What Would You Tell a Teenage Girl with Autism?

Sharon daVanport's blog, Spectrumy, has this guest post from Shana Nichols, a psychologist who specializes in helping girls with autism cope with the social and emotional challenges of adolescence:

I am currently writing a companion book [to her earlier work, Girls Growing Up on
the Autism Spectrum] for pre-teen and teen girls themselves to read titled A Girl's Guide to Growing Up on the Autism Spectrum. My co-author, Brigid Rankowski, is a college student with AS. This book is under contract with Jessica Kingsley Publishers, and at this time we are looking for short contributions from girls and women.

If you (as an adult on the spectrum) or your daughter would be interested in sharing an experience, or advice related to growing up as a female with an ASD, I would love to hear from you. We are looking for 50-200 word narratives about any topic related to growing up. Some examples include:

• What it's like being a girl/woman with an ASD
• Puberty
• Having your period; gynecological exams
• Getting a first bra
• Friendships and mean girls; bullying; fitting in
• Eating issues
• Self-esteem and feeling good about yourself
• Being true to who you are
• Mood and anxiety
• Sexuality
• Relationships and dating
• Media, popularity
• Life goals and pursuing your dreams
• Special interests

We are also interested in poetry and possibly art work.

I like this project --- especially when we're that young, there's so much we know but can't articulate about how we're different, particularly the growing suspicion that certain things that are very, very hard for us are as simple as breathing to most people, and thus that most people can't even tell we're struggling, because what could we possibly be struggling with? It might be helpful to have stuff written down by adults who've already figured out ways to cope with some of the really thorny, hard-to-name problems like inertia, executive dysfunction, sensory hypersensitivities, etc. Even if the solutions they describe aren't practical for the young person reading the book, they can at least show the essay to their parents and say, "See this? The problem she talks about? I have it, too."

I know I had to wait a very long time before I could describe most of the things that now seem to matter a great deal to me, and greatly affect my day-to-day welfare.

I'm not sure to what extent a guidebook written by autistic adults/other adolescents would've helped me, though, because many of my biggest problems either had little or nothing to do with autism (example: chronic, recurring nausea and other gastrointestinal issues) or my solutions to the problem required a freedom to arrange my life around my body's own needs and rhythms that most teenagers don't have (example: if I can wait a few hours before eating anything, I'll have a lot fewer problems than if I have to wake up, eat, and rush out the door). (As you can see from my choice of examples, sometimes both of those things are true at the same time).

I would also not have much, if anything, to say about many of the topics on their sample list, as many of them did not apply to me. I don't remember puberty --- at least, I don't remember menarche, and the other changes were gradual (and slight!) enough to be non-issues.

Similarly, getting a bra was not a memorable occasion for me; I wore training bras, and only ever "graduated" to sports bras.

Mean girls? What mean girls? The bullies I worried about were all boys, and I wasn't worried about being ostracized or gossiped about so much as I was worried about physical violence. (That never actually happened, but it's always a possibility when you are one gawky social outcast and your harassers are many teenage boys. I feared it, at any rate).

I was also so socially obtuse at that point in my life that many characteristic "mean girl" tactics would probably have been wasted on me.

However. There is one thing that could have made a world of difference if I'd been explicitly told this sometime during middle school, or at the beginning of freshman year of high school: that it's okay to say no to any form of sexual contact just because you don't want to do it. In other words, I wish I'd been given a Talk about consent. I wish it very much, because my not-rape in high school happened because I didn't know I could say no, so I allowed all sorts of stuff I didn't enjoy to be done to me by a boy I didn't even like.

I might write something about that, if I can get it short enough, coherent enough, and I don't think I'd be being too much of a Debbie Downer sending it in.

Doubly Deviant: On Being Queer and Autistic

EXECUTIVE SUMMARY: This is a very long, rambly autobiographical post about being bisexual and being autistic: it compares my experiences coming to terms with both of these facts (always knowing about the autism, vs. having to figure out the sexual orientation; and also, doubting the possibility that I could *have* a sexual orientation because I thought autistic people didn't date or have sex, or even want to do either of those things) with those of Amanda Forest Vivian, who is a lesbian, and autistic, and has written about those things at some length at her own blog. I also discuss the ways being autistic has complicated being gay for me --- besides my initial difficulty realizing that what I felt about girls was, in fact, sexual desire, there was also a profound isolation from the larger Gay Community, which I never felt like I could (or would want to) join.
______________________________________________

Amanda Forest Vivian has a post from a while ago about this --- being gay (Amanda uses "same-sex attracted", to encompass lesbian, gay, bi-*, poly- and pansexual folk, and also people who don't really fit into any category but "queer"), but also being different in another way (like having a developmental disability) that might make it harder to navigate an LGBTQ** an LGB social scene.

Here's her description of coming out in high school ---

When I was in high school, someone who wasn't my friend said this to my (secret, closeted) friend, who then told me: "Everyone could see that something was different about Amanda, and then when they found out she was gay, they had an answer."

When I was in high school, the word dyke or lesbian was a way to easily quantify all the things about me that didn't seem right. When I was in high school I felt very alone.

When I was in ninth and tenth grade, I actually brought all this on myself by not denying that I was gay or bisexual, and presenting in a masculine way. I felt this was an important thing to do because other kids needed to see that queer people were just regular people. The problem with this idea is, in hindsight, obvious: I am not a regular person. Being openly queer in a heteronormative environment is a noble thing to do, but maybe not if you have anxiety about pretty much everything and have trouble talking to people.

A lot of my coming-out process happened when I was on a lot of medication and overwhelmed by the relationships I was in. By the time I was in eleventh grade, I was more able to clearly see what was going on, and I knew that I'd made a mistake by not being closeted. My school was very small, and some people were genuinely afraid to be friends with me in case someone said they were having sex with me, and I wasn't a person who could charm my way out of this stigma. But my school wasn't violently homophobic and I feel like a more normal person could have made a difference. It would have to be a person who fit in every way, except one.

