"I think it's probably time to just own it."
February 9, 2020 2:45 PM   Subscribe

Nicole Cliffe, writing in her Substack newsletter, catalogues her childhood ("Childhood was a nightmare. I did so much masking, which I didn’t know was masking until…a few years ago?") and reflects on her hyperlexia, stimming, difficulty with peer interactions and excessive sensory input, and academic career. She concludes, "I am probably autistic." and comments, "I have been saying 'I've got a lot of autistic traits' for a while, I've been saying 'I'm not precisely neurotypical' for a while, but I think it's probably time to just own it."
posted by brainwane (85 comments total) 82 users marked this as a favorite
 
Her post was super encouraging for me to read and I hope it encourages other folks, especially nonmen, to evaluate themselves or have a professional do it.
posted by Sheydem-tants at 3:07 PM on February 9 [5 favorites]


Could I get an explainer on what masking means in this context? Pretty please?
posted by medusa at 3:32 PM on February 9 [3 favorites]


Masking (wikipedia)

“Masking is a process in which an individual changes or "masks" their natural personality to conform to social pressures, abuse, and/or harassment.”
posted by mwhybark at 3:49 PM on February 9 [26 favorites]


Meeting my maternal extended family was revelatory for me. My uncle is hyperlexic, my cousin is hyperlexic, and so am I. Multiple people in the family experience dyscalculia of varying intensity, most commonly expressed as an inability to reliably distinguish certain binary relationships, such as left and right. And on and on.

I looked around at the people I had had the most success building relationships with, and it was a moment of clarity in which a half-glimpsed hypothesis flips into obvious truth.
posted by mwhybark at 3:53 PM on February 9 [21 favorites]


Thanks mwhybark.
posted by medusa at 4:32 PM on February 9 [1 favorite]


So for a lot of us self-diagnosing autism is the only way we can get any help or function because for those of us who are AFAB professionals are willfully blind to how autism spectrum disorders present in AFAB folks. I was so “obviously” autistic that my current DR was shocked I’d never been diagnosed. But in my youth all my DR’s danced around it- I got diagnosed with basically every co-morbidity but never the A because “only boys get that”. So dismissing self-diagnosis is really ableist.
posted by Homo neanderthalensis at 4:32 PM on February 9 [63 favorites]


Also at this point I could go in for formal diagnosis but A) a lot of places refuse to do the testing on adults and B) I don’t have the $$$.
posted by Homo neanderthalensis at 4:33 PM on February 9 [4 favorites]


Can someone else take the “autism presents very differently in women, they’re just figuring out how differently, everything you think you know was studied in boys, stop gatekeeping autism” baton today, please, I am very tired
posted by schadenfrau at 4:33 PM on February 9 [61 favorites]


Heh should have hit preview
posted by schadenfrau at 4:34 PM on February 9 [1 favorite]


Like I didn't talk at all except for nonsense syllables til I was 3, taught myself to read at 3.5, got diagnosed with sensory processing disorder at 4.5, was taught how to control my “excessive hand movements” (stims) had massive OT for that and other things til I was 10, was given fidgets toys- had massive food aversions and meltdowns- and I still can’t make sustained eye contact for long without going into flopsweat. But no I must be ADD or bipolar because not boy. Queue years of medications I didn’t need because I didn’t have what they’re supposed to treat. Self-diagnosis gave me the grit to demand the right medications and therapy and get off the bad ones. But I guess I’m not “really” autistic.
posted by Homo neanderthalensis at 4:43 PM on February 9 [30 favorites]


You can't really self-diagnose autism

I'm no longer sure why not. What does a doctor do to diagnose that isn't just assessing a questionaire?

genuine question, unfortunately - my personal diagnosis seemed just a rubber stamp
posted by solarion at 4:44 PM on February 9 [20 favorites]


[one comment removed - let's not derail this into whether self-diagnosis is valid, it's generally accepted to be within the autism community]
posted by jessamyn (staff) at 4:45 PM on February 9 [32 favorites]


Professional diagnosis of autism in adults is often hard to get. In the US, the assumption is often, "if you have a job and some friends and your life is not falling apart, why would you need a diagnosis?"

