So a few days ago, my friend Julia sent me a link to an article on Disability Scoop titled “Miniature Brains Reveal An Outsized Secret About Autism.” Because Julia knows my tastes in science. Always a quality trait in a friend. The only other thing in her message, besides the link, was: “Enjoy.”
In that spirit, I decided to fucking enjoy myself. Please read the article itself (it’s relatively brief) before reading my comments, as they won’t make much sense without context. That said, once you’ve read the article, my comments were written in response to things in the order that they appear in said article. And I have done my best to indicate sarcasm where it occurs, especially since oftentimes I’m being sarcastic about science that I don’t expect every reader to already know. That said, please enjoy your lovely selves.
MY COMMENTS. AHEM.
- When you’re looking for the origins of autism, it’s only natural to assume that you might be able to find said origins by growing miniature neuronal Chia Pets in your lab. Like, duh! Brains are just like any other organ; they don’t need to be part of an organism, inside some weird “body” thing, in order to perform their basic functional and developmental roles! That would be silly, and super inconvenient for scientists who like petri dishes full of cell growth media more than they like the actual people they’re supposedly researching. [this whole bullet point is sarcasm!]
- “…[T]o rewind the clock to the brain’s earliest days of development.” I’m so glad someone’s finally focusing on those who are most impacted by teh autismz: autistic embryos. [also sarcasm]
- Oh, wait. Sorry. I keep forgetting these “brains” were never attached to actual bodies, embryonic or otherwise…
- Which means they like, never received, processed, or stored any sensory input ever?
- Sorry, but I don’t think you get to pat yourself on the back for peering into the depths of early human embryonic development when your research included a total of zero embryos developing within zero uterus-type gestational environments.
- A. There is no such thing as an autistic embryo/fetus, in case that wasn’t clear before, and
- B. I’m gonna keep calling those model brain things “miniature neuronal Chia Pets” until someone manages to come up with a more accurate description of them.
- ~~“DIABOLICALLY COMPLEX”~~
- fucking demons sneakily replacing all ur normate babies with horned autisms! [sarasm]
- (HIIIIII DANI)
- *Emma stares into the camera like she’s on The Office*
- Clusters. Of. Embryonic. Brain. Cells. Smaller. Than. One-Tenth. Of. An. Inch. Across.
- “[T]he autistic brain” ranks pretty high on my list of phrases that drive me utterly bananas.
- We are not a Borg collective, nor are we some kind of super ineffectual clone army.
- And the pedant in me can’t help but also point out that, actually, even drones in a/the Borg collective and “identical” clone soldiers wouldn’t all exhibit the exact same brain structures! They all would have had different experiences and/or been exposed to different environmental variables!
- Were literally any of these freaking neuroscientists actually listening during the lecture(s) explaining the “Fire together, wire together!” principle?! (Jesus Christ Superstar, I swear. Neuroscientists these days, you know?)
- They believe their results indicate that The Autistic Brain “overproduces the brain cells that act to quiet the cacophony of neural activity in the brain.” Science fail. Science fail. Alert, alert, science fail.
- Please stop reducing the role of GABAergic and/or inhibitory neurons to just “the things that make ur brain quiet! :D” Please. Stop. That is not how. Fucking brains work.
- You get some extra fail for having come to a conclusion about neuronal activity (“too many quiet-making cell things!”) in autistic brains that makes basically zero behavioral/phenomenological sense.
- Oh, plus you get EXTRA extra fail for ignoring the fact that a huge number of the most common comorbid diagnoses among autistic people are known to involve atypical GABA/glutamate levels that are the literal inverse of the GABA/glutamate imbalances your article describes. Epilepsy? Schizophrenia spectrum? ADHD? Yup. Yup. Yup. Oh, just go home.
- “[A]n imbalance of excitatory and inhibitory neurons.”
- I can’t believe nobody had ever thought of using miniature neuronal Chia Pets as model organisms before! [sarcasm]
- I’m especially impressed with the way you boldly extrapolate your findings about Chia Pet GABAergic neuronal proliferation and apply them to the autistic brains of children and adults as well. [sarcasm]
- Your experimental model clearly provides data that is generalizable to all stages of neurological development [more sarcasm], since GABA/glutamate signaling is:
- 1. Definitely not shaped by pre- or postnatal environmental factors at all! [100% sarcasm]; and
- 2. Also definitely not affected by any of the systemic neurochemical/hormonal changes that occur during human childhood and adolescence [prime, high-quality sarcasm].