--- which reminded me a lot of these much older posts by elmindreda and one of the other Amandas whose writing I love, Amanda Baggs, which postulate something called the "difference slot."

elmindreda:

[M]any of [the people I spend my time with nowadays], even though they seem superficially informed about basic disability issues, seem to believe in the difference slot.

The basic idea is that each and every person has their difference, and it should be respected. Note the singular form, however. When they learn of my autism, which is usually the first major difference to come up in conversation, they seem to think "oh, so that's her difference". They then proceed to fill in my difference slot in their mental table, and everything is as it should be.

Or so they think.

Then, a little while later, I happen to mention some other thing that makes me different from most other people, and their belief system collides head-on with reality. Usually, it's another one of my disabilities that triggers it. This is when they almost invariably go "..." for a while, only to finish with "you have that too?" In other words, "your difference slot is already filled, and you can't have another one."

Amanda (Baggs):

What I'm writing about is similar [to elmindreda's idea of the "difference slot"], but perhaps from a different angle. A phenomenon I've seen over and over again runs something more like, "Please violate only one stereotype at a time."

This can apply even if you have only one "difference" (be that autism, physical disability, whatever).

If you have several differences, of course, the problem becomes exponentially harder to deal with.

What Amanda Forest Vivian is describing --- being in a very normative environment (hetero- and otherwise) and trying to figure out, and come to terms with, how you deviate from those deeply-entrenched norms (which you do in multiple ways that you either cannot yet identify or are struggling to identify) --- sounds a lot like what elmindreda describes: the first difference you name to other people defines you, and explains Everything That's Weird About You, and people resist learning that there's more to the story than that One Thing That Explains Everything.

When you're very young, that first difference you name might not actually be the difference that's most relevant to your day-to-day life, either, but may simply be the first difference you know how to name. This is especially relevant to people whose differences are either a) internal or invisible, something you have to find out about yourself rather than something that's always been generally known about you or b) disabilities that affect your ability to put things into words, or even recognize all the ways in which you differ from most people. (Cultural differences might also factor into (b) --- if you come from a culture that does not discriminate between X sorts of people and Y sorts of people, and you immigrate into a culture that does, you may find that you don't even know whether you're X or Y, and that makes it difficult for you to navigate a social setting in which lots of important stuff hinges on whether you're X or Y.)

I had almost the opposite experience from Amanda's --- my first difference was my autism, which has been generally known about, and accommodated, and I've been able, to varying degrees, to talk about, for as far back as I can remember. As long as I remember being able to think in terms of "me" and "you" and "them" (which for me happened rather later than for most people, I suspect), I knew that I had a thing called autism which meant I was different from most people. As I grew older, I came to understand how I was different, and to be able to tell other people about it, but I always knew that I was different.

I had a very elastic understanding of this difference of mine, probably because I learned I was autistic before I could have any real idea what "autistic" meant, so I pretty much equated it with "whatever I am," adding on "whatever [other autistic person I meet] is, too".

(I had always had plenty of contact with other autistic children, both older and younger, and I also always had books written by autistic people about their lives on hand, so I never really fell into the "autism is *ONLY* what I experience" trap that some autistic people fall into --- it seems to be the flip side of the "impostor syndrome" that many later-diagnosed autistics have).

So, for me, being queer was the late-manifesting difference that made it harder to quickly and easily account for everything odd about me, and accordingly I had tons of self-doubt when I first started wondering if maybe I was gay.

My relative lack of interest in boys (had one crush in middle school, on a long-haired androgynous-looking boy) as I was going through puberty didn't tell me anything --- after all, I was autistic! By this time, I had come to understand a bit of what "autistic" meant, and one of those things --- communicated mostly by my mom's not thinking it a priority to educate me about sex and relationships --- was that I might never have sexual feelings, or act on them if I did. This was a boon in some ways: I was never assumed to be straight, exactly, and it was never taken for granted that I would marry by age twenty- or thirty-whatever and have x number of children. I was allowed to develop sexually at my own pace, and in my own direction, rather than feeling like I had to fit a mold. But, at the same time, since I wasn't assumed to be a sexual being, I felt like I couldn't really be sure that the things I was feeling were sexual feelings. So maybe I *did* expect to fit a mold, but that mold was asexuality rather than monogamous, married heterosexuality.

Accordingly, I waited to come out until I had clear, unmistakable evidence that I was gay: a really intense, serious crush on a female friend of mine who was bisexual and "out" about it.

Once I was absolutely certain I felt "that way," however, I thought nothing of telling people so if it came up in conversation. (I never lied, or tried to hide it from anybody, but then neither did I feel like I had to go around telling everyone I knew that I was now a lesbian. Either they'd find out sooner or later, or they didn't need to know).

It did surprise me, though, when in my last year of college I ran into a girl who'd been in my high-school graduating class --- whom I hadn't really known all that well; we went to a huge high school and knew each other by sight and by name, but never talked much and weren't friends --- and she told me that she, and a whole group of other people I didn't know or didn't know very well, apparently thought I was probably a lesbian. This surprised me because, as I mentioned, I was only really "out" to my friends --- the people I talked to enough that it eventually came up --- and I had figured I was more or less invisible to the rest of the school. So apparently I differed from whatever my high-school culture considered a "normal girl" enough, and in enough of the right ways, that people would think I must be a lesbian without ever having heard me say it. Either that, or they noticed me sticking around the girl I loved like I was actually glued to her side, and figured I must be on rather more than just "friendly" terms with her*** ...

I was also not the only lesbian, gay or bisexual person at my high school, either, so I had none of the anxiety that Amanda describes about being the Queer Model Citizen who shows everybody that queer people are people just like everybody else. If people needed that lesson, there were lots of people at my school who were better qualified (i.e., more charismatic, more involved, more flamboyantly out) than I was and more eager to do it besides.

Here, from later in the post, is the part of Amanda's story that most closely matched my own:

Even though my school is ssa-positive, most of the people at my school are straight just like most of the people in the world. I have enough friends that I never feel lonely, but I don't belong to a group of friends (partly because I don't like groups), and I know very few ssa people because I don't have stereotypical queer interests.

