the other person's.
There is something wrong with the woman who did that, and the thing that is wrong with her is a very common thing wrong with neurotypical people. They actually believe their self-centered projection is a type of empathy, even though it is pretty much the opposite. They perceive others' behaviors in terms of their own, and they pathologize things based on how different they are from them.
Their concern and their supposedly well meaning, unsolicited advice is always predicated on the notion that they are some sort of ideal. They try to instruct you in how to become more like them. But those people are assholes. They're loud, annoying, intrusive, and just bone ignorant even about their own behaviors. I do not aspire to be more like those people.
And that is why, generally, I do not identify as autistic or neuroatypical now. I mean, I am still that person, but unless you understand and acknowledge your dysfunctional allistic traits, you don't get to act like you're making special accommodations for my special needs or whatever.
I don't like loud, repetitive noises. I don't like superfluous distress signals and emotional outbursts. I don't like people intruding on my personal space, physically or otherwise. But I have accommodated that all my life, and I'm done accommodating. Don't pass this off as me having sensory integration issues if you're the one being invasive like that. At this point, it's just you being an asshole and a creep.
If you are being noisy and intrusive and violating my space, physical or otherwise, even after I've spent my life accommodating you and people like you and adjusting my tolerance levels to accommodate your behaviors, you are the one who has a problem. You know who knows not to do shit like bang on a table or shout in my face for attention, emphasis, or to express enthusiasm? My dogs, even the kinda naughty one. Some allistic people I know don't know that.
Why don't you respect others' space? Why are you so bad at reading people? (I am a person, you know.) Why can't you control yourself and behave appropriately and take others into consideration? Why do you seem to require such constant, unremitting background noise everywhere you go? Why do you feel so comfortable making weird assumptions about other people's motivations and perceptions? Why do you so casually come up with baroque and dramatic backstories for everything? And why are they always wrong?
And who the fuck are you to accuse me of lacking empathy, when you're the one completely failing to even acknowledge, much less respect, anyone unlike you?
Allistic, heal thyself.
posted by ernielundquist at 10:23 AM on July 11, 2015 [46 favorites]
Obviously, I was pretty high functioning, though. I didn't have verbal deficits. I didn't talk a lot, but I was articulate and I think one of the reasons they took me in for evaluation was because of hypergraphia. But I'd get kind of overloaded, and often had difficulty understanding and mimicking certain social behaviors and stuff like that. That was just something I needed to learn more explicitly and intentionally, though, because I guess I didn't absorb it naturally the way some people do.
(In a way, I see it sort of the way I do non-native speakers. If you learn a language after a certain age, you can still become fluent in it, but you learn it more intentionally, based on prescriptive rules and explicit observations, and it just takes a little longer to get comfortable with it. Which is why non-native speakers are often better at identifying and articulating the features of languages they learned as adults than native speakers are. Because they know the rules, rather than just having absorbed and internalized them.)
There were definitely some weird expectations and social roles that were more difficult because I was a girl, though. Girls are soooo heavily socialized to be socialized that girls and even grown women are often nearly totally oblivious to their socialization.
Neurotypical women can tend toward a lot of the same sorts of blindness that other mainstream groups, like men or white people, get. They have internalized their default status and their 'normalcy' to the point that they start to perceive anything outside of it as being some sort of failed implementation of them.
Because I know that's a weird and kind of abstract thing, an example: When I was thirteen years old, my family moved halfway across the country about two weeks before I was to start high school. I was very very far out of my element, and had very little time to acclimate, so my parents took me to this new student orientation at the school where they had older students acting as sort of advisors to show you stuff and answer questions. So I asked the girl I'd been assigned a very simple question: How do people dress on the first day of school? I knew this varied by school, and I knew there would be all sorts of rules for it because there always are. She was oblivious, though. She did that thing where people blow smoke up your ass about how all you have to do is be yourself and follow your bliss and do whatever makes you happy. Which, of course, is bullshit. There are rules, there are guidelines, there are shittons of semiotic markers, and all I wanted to know is how I could sort of fly in under the radar for my first goddamned day of school. And she wouldn't fucking tell me.