- Another hint on reading BrAiNsCiEnCeZ critically: If a neuroscientist (or geneticist, for that matter) ever claims to have “fixed” a complex neurological/cognitive Thing just by suppressing “a single gene,” there’s a really good chance that you don’t need to bother listening to anything else they say on the matter. See also: An article author/science person you’ve encountered sincerely likes behavioral genetics? DEAL. BREAKER.
- I’m skipping over the next few positivist, pathologizing, vaguely eugenicist mini-crap-paragraphs because they’re not worth my time. Plus, I know there are a few TRUE GEMS waiting for me near the end of this…
- Cool, cool, getting pluripotential cells from skin cells, big whoop, I’m bored.
- Your. Autistic. Sample. Size. Is. Four.
- four. BOYS.
- AND YOU PICKED THE FOUR AUTISTIC SUBJECTS BASED ON THE FACT THAT THEY’RE ALL SUPPOSEDLY MACROCEPHALIC? ARE YOU SHITTING ME? LIKE, SERIOUSLY. I WANT TO KNOW. I WANT TO KNOW IF YOU KNOW THAT IT ISN’T 1995 ANYMORE.
- They describe macrocephaly as “a unique characteristic typical of those with severe autism.” And, you know, determining which characteristics really define a high-prevalence, behavioral diagnostic category can be really tough. But you can’t go wrong as long as you focus on a trait that is consistent, diagnostically-relevant, and rare/nonexistent in the NT population–like “Having A Weirdly Big Head,” for example [sarcasm].
- “Having A Weirdly Big Head” is a great choice [sarcasmz] because:
- 1. Everyone who’s really autistic has a weird big head [whoa sarcasm];
- 2. Having a weird big head qualifies you for an autism diagnosis [very sarcasm]; and
- 3. While some neurotypical people might have heads that are objectively “big,” several research studies have confirmed that only autistic people exhibit weird big-headedness [peak sarcasm].
- “To create a batch of typically-developing organoids, they used skin cells from the autism patients’ unaffected fathers.”
- I actually laughed out loud when I first read this, and it will be funny to me forever. Forever funny. Forever.
- “Do you need obviously, 100% NT control subjects for your autism research? Just recruit the parents of autistic children! They are all totes guaranteed to be super socially normal people who are not at all autistic.” [sarcasm]
- Kudos to the researcher for clarifying that like, the cells they use aren’t completely pluripotent, and therefore they can’t actually produce all the tissues and structures that an actual brain would be made of…But like, I’m still waiting for the part where someone acknowledges that you can’t build, or “grow,” a decontextualized, disembodied brain, period.
- I’m going to ask these people once, and only once: Slowly back away from the insulting computer/programming metaphors. Slowly. Back. Away.
- “‘Sometimes you don’t see these things unless you look for them,’ she said in the interview.”
- There are so many jokes I could make here. But I am so tired.
- Though I imagine that it’s true: very few people would have looked at the state of autism science today and thought to themselves, “You know what this field needs? Miniature Chia Pet Models Of Embryonic Neuronal Growth Built On Three-Dimensional Scaffolding!”
Yeah, I’m just done here. That is all. I’m done with this thing. I have enjoyed myself, and now I am done.
(One last aside: Obviously, I have nothing against like, these kinds of research–those that either grow, or simulate the growth of, organs using three-dimensional scaffolding and pluripotent cells–in general. What I have a problem with is when researchers feel completely comfortable using this kind of research to make claims about entire groups of people diagnosed with one of the most diverse and socially-inflected “behavioral disorders” in existence.)
Once upon a time, there was this damn test invented by the Baron-Cohen Lab meant to measure an individual’s ability to read emotions from facial expressions. It was kind of a silly explosion. It’s real-life name is the “Reading the Mind in the Eyes Test,” and as of right now, GoogleScholar says that it has been cited over 2100 times since the “revised” edition was published in 2001. I have always been somewhat skeptical of this test, which 1. Contains only photos of white people, and 2. Includes only photos of young, heavily made-up, conventionally attractive women, whose expressions (according to the test) are “flirtatious,” “fantasizing,” “desire,” or “interested.” In case you aren’t familiar with the work of the Baron-Cohen Lab, they’re responsible for everyone’s favorite “Extreme Male Brain Theory” of autism.