A few years ago I posted on a lesbian advice forum saying I was depressed and stressed because I wanted to believe I would someday get married and have kids, but that I had never been in a relationship and didn't think I ever would be. People responded telling me that if I was on a date with a girl, I shouldn't tell her I wanted to have kids, because she would think I was creepy. One person went to my livejournal, saw where I went to school, and told me that my school wasn't anyplace to complain about and that I should "stop whining." She provided a list of various social groups and activities that would help me to meet "dykes," including eating in a co-op (which would mean being organized enough to eat at the same time every day, taking up a lot of executive function cooking and cleaning, and constantly interacting with a large group of people I didn't know).

While there are a few differences --- I don't want kids, and I never got depressingly counterproductive advice because I never thought to ask for advice in the first place --- this sort of inability to find other queer women even on a campus with a burgeoning, vibrant queer culture (well, for Kansas anyway --- I went to KU, which, while it might look straitlaced and boring to someone from California, does have a fair amount of gay-themed student activities) is exactly what I experienced at college, too.

I wasn't closeted, and I wasn't isolated in general --- I just needed to socialize on my own terms, one on one with people I met in classes or in the dorms (or, sometimes, at the gym, which was my other main on-campus haunt), which might eventually lead to me joining a group of friends, rather than trying to meet people at huge gatherings of strangers (like a party or student club; I've never been much of a "joiner" because of my tendency to fade into the background and not enjoy myself at group events), so this ruled out my meeting other lesbian and bisexual women through formal channels, like the campus Queers & Allies club or gay-oriented parties and bars. Unfortunately, the informal, one-on-one processes I used to make friends --- and which worked really well in that regard --- never linked me up with any queer women. So I went through college knowing that lesbian and bisexual women were around, but I just wasn't meeting them.

Rather than belong to a lesbian or queer community, I just existed as a lesbian. (I didn't know I was bisexual until later in college). What I had growing up as an autistic person --- personal acquaintance with a number of other autistic children, access to autistic adults' life stories --- I did not have when I was coming out as a lesbian. I knew I liked women, but never met anyone who might reciprocate those feelings.

What compounded my isolation was my total lack of anything resembling gaydar. I really do have the inability to "read" faces, body language, tones of voice etc. that has become a stereotypical characteristic of autism, so I need to be literally told 1) that a given person is gay or bisexual or 2) that a person is attracted to me. I neither flirt nor perceive flirting in another person, which might well have told an unknown number of interested lesbians that I wouldn't welcome their attentions.

So when Amanda says this ---

I used to have a political problem with the way other ssa people behaved. Whenever I thought about it I got so upset I didn't know what to do. The way I saw it, there were two kinds of ssa people:

1. "gay" people (such as people involved in the HRC) who were very normal and wanted to have normal jobs and normal families. They didn't think much about trans people, non-homosexual sexual minorities, or anyone who wasn't normal.

2. "queer" people (such as a lot of people at my school) who were very into not being normal, playing rugby, performance art, co-ops, and so on. Many of them identified as trans but didn't seem to realize that some trans people actually take hormones and get surgery and are poor, and are not students at a liberal arts college who change their pronouns every week.
...
I felt weird because I wanted to get married but I wasn't normal and I felt like "gay" people wanted to help normal people get married and "queer" people were anti-marriage so neither one included me.

--- I nod because the feeling of not belonging, of not finding what one is looking for in a group, is familiar to me, even if the actual dynamics of gay-identified versus queer-identified groups fall far outside my own experience, which is of near-total**** isolation from other women attracted to women, whatever their chosen label or subculture*****.

*According to Genderbitch, it's actually possible to be bisexual (attracted to people belonging to either of two sexes) without one of the categories you're attracted to being the same as your own. When you consider a broader spectrum than just cis men and cis women --- one that includes trans men, trans women, non-binary trans people, intersex people and people in whatever other sex-and-gender categories there might be --- a bisexual person might be attracted to people in any two of these categories. So not every bisexual person necessarily fits under Amanda's "same-sex-attracted" umbrella, but I do (having so far only been attracted to cis women and cis men) and this post is about Amanda's (who is a cis lesbian) experience and mine.

**Edited to reflect a lesbian trans woman and an aspie's criticism in comments that, since I am talking about cis lesbian/bisexual stuff, I shouldn't use "LGBTQ" because it implies an inclusion of trans people that isn't in the post.

***I wasn't, as a matter of fact. I was in love with her, and told her so repeatedly, but she didn't love me. At least, not in a romantic way. We did come to be pretty good friends, though, even after high school!

****I did meet one other lesbian at college, whom I found nice, and attractive, and would certainly have befriended and quite likely have dated if we had ever met again. We just ran into each other one day, outside the dining hall, started talking, and kept talking for a long time eating lunch together. Then we went our separate ways and never bumped into each other again. She played rugby, and tried to interest me in joining, but I was unsure about how much extra time I could spare for practices --- I always took really heavy courseloads, tried to keep my GPA pretty high, and spent one to two hours in the gym every day. I figured if I did much more, I'd feel like I was stretched too thin. So, while I had good reasons for not wanting to add another commitment, I still feel sad about missing that particular opportunity. :(

*****Had I managed to fall in with the Queer Culture Amanda describes, I would probably have found it a more comfortable fit than she did, since the kind of alternative family structures she says they liked to try to create are just the sort of thing I'm looking for: I need kind of a lot of support, day to day, and don't think any one person could be everything I need and also have a life of hir own. So a poly family actually looks really good to me, and indeed my last relationship did somewhat resemble this.

Link Roundup: Fat Is a Feminist Issue Edition

Within the last week or so, there's been a spate of really good feminist blogging about intersections between feminism and fat acceptance.

From Feministe, three guest posts: one by Atheling, who blogs at This Wicked Day, about similarities between slut-shaming and fat-shaming; one by zuzu, who used to be a Feministe contributor and now writes mostly at her own blog, Kindly Póg Mo Thóin, that deals with how fat-shaming health alarmism actually harms fat people's health, both by keeping them out of doctors' offices and by leading doctors to look no further than their patients' BMIs to explain their various health problems; and one by Spilt Milk (who writes an eponymous blog) about how body-shaming permeates mother-daughter relationships and how fat acceptance is radical because it's based on kindness and, well, acceptance, first of yourself and then of others.