So I showed up in jeans and a t-shirt and loose unstyled hair, which marked me as what they called a 'freak' at that school. Basically a pothead who skips classes, so day one, and I'm a delinquent. Thanks, asshole! (Yeah, I know she was still just a kid herself, and she was just oblivious to the rules she'd internalized, but she also huge asshole, and in a pretty explicitly neurotypical way.)
Internalizing weird semiotic rules like that is not just a teenaged thing, either. If anything, adults are worse, and due to the constant socialization, neurotypical adult women can often be the worst of the worst.
For a perfect example, women like the one here right here in this thread:
Then I got my first job after school, an AmeriCorps at a teeny little outreach organization. And suddenly I had this boss who turned all of my aspie-like traits into reasons to doubt my overall mental health. I clearly lacked emotional regulation because I didn't have a sufficiently sad expression on my face when my coworker derscribed a stressful situation in her life. There was "something off" about me from my very first job interview, and that would show up in every aspect of my life, and I should be so grateful to her for taking me on anyway. Had I ever had problems with housemates or co-workers before, because clearly I was doing something wrong, and maybe they were just kind enough not to tell me anything. Oh, and by the way, did I ever have an autism diagnosis?
It is just absurd that anyone would be so grossly lacking in social competence and basic self awareness that she could be accusing another person of social ineptness in such a fundamentally socially inept way.
She's being intrusive, insensitive, rude, hostile, and completely lacking in empathy, and it never even occurs to her that HER failure to understand another person and communicate with them effectively might have anything to do with her own deficits, rather than the other person's.
There is something wrong with the woman who did that, and the thing that is wrong with her is a very common thing wrong with neurotypical people. They actually believe their self-centered projection is a type of empathy, even though it is pretty much the opposite. They perceive others' behaviors in terms of their own, and they pathologize things based on how different they are from them.
Their concern and their supposedly well meaning, unsolicited advice is always predicated on the notion that they are some sort of ideal. They try to instruct you in how to become more like them. But those people are assholes. They're loud, annoying, intrusive, and just bone ignorant even about their own behaviors. I do not aspire to be more like those people.
And that is why, generally, I do not identify as autistic or neuroatypical now. I mean, I am still that person, but unless you understand and acknowledge your dysfunctional allistic traits, you don't get to act like you're making special accommodations for my special needs or whatever.
I don't like loud, repetitive noises. I don't like superfluous distress signals and emotional outbursts. I don't like people intruding on my personal space, physically or otherwise. But I have accommodated that all my life, and I'm done accommodating. Don't pass this off as me having sensory integration issues if you're the one being invasive like that. At this point, it's just you being an asshole and a creep.
If you are being noisy and intrusive and violating my space, physical or otherwise, even after I've spent my life accommodating you and people like you and adjusting my tolerance levels to accommodate your behaviors, you are the one who has a problem. You know who knows not to do shit like bang on a table or shout in my face for attention, emphasis, or to express enthusiasm? My dogs, even the kinda naughty one. Some allistic people I know don't know that.
Why don't you respect others' space? Why are you so bad at reading people? (I am a person, you know.) Why can't you control yourself and behave appropriately and take others into consideration? Why do you seem to require such constant, unremitting background noise everywhere you go? Why do you feel so comfortable making weird assumptions about other people's motivations and perceptions? Why do you so casually come up with baroque and dramatic backstories for everything? And why are they always wrong?
And who the fuck are you to accuse me of lacking empathy, when you're the one completely failing to even acknowledge, much less respect, anyone unlike you?
Allistic, heal thyself.
posted by ernielundquist at 10:23 AM on July 11, 2015 [46 favorites]
Thanks for the great round up of articles. I don't know if I would be officially diagnosed as on the spectrum, but I do know that I realized around age 16 that I was missing a lot of information in social encounters that seemed to be obvious to other people, and I've been working hard ever since to try and make up that deficit.
There were things I'd been doing already that were probably helping me pass just a little bit: I was always a bookworm with a fondness for fiction, and I started keeping a journal when I was 12, so I recorded all sorts of encounters and then analyzed them afterwards--these things were always clearer in retrospect somehow--which helped me a bit with navigating new social encounters. But once I realized that there were these huge gaps in what I saw and understood in social situations, I started reading etiquette books and books from the seventies about body language and what it all meant, which led to my mom giving me a copy of Miss Manners' Guide to Excruciatingly Correct Behavior. Out of all the things I'd read up until that point, Miss Manners helped the most, but it didn't help me read facial expressions any better.