So Dani and I thought it would be fun to get a few snarky/funny autistic women together to…give our more candid assessments of images from this test. The multiple-choice format of the original really cramps one’s style, you know? So I picked out a couple images from the original 36-image test (way. too. long.) and we asked a few friends to look through and give their best guesses as to the “emotional state” shown in each photo. Dani and I contributed as well, and then I went through and added the “correct” answer for each photo, according to the actual test.
This finished product is brought to you by me, Dani Alexis, Kassiane (Neurodivergent K), Melanie Yergeau, and Ibby Grace. And serious intellectual work. Very, very serious things. Seriousness. Critique things. ENJOY.
Emma: The oldest and saddest Keebler Elf in all the land.
Melanie: Is this Frasier’s dad?
Dani: If it is Frasier’s dad, why does he look so sad? OMG, DID SOMETHING HAPPEN TO EDDIE?!
Actual Test Answer: “Upset”
Dani: I knew it. Eddie’s dead. I’m so over this show.
Ibby: “How ‘bout this time: Did I do it? Did I raise one eyebrow by itself?”
Kassiane: Sad puppies envy this guy’s eyebrow game though. look at that.
Dani: “I asked for Audrey Hepburn eyebrows. Can you believe this is what they gave me?”
Kassiane: “Not actually interested in you, but if I laugh I may cry & this eyeliner in the eyes is the actual worst. So I’m just gunna keep staring & hope you go away.”
Emma: I believe this is a picture of that subtle, female emotion called “mascara.”
Melanie: “If I blink, I might die.”
Actual Test Answer: “Desire”
Ibby: “We all know you’re the one who farted, so you can quit pretending to sniff the room now.”
Dani: This is the “human eyes” equivalent of that life-essence-sucking machine in The Dark Crystal.
Emma: “I am a man with a dark side…No, literally, one side of my face is dark.”
(Emma: WAIT DANI I JUST REALIZED WHAT FIZZGIG [one of dani’s cats] IS NAMED AFTER. wow it has been a long time since i saw that movie.)
(Dani: YES HE IS A FRIENDLY MONSTER)
Melanie: This isn’t a face. It’s a topographical representation of the Canadian Cascades, with eyeballs superimposed over the mountain terrain.
Actual Test Answer: “Insisting.” (Emma: EWWWW)
Ibby: “Where did I put my contact solution?”
Kassiane: Don’t blink. Don’t even blink. Blink and you’re dead.
Dani: “This party is never. going. to. end.”
Emma: “Oh, yes. I am absolutely making sex eyes at you right now. These are the eyes I make about sex. With you. In fact, I’m thinking about having sex with you so intensely that I wouldn’t be surprised if my eyes closed completely, like, really soon. Just so you know.”
(Dani: “Also, I cannot believe she married him. Seriously. What.”)
Melanie: “Guess what letter of the alphabet my name starts with.”
Ibby: “Do. Not. Sneeze. Deep breath. Don’t sneeze.”
Kassiane: No dude, I am not interested in you. How bored do I need to look for you to go away? Please just get the hint and go away without getting violent or pissy thank you?
Actual Test Answer: “Fantasizing.”
(Dani: The fact that Baron-Cohen keeps confusing “the glazed look women get when they want mansplainers to go away” with “female sexual interest or desire” says more than I ever wanted to know about Baron-Cohen’s dating life.)
Melanie: “I don’t always stare longingly into the distance, but when I do, it’s for manly things, like science, or hamburgers with doughnuts for buns.”
Dani: “You remind me of my dog I had when I was a boy. He was a good dog.”
Emma: “My name is Captain Cowboy Marlboro-Man Hemingway, but most people just call me ‘Dick.’”
Ibby: [Crunch] “Goldurnit. That’s the third pair of sunglasses I sat on this month.”
Actual Test Answer: “Despondent.”
Dani: If my cat were a human, this would be his expression whenever he saw us roll out the vacuum cleaner.
Emma: The Shifty Smize: Trademark Facial Expression of the Bush Administration.
Kassiane: “oh no, someone has noticed office supplies going missing. do they suspect me? no no no play it cool, play it cool”
Melanie: “My name is Eyes McEyebrows, and I approve of this message.”
Ibby: “Are you going to eat that last slice?”