There's also this terrific post by Meowser at Fat Fu, which contrasts the reasonable things fat-acceptance advocates are actually saying with the raving denialism everyone else seems to hear:

We say, "Weight is, for the most part, not a very good proxy for health, and there are much better ones, like socioeconomic status." They hear, "Being dozens of pounds over (or under) your baseline weight is just ginchy for you, and your doctor should never bring it up ever." ...

We say, "What causes people to weigh what they do is complex and multifactorial, and varies a lot from one person to another - and you can't tell what people's habits are from their pants size." They hear, "Weight is purely inherited and has nothing whatsoever to do with behavior." ...
...
We say, "Hounding kids about their weight is not likely to result in happier or healthier kids OR adults, for the most part." They hear, "We don't care if all the children lose their toes to dry gangrene by the time they're 12, as long as we can eat all the baby-flavored donuts we want."

Finally, there's this post by Aunt B at Tiny Cat Pants. She talks about two important things that often go unacknowledged in discussions about fat, public health and how U.S. society has changed: first, the class aspects of sitting around waxing oracular about why Those People are so fat and what they must be doing wrong ...

... [W]e talk about obese people having no self-control or being too stupid to know what to put in their bodies or lacking access to experts who could tell them what to do with themselves; the narrative is all about how obese people put all kinds of things in their bodies because they're too stupid (or uneducated to know better) and they thus have really negative life outcomes. Now, read that same sentence and swap out "obese" for "poor."

It works just the same.

I find that interesting. In both cases, it's about a group that has too many people in it, who need education and expertise and guidance, and who are deemed failures or troublemakers if they resist efforts from the outside to improve them.

The word "class" doesn't quite fit, but I think it has to do with demanding people want to strive to remove evidence of what has been deemed their shitty circumstances. Yes, of course, you will be punished for striving. But you will be punished worse for not striving.

It's almost as if the obese/the poor, by their very existence, insult their "betters" by not recognizing and properly responding to their "betters'" expertise on how best to live life.

... and, later, about implicit sexism in how most people --- even most feminists --- talk about fat:

Is it really not clear to feminists how the "obesity epidemic" is about reasserting the right to police women's bodies? Except now, we're doing it for your health!When people talk wistfully about how "nobody cooks at home anymore" who do you think that "nobody" used to be? When people talk about how kids don't get the same free rein of the neighborhoods they used to have, who is the unspoken monitor of all that free time?

Who has, supposedly, fallen down on the job causing us all to be fat?

Spilt Milk also addresses the mother-blaming aspect of obesity panic in her post --- she describes the double bind mothers find themselves in where, if a daughter develops an eating disorder, it's the mother's fault for being too uptight about food and teaching the daughter to hate her body, while, at the same time, if the children are fat, the mother is blamed for being too lazy to cook healthy food and make sure her children get enough exercise!

EDIT: Radical feminist blogger The Bearded Lady has also written two recent posts on fat acceptance: one --- like zuzu's that I linked earlier --- about fat women and doctors, and how doctors both miss underlying conditions that need treatment because they think fat people just need to lose weight, and also how doctors will see a fat woman's fatness as so dangerous, so unhealthy, that they will prescribe extremely aggressive measures to get them to lose weight. Her other entry is about her personal journey toward fat acceptance, and how for her, accepting her body came as part of her radical feminism, and her rejection of heterosexuality:

[A]lthough I had previously strenuously denied any connection between hating my body and wanting men to like me, when I stopped wanting men to like me, I stopped hating my body. Not immediately, in a flash of insight, but gradually, over time, I realised that I was looking at myself in the mirror and not thinking 'ugly' -- not thinking anything at all, really, just looking for toothpaste on my chin or whatever.

Hating my body/self was, for me, expressed not only in extreme dieting and thinking myself deeply ugly, inside and out. I also hated my body by allowing men to use it, by letting men fuck me, when I (the tiny little voice inside me that was barely allowed to speak) knew that I was being violated and used. It was a joyful moment when I realised I could just stop.

I especially liked that entry of hers, because it's probably the closest any other woman has come to describing a relationship to her body, and to the concept of "attractiveness" and whether one possesses it or not, that resembles mine. It's not a total match, and some things are actually very different between the two of us --- I never went through a period of intense dieting and *wanting* to be thin and conventionally attractive like she did, for instance --- the end state she describes is very close to what I have, and it entails a rejection of beauty and attractiveness rather than the reclamation of those things that seems to be a lot more common for large women who learn to love their bodies. I might write more about how that came about for me later, but for now I was just really happy to see someone else articulate these feelings that I also have, and have struggled to characterize accurately.

On Neurotypical Privilege

Bev at Asperger Square 8* is drafting, with the help of her commenters, a list of privileges that come with being NT, along the lines of Peggy McIntosh's "White Privilege: Unpacking the Invisible Knapsack" and various online checklists dealing with male privilege, straight privilege, (temporarily) able-bodied privilege, cisgender privilege, thin privilege, Christian privilege, class privilege, etc.

Here are a few that I really like:

I can assume that police officers will not become alarmed at my natural body language, and find it necessary to subdue me in advance of any wrongdoing. (Bev)

I can reveal to my boss and coworkers that I am NT, without fear of losing my job. (Bev)

I can assume that most restaurants, theaters, stores and other places I would like to go will not be so loud or brightly lit or crowded that I will become unable to function at a basic level. (Bev)

I am never told that the fact I have a certain cognitive skill means that I am lying when I say I lack another cognitive skill. Nor am I dismissed as incapable of things I truly can do, because I lack certain cognitive skills. (Sanabituranima)

If my parents or spouse abuse me, I will not be told that my neurology drove them to do it. (Sanabituranima)

If I am murdered, my murderer will not be let off because killing someone of my neurology is an act of mercy. (Sanabituranima)

The services that I need to survive not only already exist, but even if I use those services on a 24-hour basis, I will always be considered independent. (Amanda)