And then a couple of years later, I stumbled across the Television Without Pity recaps and realized they were--unintentionally--like "The Alien's Guide to Human Emotions," which was exactly what I needed. Because in the course of a recap, the recapper would usually mention various characters' emotional states, which I had usually missed or not totally understood. But because it was all on television, I could go back and watch it again with my new knowledge. Dean is upset and scared and trying not to cry in that scene: THAT is what it looks like when a guy is upset and scared and trying not to cry.
And after that, I stumbled across Metafilter and AskMe in particular, which has given me a glimpse into what other people are thinking. I used to sort of forget on a fairly regular basis that other people were thinking things behind their eyes; I forget that less often now. AskMe has also helped elucidate what other people's expectations are for a lot of different social occasions, which has also been enormously helpful. I learned how to flirt by reading the SIRC guide to flirting and by reading hundreds of AskMe dating questions.
Even thinking about all of that again is exhausting, particularly because there was so much blind fumbling involved, looking for things that would help me when I didn't even know what exactly I was looking for. And because that whole time I guess I seemed like I was doing okay (especially in comparison to my brother who is also like me, I think, but who was not trying to fill in the gaps in his knowledge like I was doing), it never even seemed to occur to the adults in my life to ask if I needed any help.
The idea that a lot of people don't have to do any of that work because it all just comes naturally to them makes me want to climb up on my roof and howl like a coyote at the moon.
posted by colfax at 7:16 AM on July 12, 2015 [27 favorites]
There were things I'd been doing already that were probably helping me pass just a little bit: I was always a bookworm with a fondness for fiction, and I started keeping a journal when I was 12, so I recorded all sorts of encounters and then analyzed them afterwards--these things were always clearer in retrospect somehow--which helped me a bit with navigating new social encounters. But once I realized that there were these huge gaps in what I saw and understood in social situations, I started reading etiquette books and books from the seventies about body language and what it all meant, which led to my mom giving me a copy of Miss Manners' Guide to Excruciatingly Correct Behavior. Out of all the things I'd read up until that point, Miss Manners helped the most, but it didn't help me read facial expressions any better.
And then a couple of years later, I stumbled across the Television Without Pity recaps and realized they were--unintentionally--like "The Alien's Guide to Human Emotions," which was exactly what I needed. Because in the course of a recap, the recapper would usually mention various characters' emotional states, which I had usually missed or not totally understood. But because it was all on television, I could go back and watch it again with my new knowledge. Dean is upset and scared and trying not to cry in that scene: THAT is what it looks like when a guy is upset and scared and trying not to cry.
And after that, I stumbled across Metafilter and AskMe in particular, which has given me a glimpse into what other people are thinking. I used to sort of forget on a fairly regular basis that other people were thinking things behind their eyes; I forget that less often now. AskMe has also helped elucidate what other people's expectations are for a lot of different social occasions, which has also been enormously helpful. I learned how to flirt by reading the SIRC guide to flirting and by reading hundreds of AskMe dating questions.
Even thinking about all of that again is exhausting, particularly because there was so much blind fumbling involved, looking for things that would help me when I didn't even know what exactly I was looking for. And because that whole time I guess I seemed like I was doing okay (especially in comparison to my brother who is also like me, I think, but who was not trying to fill in the gaps in his knowledge like I was doing), it never even seemed to occur to the adults in my life to ask if I needed any help.
The idea that a lot of people don't have to do any of that work because it all just comes naturally to them makes me want to climb up on my roof and howl like a coyote at the moon.
posted by colfax at 7:16 AM on July 12, 2015 [27 favorites]
ernielundquist: Why don't you respect others' space? Why are you so bad at reading people? (I am a person, you know.) Why can't you control yourself and behave appropriately and take others into consideration? Why do you seem to require such constant, unremitting background noise everywhere you go? Why do you feel so comfortable making weird assumptions about other people's motivations and perceptions? Why do you so casually come up with baroque and dramatic backstories for everything? And why are they always wrong?