Actual Test Answer: “Cautious.”
(Emma: Dani, your cat-reading game remains hella strong.)
(Dani: Husband calls me the Cat Whisperer. I’m actually just fluent in Cat. Cats don’t give a shit about your social niceties. Cats say what they fucking mean. PS: We call the vacuum cleaner “The Dread Sword Kittensbane.”)
Melanie: “My expression is so important that the background behind my head has been photoshopped out of this image. Spoiler alert: There were unicorns involved, and we all know that unicorns disproportionately impact observer bias.”
Dani: “Were THESE the Audrey Hepburn eyebrows you were looking for? Yeah. Yeah, they were.”
Emma: “I was looking at something else, and so I have oriented my body so that it is facing the thing I was looking at, but now I am glancing at you out of the corner of my eye, so that I don’t have to actually turn and face you to determine what random fucking thing you’re doing.”
Ibby: “Tell me one more time you want to ‘get you some of that’.”
Kassiane: “I am Bored White Woman Number 3.”
Actual Test Answer: “Interested.”
(Dani: But when *I* give people this side-eye (in order to see them better, ‘cause for some reason my visual processing doesn’t work straight-on), I’m “shifty” or “have an attitude.” Clearly I need to up my “smoky eyeliner” game if I want to indicate “interest.”)
Melanie: “It was I who ate the rest of the cereal. I, the one who cannot be bothered to say me.”
Emma: “VELVET THUNDER.”
Dani: ALEISTER CROWLEY
Ibby: “No really. It was my great great great grandfather modelling on the dollar bill. Here look: I’m the spitting image.”
Actual Test Answer: “Serious.”
Melanie: My gaze suggests you should click this link.
Emma: I see your link, and raise you another link.
Dani: Seriously, though, I think the only reason I’m reading this as “desire” is because I myself yearn for such mad eyeliner skillz.
Kassiane: I swear this is the same woman as a few pictures up.
Ibby: “Good Seasons Italian Dressing is…delicioso!”
Actual Test Answer: “Flirtatious.”
Just, you know, so we’re all clear on the details: The full, 36-image version of this test has been cited over 100 times a year since 2001, contains entirely white faces, and features multiple other female photos that the test asserts show expressions like “desire,” “interested,” “flirtatious,” and so forth.
YEAH DAMN DAT SOME REAL SCIENCE U GUISE.
This is a fizzgig.
This is the Fizzgig.
see my first post here!
see dani’s response here!
this is a “response” to dani’s response.
note to dani: if we don’t start ordinally numbering these soon, shit’s gonna get rough. also like almost this entire post is me being me, aka tangential, so like…please keep talking about the autistic dating guides, if that’s what you’re still on, because there’s so much more to still pull out of those. it’s just not what my brain is doing right now, ya know? i love this back-and-forth format, because it allows me to like, blah blah blah in my own random rants, and then you can blah blah blah in your own random rants, and they’re related, but we don’t have to go in straight lines. you know how i feel about lines. and straight things, for that matter.
while i agree with you that there’s nothing specifically “aspie” about the kinds of normalizing instructions that those dating books contain, i do think it’s important to talk about all the ways in which the “white, straight, aspie dude” identity they’re tapping into makes use of aspects of “neurodiversity” rhetoric in really gross, misogynistic, elitist ways. there’s a number of useful connections to be drawn between the pop cultural aspects of “white male aspie identity,” the emphasis on “genetic,” “hereditary” autism within aspie neurodiversity rhetoric, and retroactive diagnosis fad frenzies (which are almost always entirely made up of famous affluent white male “geniuses”) etc. [there’s an entire part of this rant having to do with ‘genetics’-obsessed ‘neurodiversity advocates’ that i’m not writing out right now, because it’s a bit too tangential for today]
i’m specifically referring to that vein of not-really-disability-history that goes around shouting “hey, it doesn’t matter that you think we’re socially awkward, because socially awkward nerds like RUN THE WORLD and all the best people in history were actually like us, not like you boring people! YOU’D ALL FAIL WITHOUT US HERE TO BE SMART AND DO THE SMART THINGS FOR YOU.” these same dudes then tend to also want to appropriate the history of “eugenics” and describe themselves a persecuted population, or a population that needs to “get human rights finally!” despite the fact that up until about…fifty or so years ago, most affluent white dudes with “aspergers” style diagnoses would not have been considered “defective” or “disabled” or “crazy” at all. really, it’s via the process of “retroactively diagnosing” famous iconoclasts/innovators from white western history that the aspie dude even manages to establish himself as a member of a “select” or “atypical” or “misunderstood/unappreciated” historical population! without their own selective list of “unusual” famous historical figures to identify with, they’d have to fucking admit that their historical counterparts were mostly normative, privileged white dudes fucking other people over like all the rest of their bros.