If I am having a bad day or even a bad and stressful period where I am under a lot of strain, people will not say I am 'regressing' and panic, fret or automatically tell me I need medication or intensive treatment. (Norah)

My deficits are not considered deficits at all. Instead, they are considered universal faults in human cognition (even if they are not universal). And a good deal of effort is undertaken by my entire society to compensate for those deficits. (Amanda)

If it happens that I am better at something, more empathic, more sensitive, more honest or authentic, it is not considered a defect. (Anemone)

I will never have people tell me that I am a mindless waste of space and then deliberately fail to make any attempt to save my life in an emergency. (Amanda)

I have never had to use physical violence as my only means possible to communicate basic information. (Amanda)

My behaviors, abilities, and skill levels at age 2 or 3 are considered indicative of an immature phase of life that will pass naturally, not as representative of my prognosis for the rest of life. (Combative Autistic Wench)

The skills and talents at which people of my neurology tend to have an advantage, around which the system of the society in which I live is founded, are presumed to be objectively more important than those more commonly found in people of other neurological types. (Combative Autistic Wench)

If I fail, most will encourage me by telling me that I will ultimately succeed. (Wandering Jennie)

I can pursue a particular interest or hobby to my heart's content without being told that I am engaging in an unhealthy "fixation." (Sarah)

If I fail to understand autistic people, this is attributed to a deficit inherent in autistic people, rather than in me. (Amanda)

My neurology is not classified as a mental disorder. (Combative Autistic Wench)

No one sees my neurology as being in need of prevention, treatment, or cure. (Combative Autistic Wench)

If my sexual orientation, gender identity, lifestyle preferences or beliefs are deemed nonstandard, others will not suggest that I am pretending, incorrect, jumping the gun or unable to really know such things about myself because I am neurotypical. They will not use my neurotypical status as a basis for defending intolerant remarks or beliefs about any of these identities. (Pazi)

I've not had to deal with a lot of these things, fortunately; though I don't think I quite pass for "normal," I also don't read as "severely disabled," either. When I am overloaded, I don't explode in an emotional outburst; instead, I freeze and stay in one spot, silent and unmoving. I may not be capable of doing anything to get myself out of the situation, but I also do not attract any attention to myself that might get me carted off to someplace even more unpleasant. I also have the power of speech most of the time, and have been getting good at recognizing the signs of overload and asking for help, even from strangers. (I have done this in an airport, even!) Finally, I've been hugely lucky in the people I have as relatives, friends and associates. People in my life tend to listen to me, to treat my problems as real problems and offer whatever help they can, to respect my right to decide things for myself and to take my perspective into account when making group decisions.

Even with that, though, I've still experienced some of the silencing tactics listed above. I've been assumed to be incapable of knowing my own mind, my own needs, or my own feelings. I've also internalized some of this stuff: I hold myself to a fairly high evidentiary standard before self-disclosing anything "nonstandard," like bisexuality**, polyamory or (suspected) transgenderism. I do this because I suspect I will be met with an unusual amount of doubt when I try to "come out" as whatever.

I also noticed (along with Norah and Anemone) that some of these barriers and prejudices overlap with those facing people belonging to other marginalized groups.

First, the various items about needing to suppress one's natural way of moving, speaking or expressing emotion reminded me of the double standard governing women's, and people of color's, public expression of anger. If a man is assertive, a woman doing the same thing will be considered bitchy, shrill or hysterical. Similarly, a person of color speaking up, voicing disagreement, or complaining about being wronged, will be seen as much more aggressive and out of control than a white person doing the same thing would be. Black men, in particular, are always assumed to be violent thugs, even when they're just minding their own business.

Lots of the items about being pathologized also echo much of what women experience from doctors and from popular notions of female biology: if a woman is angry, or frazzled, or upset, or in any way "off," she'll probably be asked if she's menstruating. She's also held to a much higher standard in general for staying calm, civil and reasonable --- even in very heated discussions --- lest everything she says be chalked up to "hormones" and ignored.

With the specific matter of one's love life being seen as inherently pathological, there's overlap with the double standards gay and lesbian couples face. No matter how stable and healthy a gay relationship might be, it's usually judged less legitimate than even the wobbliest straight union, which feeds into double standards around marriage and adoption.

With the items relating to medical care, and having one's complaints ignored as being just part of autism, there are obvious intersections with other invisible disabilities, especially those involving chronic pain. People with chronic pain are commonly told they're imagining their pain, or that they need to suck it up and stop dwelling on it. There are also intersections with fat --- see this blog for examples of just about every serious health problem imaginable being attributed to the patient's size, and being dismissed with "Just lose some weight" --- and with femaleness and blackness.

Items about employment discrimination overlap with every other marginalized group: people of color, poor and lower-class people, fat people, ugly people, visibly disabled people, invisibly disabled people, women (in all but a few female-dominated spheres, which are usually lower-paid, or become lower-paid as they come to be feminized), trans people, gay people, and sex workers. Items dealing with anxiety over whether to disclose one's membership in these groups applies to all identities it's possible to hide --- like, say, atheism(or membership in any minority faith), being gay, being trans, or having an invisible disability.
The other items that strike me as being almost universal among marginalized groups (at least, those that currently have an active civil-rights movement) are these, which deal with speaking publicly about autism-related issues:

I am never or rarely asked to explain what it means or what it's like to be neurotypical.

I am allowed to use the word "we" without being accused of trying to speak for all neurotypical people.

People are not pre-inclined to view anything I say in certain ways because I am neurotypical.

My neurotypicality is never used as a joke.

If I achieve some sort of success (academically, professionally, socially or otherwise), I will not be patronizingly turned into an "inspiration" for other people.

If I write an autobiography, it will be labeled a book about me as an individual and/or a book about specific things I have done (acting, mountain-climbing, sport, science, music, whatever) rather than a book about neurotypicality.

...and these, about engaging with potential allies:

If I make even a half-assed attempt to look like I advocate for autistic people, I will be considered a hero, and I will not be considered to be acting out of self-interest. Autistic people will be afraid to call me out on my obvious abuses of nonautistic privilege because "beggars can't be choosers" when it comes to allies.