As a "neurotypical*" male person, am I wrong to simply write these people off as entitled jerks? They got through school, accepted that they fit into whatever middle-class occupation or social structure was offered, and carried on from there. Like in The Matrix, society rewards those who are compliant and respect the status quo. Whether it's because they're smart enough to conceal their real intentions, or average enough to accept and go along - is there a difference? They accept that because they exist, everything must be ok, so what's the problem? On the other hand I don't really expect anything from them on a persona level, but I'm trying to understand if I should care about them in more than an abstract way. (I'm lucky enough to be in a long-term relationship...)
Am I talking about something different?
If not, would it be wrong to say that a lot of people seem to have been raised by TV? What you describe is the behaviour of the people on sitcoms like Friends. Or maybe TV is a more accurate reflection of life than I give it credit for.
*although the linked table describes many of my behaviours fairly well, so who knows?
posted by sneebler at 12:28 PM on July 12, 2015
As a "neurotypical*" male person, am I wrong to simply write these people off as entitled jerks? They got through school, accepted that they fit into whatever middle-class occupation or social structure was offered, and carried on from there. Like in The Matrix, society rewards those who are compliant and respect the status quo. Whether it's because they're smart enough to conceal their real intentions, or average enough to accept and go along - is there a difference? They accept that because they exist, everything must be ok, so what's the problem? On the other hand I don't really expect anything from them on a persona level, but I'm trying to understand if I should care about them in more than an abstract way. (I'm lucky enough to be in a long-term relationship...)
Am I talking about something different?
If not, would it be wrong to say that a lot of people seem to have been raised by TV? What you describe is the behaviour of the people on sitcoms like Friends. Or maybe TV is a more accurate reflection of life than I give it credit for.
*although the linked table describes many of my behaviours fairly well, so who knows?
posted by sneebler at 12:28 PM on July 12, 2015
I've been thinking about this a lot, especially because I read a recent article about autistic children and how they "beat it," and a discussion of neuroatypical activism. Their experiences of rigorously learning social rules and practicing it enough echoed my experiences, and I remember my childhood of being mute, along with many other aspects that were recorded on the female Aspies' chart. I have always used the internet to google for every single social situation, and I still read AskMeFi for every single question I can have on navigating social situations. I played online games to practice my socialization. It's a sensitivity rulebook.
The thing is, I don't even know how to view myself in this spectrum anymore. I feel inclined to not recognize myself on it, until I leave and go to the 'real world' with all of its bigotry. Through my activist and social justice work, I had incredible amounts of practice in many different complex social spheres, combined with huge inclusitivity of neuroatypical people. I'm also still in university, and tend to hang around with my other intense, awesome weirdo friends. I don't want to be appropriative, but still...I'm not sure what to think.
Society itself is too normal to handle us, and that's when it gets awful :(
posted by yueliang at 1:58 PM on July 12, 2015 [4 favorites]
The thing is, I don't even know how to view myself in this spectrum anymore. I feel inclined to not recognize myself on it, until I leave and go to the 'real world' with all of its bigotry. Through my activist and social justice work, I had incredible amounts of practice in many different complex social spheres, combined with huge inclusitivity of neuroatypical people. I'm also still in university, and tend to hang around with my other intense, awesome weirdo friends. I don't want to be appropriative, but still...I'm not sure what to think.
Society itself is too normal to handle us, and that's when it gets awful :(
posted by yueliang at 1:58 PM on July 12, 2015 [4 favorites]
I used to sort of forget on a fairly regular basis that other people were thinking things behind their eyes
This. So much this.
posted by gakiko at 1:51 AM on July 13, 2015
This. So much this.
posted by gakiko at 1:51 AM on July 13, 2015
This article crossed my radar today, thought it might be of interest in this conversation. It's about a new novel about a girl with autism, written as a group project by the students of a school for girls with autism. Touches on some of the issues here about girls presenting differently and being diagnosed differently.
posted by Stacey at 6:47 AM on July 14, 2015 [2 favorites]
posted by Stacey at 6:47 AM on July 14, 2015 [2 favorites]
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