and that whole “WE ARE THE PEOPLE WHO HAD ALL THE IMPORTANT IDEAS/INNOVATIONS” spiel that these dudes get into is TOTALLY part of their particular attitude towards women, where they’re like “it doesn’t matter how gross or awkward you think we are, you just don’t appreciate our brilliance and importance, so if you don’t love us, you’re being privileged and discriminatory!” (note the number of parallels between this attitude and dudes who feel the need to play “devil’s advocate,” in every discussion: no matter how upsetting it is to other people, and no matter how many times people tell them that what they’re doing is unnecessary, such dudes are convinced that no conversation can really have practical or intellectual value unless they’ve “fact-checked” it and “challenged” it by being an uninformed, entitled asshole).
the irony, of course, of a bunch of nerdy white dudes telling other people (especially women) that 1. all of history was actually them and 2. normal stupid (especially female) people need them even if they hate them, because they do all the important things, and THEN ALSO being like “BUT WHEN YOU COMPLAIN ABOUT HOW I BEHAVE, OR TURN ME DOWN, OR DENY ME LITERALLY ANYTHING, YOU’RE DISCRIMINATING AGAINST ME AND MY HISTORICALLY OPPRESSED IDENTITY” is….well, that shit is fucking rich.
GAY GAY GAY GAY GAY GAY GAY. TRANS TRANS TRANS TRANS TRANS TRANS. AUTISTICS.
so like, to reiterate what you (dani) said, like…autistic people are, as a group, exceptionally likely to be gay/queer or trans. (NOTE: straight autistics, now would be not the time to respond/comment being like “there are straight autistics too! things are hard for us too!” because, breaking news: we know. we like really, really already know.)
a very common thing in see goes as follows: an adult (often a parent, but sometimes an autistic adult) discovers one or more of the scientific studies on the correlations between autisticness and either queerness or trans/non-binary gender identities. they are like “oh my gawsh, we need to talk about this correlation! what do you all think! whoa!” at this point, the actually queer/trans autistic people sit and roll their eyes together, because this is only news if you don’t already know lots of queer/trans autistic people.
and, to be clear, at one point the other day, dani and i were talking about this stuff, and paused for a moment to see if we could think of autistic adults that we knew personally who were cis and straight. we limited it to people we know freals because we weren’t big on going around guessing the identities of strangers? anyways. it was a long pause. long. very, very long. it’s actually a still ongoing pause. that’s how gay and trans our autistic friends are. i might not have the most representative autistic friend group of all time, given that like…portland, or plus smith fucking college equals rainbow/LGBTQ explosion? but like, dani lives in the midwest and married a straight dude, so she totally counts.
i have a joke about the queer/trans identity-autism connection. it goes like this: “breaking! scientific! news!: people whose experiences/needs don’t conform to normative societal expectations ARE AT GREATER RISK of having experiences/needs that don’t conform to normative societal expectations.”
in other, quite timely, autism-and-gender news, repeat offender simon baron-cohen has just out-simon-baron-cohen’d himself.
if you go back to my very first “autism science comedy hour” post, and look at the last theory i made fun of (crespi and badcock. yes, badcock. and yes, jess had to point the name out to me before i even realized it was funny), you’ll see like…the worst fucking sexist autism theory/diagram of. all. time. it’s that whole “autism and psychosis as diametric gendered opposites in the brain” bullshit parade. i’m not going to talk about all the reasons why the theory is bullshit, because there are so many, but here’s a short overview: 1. history of autism and psychosis/schizophrenia research says FAIL. 2. people! actually! have! both! all the time! 3. LITERALLY DRENCHED IN SEXISM. DRENCHED. DRIPPING SEXISM. 4. the science is also terrible, and embarassingly outdated, but that’s pretty beside the point.