No one expects me to gratefully embrace them as an ally when they tell me that they support an organization that's dedicated to preventing more people like me from being born.

...and then these, about one prominent (or notorious) autistic standing in for all autistics:

People do not assume that NTs all have the same taste in food, books, music, film, television shows and similar.

People do not assume that all NTs have the same views on politics, religion or philosophy.

If a non-NT *does* say that non-NTs (or certain types of non-NTs) are better than NTs, I do not have to explain millions of times that I do not agree with this person. Nor do I have to repeatedly tell everyone that accepting my life as valuable does NOT mean assuming others are inferior.

If I tell someone my neurotype, they will not automatically assume that I must be just like another person of my neurotype that they know.

All of these things --- the need to be extra careful when speaking publicly, both to avoid seeming angry, whiny or irrational and to try to fit as many different issues and perspectives into what you say as you can, because you know you might be the only member of your group many members of the dominant group have ever encountered --- I've seen in just about every other civil-rights movement I know anything about. Some might have more of one tendency than the others --- I don't think women typically get lumped in together as some sort of hivemind --- although you could make a case that feminists do --- but one thing I do see a lot of in mainstream feminism (not so much in radical feminism, which tends to distrust men) is the extra-low standards for male allies. Mainstream feminists are often so overjoyed that a man might be interested in feminism that they're willing to praise him much more for writing, saying or doing something that would be totally unremarkable coming from a woman. The black civil-rights movement seems to have the opposite pattern: white allies do not occupy a privileged spot within their movement, as male allies seem to do in feminism, but society at large does a terrible job of seeing black people as individuals. This, despite the fact that the black civil-rights movement is one of the oldest movements in the U.S., and its leaders have been speaking --- and disagreeing --- publicly for close to a century now!

The last universal I can think of is the invisibility of people belonging to more than one category. Feminism and GLBT activism often act as though only white, able-bodied, neurotypical middle-class women's/queers'/trans people's issues are feminist/queer/trans issues, and, just as often, female, gay, trans or disabled people of color are marginalized (or oppressed --- certainly women within more conservative communities, like immigrant enclaves from patriarchal Muslim countries, are oppressed as immigrants and people of color from without and oppressed as women from within) within their communities, and, though I don't see much of this within the disability-rights movement itself, disabled people are often assumed by society at large (and doctors and caregivers in particular) never to be gay, or trans, or have an otherwise complicated identity. A lot of this is specific to sex- and gender-related stuff, as most non-disabled people think of disabled people as large children, and thus asexual and not concerned with gender identity.

*Another recent post of hers that I liked is this one, of which I was quite forcibly reminded in the comment thread on this post at Sarah's blog. When did feces-smearing become one of the Hallmarks of Actual, Real Autism, anyway?

**I didn't know I was bisexual at first; because my first serious love was a woman, and because I was generally indifferent to men at an age when most people were dating and having sex, I assumed I had to be a lesbian. Of course, later on, after I had been calling myself "lesbian" for some years, and had IDed myself as such to all of my friends, I fell in love with one man, and then another. I'm sure the ol' credibility hasn't been quite the same since then.

Oh No, An Analogy!!

While drafting my epic-length response to Jonathan Mitchell's comment on this post, an analogy occurred to me.

First, some context.

Jonathan wrote:

Autism is still a disability that prevents people from being able to talk, causes them to smear feces on walls and be totally dysfunctional in its most severe cases. Trying to make the glass half full by describing it as a different form of brain wiring rather than a disease indeed does not change the contents of the glass. It is still a bad thing that needs to be cured no matter how much phoney baloney spin you and the rest of the ND put upon it and try to make a glass half full.

I responded (in part):

...I do not think the idea of a cure for autism is anything more than a colossal blind alley. I strongly doubt its possibility, for one thing, given how many different genes have been shown to play a role in its heredity, and the tiny share of all cases of autism each gene is found to explain; and for another, I think it's ridiculous to try to engineer away an entire category of people on the grounds that *SOME* of those people lead miserable lives for reasons that might be partially attributable to their genetic makeup.

As I was writing that, it occurred to me that there does exist a category of human being that, however internally heterogeneous it may be, differs from what is often held up as the default, "typical" human being in a lot of ways, and whose overall failure to thrive in comparison with the default group is often blamed on this other group's tricky psychological and physiological differences. Yet, despite this group's disability, no serious person would ever suggest curing them of their chromosomal condition*.

Who are these people? Why, they're women!

Compared to men, women are much more likely to have certain psychiatric disorders (e.g., anxiety and depression), less likely to be working, more likely to be working an unrewarding, low-paying menial service job, and much, much more likely to be poor. They are also more likely than men to engage in self-injurious behavior or attempt suicide, although men succeed in killing themselves much more often than women do.

Most people's** first impulse is not to blame all of these things on any inherent physical or psychological feature of womanhood, however.

Even when there might be innate physiological factors that work to women's disadvantage, though --- our seriously inconvenient reproductive biology springs to mind, as does the possibility of sex differences in brain chemistry contributing to women's greater share of mood disorders --- nobody uses that to argue that femaleness itself is a pathological condition that should be cured!

That's as it should be, and also as it should be for autism.

EDIT: It turns out this analogy has been made before --- by Joseph, back in 2006! His post is a lot funnier than mine, too.

*Yes, this statement is a bit problematic, in that it glosses over the extent to which womanhood has been, and still is, pathologized. There is a significant difference, however, between the way women are pathologized and the way autistics are pathologized: certain aspects of women's lives --- menstruation, pregnancy, menopause --- might be medicalized, but every aspect of autistic people's lives, up to and including the mere fact that we exist, is seen as a major medical crisis to be stopped. I feel reasonably certain that, if someone were to call all women diseased, and call for a cure that would turn them into men, almost everybody would consider that person crazy. And that's the important thing for this analogy.

**I am optimistically excluding antifeminists from "most people" here. I do think that, while most people might indeed be mistaken about the extent to which sexism exists in the industrialized West, they are usually willing to grant that women in other parts of the world have it pretty bad, above and beyond what men in poorer countries experience.

Intelligence Is Racialized

In my last post, I started talking about Anna Stubblefield's talk at last September's Cognitive Disability: A Challenge to Moral Philosophy conference about the entanglement of race and intellect. Today, I'd like to post a few more excepts from that talk, which I thought were hugely eye-opening about the "double dose of oppression" disabled Americans of color receive.

[B]lack students are both more likely than white students to be labeled as special-needs students and more likely, once labeled, to be relegated to special-education ghettos rather than receiving the least restrictive, inclusive education mandated by federal law. Black adults with Down syndrome and with severe mental retardation are less likely to get the healthcare and support they need to live the longest and most independent lives possible. This is the unsurprising outcome of a social system that embraces a concept of measurable intellect that was originally designed specifically to justify the segregation and exclusion of nonwhite people, along with white people who, through poverty, ethnicity or perceived defect, were deemed undesirable.

Stubblefield argues that this kind of stratification follows perfectly from the Western way of thinking about cognitive disability:

The attribution of cognitive disability through intelligence testing is not, and has never been, a means of providing people who struggle to learn and to engage in life activities with the assistance they require. ... We can assess what people need by observing what they learn easily, and in which areas they struggle, without slapping a label on them. We can provide people with the help they need without marginalizing them in our society, whether in school or in adult life. As long as we persist with the us-them move of intellect assessment, entangled as it is with the history of oppression against nonwhite people, and as long as services exist in a social context where race and social class are salient, then nonwhite people with developmental challenges are going to receive poorer-quality services than white people with developmental challenges.

Indeed, I have read elsewhere that the original intended use of the IQ test --- as developed by Alfred Binet --- was not to rank individuals or groups, but to alert teachers to particular students who might need help in particular areas. The website I just linked to has this to say about Binet's idea of intelligence, and his intentions relating to intelligence testing:

Binet was upfront about the limitations of his scale [i.e., the concept of "mental age" on which IQ is based]. He stressed the remarkable diversity of intelligence and the subsequent need to study it using qualitative as opposed to quantitative measures. Binet also stressed that intellectual development progressed at variable rates, could be impacted by the environment and was therefore not based solely on genetics, was malleable rather than fixed, and could only be used on children with comparable backgrounds (Siegler, 1992). Given Binet's stance that intelligence testing was subject to variability and was not generalizable, it is important to look at the metamorphosis that mental testing took on as it made its way to the U.S. (emphases mine)

Imagine that, a developmental psychologist acknowledging that people don't all develop at the same rate or in the same way!

Anyway, back to Stubblefield. As she says above, we don't need to categorize people or make sweeping judgments about their overall intelligence, sentience or worth as persons to identify areas in which they may need special help. One function that intelligence testing, and the creation of a seemingly neutral arbiter of value (for, in a highly technological, industrialized culture like ours, literacy, reasoning and mathematical skill are highly valued) that often serves, in many people's minds, to validate certain other hierarchies, like those of race, class or sex.

We are still using intellect assessment as a way to categorize people on the basis of race, class and gender. It seems that we believe that doing so on the basis of a supposedly neutral notion of intelligence is more politically correct than being up-front about how categorizing people along these lines advantages those who already have social power. But even if we were to, or could, separate out this web of constructions so that we were no longer in any way drawing race, class or gender distinctions, the question would remain: “Why is it important to us to classify people on the basis of intellect?” And the answer is that doing so has no justification other than the us-them move.

(The meaning of her phrase "the us-them move" is somewhat obscure to me, though I suspect it means designating a privileged group --- an in-group --- and an out-group. As the groupings get called into question, as by various social-justice movements, the in-group needs to concoct other, fallback rationales for their privileged position. Intelligence serves as a good fallback rationale because it does tend to be found more in the already-privileged classes, so it reinforces existing hierarchies*, and it seems like an unassailable criterion of worth. Philosophers since Plato have been extolling the virtues of rule by the smartest).

Here in the US, the "existing hierarchy" that intelligence testing is supposed to uphold has a lot to do with race. Stubblefield traces the history of intelligence research in the 18th, 19th and early 20th centuries in Europe and America, and finds it can be divided into two stages:

1. Use whatever means (typically skull volume or morphology) to show that the white race is intellectually superior.
2. Find the "best" method of testing intelligence, taking it as given that a good measure of intelligence will give you a certain set of results --- i.e., consistently reproducing the already-decided-upon racial hierarchy.

Since, from the beginning, "intelligence" was equated with whiteness, nonwhiteness and intellectual disability were similarly conflated.

Throughout this period of research, white intellectual superiority was taken for granted, while intellectual deficiency was equated with nonwhiteness. In 1844, for example, Robert Chambers proposed a recapitulation theory of human development, arguing, “Our brain goes through the various stages of a fish’s, a reptile’s, and a mammifer’s brain, and finally becomes human. There is more than this, for after completing the animal transformation, it passes through the characters in which it appears in the Negro, Malay, American and Mongolian nations, and finally is Caucasian.” J. Langdon Down, whose name is still invoked in the classification of Down syndrome, based his understanding of intellectual deficiency on theories like Chambers’s. Expounding upon his original 1866 publication, “Ethnic Classification of Idiots,” Down wrote, “I was struck by the remarkable resemblance of feeble-minded children to the various ethnic types of the human family.” He proceeded to discuss white feeble-minded children who, in his words, “from some deteriorating influence” had been, again in his words, “removed into another ethnic type, and therefore resembled so-called Negro, Malay, North American Indian, or Mongolian people”. What is striking here is that the initial identification of white children with Down syndrome, a cause of so-called “real cognitive impairment,” was understood in terms of racial deteriorization. It is worth keeping in mind, when I discuss ways in which black Americans with developmental challenges experience discrimination in provision of support services, that Down syndrome in black children was not of interest to J. Langdon Down. His concern was with white children who had experienced racial deteriorization. Given his definition, it was not possible for a black child to have Down syndrome, since it was not possible for a black child to racially deteriorate; there was no lower rung on the racial ladder.