so like, obviously simon baron-cohen encountered this theory, and was like “this theory is so sexist, i must do research to support it!” because less than ten days ago, his lab published an article claiming to support correlations, within an autistic sample group, between–wait for it–being female, scoring high on the “EQ” or “empathizing quotient,” and experiencing psychosis. so, to be clear, this research is all saying that if you’re a lady who is very lady-feelings according to baron-cohen’s own scale of “person-feelings-mostly-ladies-have,” you’re more likely to have been diagnosed with some kind of psychosis. caption: a screenshot of the top of the first page of baron-cohen’s article, which is titled “Testing the ‘Extreme Female Brain’ Theory of Psychosis in Adults with Autism Spectrum Disorder with or without Co-Morbid Psychosis,” and was published in PLoS ONE a little over a week ago. (the asshole in me is laughing because like, of course this is in PLoS ONE).
so yeah. just…you know…that is something that actually happened. this month.
that’s all for now.
TAKE IT AWAY DANI. TAKE IT AWAY.
This is the first post of what Dani Alexis and I are hoping will be a fun, and constructive series of angry rants. See, we’ve been talking for ages about how much we want to write giant “sex/gender bullshit and autism” super-posts, because we have so much to say on those topics. So when I was considering doing this post (I’d collected the images of E-books a few months ago, I think) for reals, I asked Dani if she’d wanna do a back-and-forth kind of post conversation on the topic, and she was down. I know that I benefit from having some kind of dialogue with another person while thinking, and I tend to get stressed about whether or not I’m “including everything” when writing, so this should be fun and also helpful for me. Plus I mean angry ranting is always a bonus for me. Always.
Caption: An E-book with a white cover and grey/black lettering, titled “Decoding Dating: A Guide to the Unwritten Social Rules of Dating for Men with Asperger Syndrome (Autism Spectrum Disorder).”
Caption: An E-book with a blue and yellow cover, with white lettering, titled “22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know.”
Caption: An E-book with a purple and orange cover, titled “Safety Skills for Asperger Women: How to Save a Perfectly Good Female Life.”
Caption: An E-book with a green cover and yellow lettering, titled “The Aspie Girl’s Guide to Being Safe with Men: The Unwritten Safety Rules No-one is Telling You.”
These are all par-for-the-course books on “autism and dating” (because autism goes on dates, apparently?).
What we learn from this shit:
- Men need help and advice about how to get their (implicitly female) dates to like them, while women need help and advice on how to not do stupid things that are going to get them raped.
- Autistic men must be accommodated by their female significant others, and if their significant other does not accommodate them, it’s because they don’t love them.
- Autistic women don’t have needs, only wishes, and their partners have no idea what any of them are yet.
I wish there was a way for me to express the absolutely minuscule amount of fucks I give about the dating needs of Aspie men without sounding like a really mean person. But I’ve decided that I don’t feel like trying, so I’ll just leave it at this: I really could not give fewer fucks. Ignoring the direct, unambiguous messages that women give them, and acting entitled to their bodies and affection, are not things that an autistic man would do because he is autistic, they are things he would do because that is how our society socializes men to treat women. And I want to ask, now: is it just me, or is the “White Male With Aspergers” stereotype seem constantly defined by his inability to “get girls”? He has a job, usually, and a place to live, maybe even some nerdy friends, but we are supposed to sympathize with his difficulties solely because he “can’t get a date.”
While Dani and I have been talking about this stuff, it’s seemed clear to both of us that the narratives of “normalization” and “development” that we encounter so often in autism discourse are also narratives of gender and sex, often in the most absurdly stereotypical ways. We see how these books present dating as something autistic men must go through as a natural step in life–a guy has to go on dates in order to find a woman who will marry him. The question is not “is there a woman that wants to marry him,” but instead, it is “how does he get through the dating stage in the process without scaring away the women who eventually, will totally want to marry him.” We should note, also, that there are apparently only two states an autistic woman can exist in: she is living every day alone, trying to “keep safe” despite the world around her, or she is already in a relationship with a partner who doesn’t really know her. Guides on how to date, or how to “not get raped,” or how to be the perfect partner, are implicitly (and explicitly, at least in these cases) guides on how to act more neurotypical, just like they are also guides on how to act straight, on how to act middle-class, and on how to act white. We have a model of what it means to be an adult, what it means to have adult relationships, what it means to live a fulfilling life, and these models of how life should (must) progress are supremely destructive.