Robert Chambers's original paper can be read here**.

That historical context goes a long way toward explaining the findings quoted above, of poorer outcomes for black adults with Down syndrome, mostly because they do not have access to the kind of healthcare and supports that white adults with Down syndrome have.

While Down syndrome is now diagnosed via karyotyping, rather than some white doctor's subjective evaluation of how much you resemble other members of your race, even that objective, not inherently racialized diagnostic procedure is probably a lot more routine for white mothers than for black ones. Black women fare much worse than their white counterparts in terms of access to prenatal care in this country. So, even though it is no longer definitionally impossible for a black person to have Down syndrome, there is still a fair amount of diagnostic invisibility going on. And, even when there is parity in diagnosis (as in the people with Down syndrome recruited for the study described above), disparity persists in insurance coverage, ability to pay for medical tests, treatments and nonmedical support services, access to specialty clinics, housing options, and just about every other quality-of-life indicator you care to name.

You can find video of her talk here; it's very interesting, for those whose computers can handle such a big download.

*Not only because it really does occur more in those classes, because, as Binet noted, having a nurturing, stimulating environment in which to grow up improves one's chances to reach one's full intellectual potential, but also because the tests tend to assay skills that children of the privileged classes are more likely to have practiced.
**Funny-sad tidbit, courtesy of Wikipedia: Chambers's theories about human evolution and development, which were published anonymously, were considered so scientifically sloppy that many critics were convinced their author must be a woman!

Disability Rights and Bodily Autonomy

Shiva has an intriguing post up about assisted suicide and "mercy" killing --- as a libertarian, he is obviously in favor of the former and opposed to the latter. While most of his post is about recent assisted-suicide cases in the UK, and specific details thereof, it's the general principles I want to respond to:

The thing I really want to get to here, though, is the concept of "mercy killing". I want to say, as emphatically as possible, that there is no such thing. If Lynn Gilderdale's mother was actively involved in her death [link], then it was either murder or assisted suicide - if Lynn did not ask her mother to help her take the overdose, then it was the former, and if she did it was the latter. As, according to the Mail report [link], she had twice attempted suicide already by the same method (although it does not say why she was not successful), in this particular case assisted suicide looks more likely - but that doesn't equate to "mercy killing", which term suggests a person being killed, not at their own request, but based on the decision of the killer, not the killed, that killing them would be more "merciful" than letting them live.

That is killing someone against their will, and that, emphatically and undeniably, is murder. In fact, as far as I'm concerned, it's a worse kind of murder than one motivated by hate, anger or jealousy. Murder with those motives I can understand, but the monstrous twistedness of the mentality of someone who claims to murder someone else out of love utterly terrifies me, so much that I can hardly write coherently about it. A society in which familial love can be twisted into wishing those you love dead, apparently doing so because you love them, is a society there is something deeply, horrifically wrong with.
...
It would logically not need to be said, but probably still bears repeating, that in a libertarian worldview this is totally different from assisting with a person's own decision to end their life, even though (as I said in my previous post on the subject) the mainstream media (and seemingly some parts of the disability rights movement) insist on conflating them.

I said in a comment on his post that I could see being against even assisted suicide from a disability-rights perspective: in the ableist, profoundly stratified society we live in, where access to needed supports is often confined to those who can pay for them, more people may choose to end their lives than would in a more accessible, egalitarian society, and many of those people could not be said to have "chosen" their fate so much as to have been pushed into it by myriad external forces. It is not hyperbole to say that this, if it became widely practiced, would constitute genocide.

This conflict between the individual's right to hir own body and the existence of social conditions that make some choices problematic comes up in a few other issues at the intersection of feminism and disability rights: sterilization, genetic testing and selective abortion.

Most feminists believe that women have the right to absolute reproductive freedom --- that they ought to be free to make whatever choice, for whatever reason, irrespective of whether it's a good reason. That includes the freedom to abort a perfectly viable, uncomplicated pregnancy if she discovers the fetus will be born with a disability. Disability-rights activists, even feminist ones, do not much like that possibility. They condemn prenatal testing for such conditions as Down syndrome, autism and whatever else as eugenic, and abortions sought on the basis of positive results to such tests as genocidal.

In the objections to both assisted suicide and selective abortion, in addition to the immediate concern that any individual's rights are being violated, there's an overarching concern about the direction society will take (with respect to disability rights). Since individual solutions to these problems (of severe disability, prolonged illness, or pregnancy with a disabled fetus) cost society nothing, while systemic solutions (greatly improving the quality and availability of healthcare, reworking infrastructures to make them more accessible, changing cultural attitudes toward disability, etc.), though they are often the best solution, and though they solve the problem once and for all rather than one instance at a time, cost a lot in money, time and effort. Especially with selective abortion, there is a fear that people with whatever disability is being talked about (usually Down syndrome) might become such a tiny numerical minority due to selective abortion that social supports for them will atrophy, having become no longer cost-effective. No choice is made in a vacuum, these critics say, and even when they do not wish to bar women from getting selective abortions, they call on women to realize that their choices, in aggregate, will have effects far beyond their own lives, and to factor the likely impact of different courses of action into their choices.

This same question lies at the heart of the endless quarreling within feminism over pornography and prostitution. How can the right of those women who choose to be sex workers to do whatever they want with their own bodies be squared with the rights of other women who were forced into sex work? Furthermore, how can the right to do sex work be reconciled with the endemic cultural stew of woman-hating imagery of which sex work is part and parcel?

In all of these quandaries, I think the right choice lies in preserving the greatest possible level of individual freedom (in other words, yes, you should be free to decide to die, even if you need help performing the life-ending act; yes, you should be free to get an abortion for whatever reason; and yes, you should be free to use your body however you like, and to choose whatever line of work you want, even if most people wouldn't approve of your choices) while simultaneously pursuing a more equal society with the vigor that comes from knowing that, even with the whole panoply of individual solutions open (theoretically) to all, most people will be restricted by economic, personal and social circumstances to a few bad choices.

Systemic solutions don't destroy people's freedom to pursue individual solutions; they just make it less likely that very many, outside the elite, will do so.