So most of us don’t even get a chance to be included in the narratives of success and maturity that our white, male peers are expected to live out–but somehow that does not prevent us from being made to think that our safety and value is determined by how closely we can make ourselves resemble said narratives. We just play different parts, is all. In a story where a man needs a wife, and married life is the only acceptable way for a woman to live as an adult, an autistic woman learns to enter into relationships with men because men need wives, and the only way she will be able to live “as an adult” is if she marries a man. Her autisticness is cited as the reason she cannot afford to live on her own, or with anyone besides her parents or spouse, and simultaneously provides ample justifications for the abuse and emotional manipulation that her caregivers or spouse may exert. She is told that nobody would have to yell at her if she could just make dinner like she was supposed to, that nobody would have to hurt her if she wasn’t so bad at having sex, or that nobody else would tolerate someone as messy and useless as her.
When you teach boys and young men (autistic or otherwise) that anyone who fails to accommodate their needs is a bad person, and then turn around and teach girls and women (autistic or otherwise) that they aren’t allowed to have needs, you are helping make sure that we will continue to live in a world where women are constantly blamed for their own sexual assault, and where men are trained to be so worried about their masculinity that they are unable to admit that they have hurt others, or that others hurt them. And autistic people are supremely vulnerable to this kind of manipulation and socialization, in part because these kinds of stories and lessons about “adulthood” and “independence” fill our lives, and are not in any way limited to the sphere of relationships and dating.
When you have lived, for so many years, according to lists of behaviors, rules, and skills that you’ve been told you must do in order to deserve safety, sustenance, love, and self-determination, it sometimes is easier to feel safe (for a moment, for a day, maybe). But these lists of “rules” are always coupled with the–conscious or subconscious–knowledge that the only reason people had to tell you these rules in the first place is because you suck at following them. This is how your pain and your punishment are justified: there were rules, and you did not follow them, and the only way to teach you to follow the rules is to punish you when you break them.
You are not allowed to need help cooking food for yourself.
You are not allowed to not like sex.
You are not allowed to dress in “unflattering,” “unprofessional” clothes.
You are not allowed to hate being touched.
You are not allowed to not like men, especially not men who say they like you.
I just wanted to say to people like me, maybe even the kinds of people who’d end up reading books with subtitles like “The Unwritten Safety Rules Nobody is Telling You”: There are no unwritten safety rules that nobody is telling you. There is no special set of rules that you can follow that will keep people with power from hurting you. This is the scariest part, sometimes. To discover that no matter how “good” you are, no matter how well you follow the rules, your compliance will not always protect you. But this also means that there is no justification for the way you have been hurt and manipulated. You did not do things to deserve it.
And I wanted to say to everyone else: Stop teaching us (women, autistic women, autistic people, autistic queers, and so on) that we only have “wishes,” while people with authority have “needs.” Stop teaching us that if we don’t respect everyone else’s needs above and beyond our own, it’s because we don’t really “love” them.
Wait with bated breath for Dani’s reply! And then my reply to Dani’s reply! We have way more thoughts about this, like seriously, this is something we talk about without end. We want to talk about queerness, trans-ness and autisticness; we wanna talk more about developmental narratives, and we really, really want to talk about the incredible amount of overlap between “Dudes with Aspergers” and “Dudes with Serious Cases of ‘Nice Guy’ Syndrome.” We have lots of stories, our own and other people’s, to tell. So stay tuned!
(note: this is satire. for examples of what i am making fun of, go to google, or any online news platform, and search for “gut flora” or like, anything involving “neuroscience” and your goddamn body.)
in excite turn of events, nurr-o-science finds out that there is body also in head. also tummy touches this part of body, called “brain,” like character from arthur.
they found there are also tummy and then sometimes arm, leg, and breathing bags. “this is very excite” say lead nurr-o-science-face stephen pinkbutt. “who knows what happens when body affects other parts of body place. maybe magic. maybe sex because evolutionary psycholo-fuck-y.”
other nurr-o-science-faces also excite because tummy flowers. they are small but they exist in tummy. (technically there are flowers everywhere because back-teeriums are basically flowers rite?) so it possible that when sick the sick is a feeling that happens in that part of ur body behind ur face. “if sick tummy affect brain,” say other science-face, “this change everything in world. it completely new informations.”
a while back, i saw a post on Diary of a Mom’s Community Support Page that i thought i could answer pretty well. i’ve wanted to re-post my answer here for a while. all the context you need to know (the posts are still on the Support Page, but i prefer to give as little information as i can while still giving sufficient context for my answer to make sense) is as follows: a great mom of a spectrum kid was struggling with the news that her other child had received diagnoses of OCD and bipolar. she feared the effects stigma would have on his life, and was worried about how he’d be treated (not to mention potentially medicated) by doctors, especially given that he is still relatively quite young. here was my response:
I’m “emma at lemon peel” over in Jess’s list of “autistic adult blogs” to the side there, and in addition to taking a number of medications (a couple for ADHD, a couple for anxiety/depression) at the moment, I also happen to be a giant psychology, diagnostic theory and pharmacology nerd. It’s…something of a special interest, to put it lightly. And I can try and share what I hope is some concrete support/advice you’ll find constructive or helpful.
When it comes to dealing with powerful, complex medication possibilities and children, a few important things come to mind first for me:
Medication should always be about helping the medicated person feel more safe, more comfortable in their own body/head, more able to engage and participate in the world in the way that they want to. Most psychiatrists aren’t great about this–for those with “behavioral problems” in particular, there’s often a focus on normalization, and/or on reducing those behaviors make the caregivers and physicians feel stressed or uncomfortable. And when the person being prescribed medication is a kid–not to mention a kid with developmental differences–it’s even easier for parents and doctors to feel comfortable making medication decisions for the patient.
Also, your gut feelings concerning the medications and treatments specifically employed to treat bipolar spectrum/behavioral issues are entirely justified. I have a large number of friends who are my age (college-age) and bipolar, and finding the right medication regimen (if medication works at all) continues to be a complicated, often unpleasant process for them even as young adults. The medications in question are numerous, diverse, and often powerful in their ability to help people live their lives, and in their ability to cause side-affects that suck.
All that said, these are some things I know that can help/be done to make this as positive and constructive a process as possible for your family in general and your son in particular:
1. As much as you can, engage your son in the process of figuring out what supports and/or medications–if any–make him feel better, and which do not help, or make him feel worse. Make sure he knows that the reason you and his doctors are talking to him about possibly taking medicine is because all of you want to help him with things he struggles with, and with experiences he finds scary, painful, or confusing. Even ask him, if he’s willing and able, what parts of having his brain and his body are the hardest, or the biggest problem from his perspective. And if/when he tries a medication or other treatment, check in with him about how he is feeling, talk about any changes you notice, or he notices, in his emotions and behavior. Make sure he knows that when it comes to determining whether or not a given treatment/medication helps or hurts him, his opinion is the most important opinion. Figuring out medication, especially, is a process, and that process can start at many different times in a person’s life–trust your gut, and your kid, and together you’ll be able to stand up for what you think is or isn’t necessary at this point in your lives.
2. You mention that (his other bio parent) also received a bipolar diagnosis. Obviously I have no idea what you and your son’s relationship with him currently is, but I do know that when it comes to psychopharmacology, knowing what medications worked for a parent (or sibling) can often make finding the right medication a much quicker and easier process. If he, your other child, or any of your son’s other close biological relatives have taken medication for bipolar spectrum disorders, and had good experiences with one or more specific drugs, finding out the names and dosages of those helpful prescriptions can really help doctors figure out what medications might help your son.
[Real Life Story: My father and I are extremely similar personalities, we’re both on the spectrum, I look just like him, etc. etc. And when I started medication for depression/anxiety, my psychiatrist made sure that the first thing we tried was the medication my father has been taking for depression/anxiety for decades. Not only was that exact same medication life-changing for me as well, it turns out that me and my Dad take the exact same dosage.]
3. Keep your worry and your skepticism close at hand–medication can do great things, but for some people it simply does not help them in the ways they need to be helped. Some of my mentally ill friends take medication. Some do not. Different people need different things. You and your kid are always the best judges of whether or not medication is contributing to, or detracting from, his comfort and wellbeing. Doctors are great resources, and integral to getting access to documentation and lots of supports…but you guys always have the right to say “No, that is not a treatment/strategy we are going to try. No, that is not the problem we need to focus on. No, those are not our priorities.”
I hope that was helpful, and my heart is with you all as you figure these things out. If you have any more questions, feel free to email me at the email address I give on my blog page.