The tests that exist are skewed towards identifying autism in men - or rather, boys; adult women often have different symptoms. And even as children, they go undiagnosed, because "quiet, reserved, doesn't make eye contact, no interest in talking to strangers or participating in team events" are not seen as medical symptoms in girls.

Saying "self-diagnosis isn't valid for autism" is no more reasonable than saying self-diagnosis doesn't count for depression (If the doctors insist she's not depressed, there's no way she'll harm herself, right?) or debilitating menstrual cramps. (There's no way it hurts more than appendicitis, right?)

The medical industry routinely ignores women's pain, both physical and mental. Individuals with symptoms may not be qualified to make a detailed diagnosis, but they can damn well say, "something is very wrong here, and I am going with the label that makes the most sense until I get a better one. That 'better one' is not going to be 'ah, you're just being whiny.'"
posted by ErisLordFreedom at 4:45 PM on February 9 [68 favorites]


It's probably worth linking the most recent MeTa on neurodivergence, because I think the consensus amongst autistic MeFites is that you can self-diagnose, and that adult diagnosis is hard enough for most people to get (I was a) a mess, b) pretty articulate c) male and d) working for the diagnosing organisation when I got mine), that it's often necessary to self-diagnose.

Also, I'm glad for Nicole. She feels exactly like the advocate autistic people need, and I'll admit to having thought it for a while that she seems like she fits the diagnosis. Some of the kindest and most supportive networks I see online (mainly on Twitter) are autistic women diagnosed in their 30s and 40s, and they're there, making each other's lives easier in the way that they never thought that lives could be easy and liveable and natural. As a man, I look on with envy, and hope to create male online and IRL communities where we use our autism to support each other, and eventually build places which are supportive for all genders.
posted by ambrosen at 4:55 PM on February 9 [25 favorites]


Hi, I diagnose autism professionally (under supervision, but I've never had my suggested diagnosis contested) and I support self-diagnosed autistics.

I go back and forth between calling myself autistic and just “neurodivergent,” mostly because I generally work with young boys, which makes me go, “Oh, that’s not me.” Except then every so often I work with a young girl, and I go, “Oh, wow, you’re just like me when I was your age.” And recently I’ve had the opportunity to work professionally with a few autistic young women and it’s... eye-opening. I interviewed a young woman for a mentoring program the other day; my supervisor won’t let me be her mentor because we get along too well and "you'll just talk about [shared special interest] and not get anything done." (She said this with love and understanding, she still wants me to work with her in a less official/organized capacity, no ill will towards her.)

I'm no longer sure why not. What does a doctor do to diagnose that isn't just assessing a questionaire?

For younger children there are a variety of structured scenarios the clinician takes the child through to assess social communication and behavior. For adults it's essentially an interview + behavioral observations, yeah. Theoretically you can compare responses against normative data, but that requires converting someone's words to numbers and that's always fraught anyway. Especially because the norms largely come from data on white boys/men.
posted by brook horse at 4:58 PM on February 9 [37 favorites]


I’m a 50-something woman who was Hyperlexic at a young age, has some forms of dyscalculia, is always playing with my hair and fingernails, and comes from a family where every male member has weird social skills and intense obsessions with some specific topic. The last few years I’ve been starting to wonder if I’m spectrum-y myself. I don’t know what the next steps would be for getting a diagnosis or what it would do for me though.
posted by matildaben at 5:17 PM on February 9 [1 favorite]


I don't want to step on anybody's toes RE: self-diagnosis but I do feel like it's important to recognize that there are other ways of being neurodivergent besides being "on the spectrum" - even if some of them have traits in common. It's tricky to talk about my personal deal about this because I don't want to offend anybody who does identify with the autism category - it just bugs me sometimes the way that category seems to have expanded in the public imagination to subsume everything else.
posted by atoxyl at 5:50 PM on February 9 [20 favorites]


This is one of those times when I want to kick myself for using a handle on Metafilter that traces too quickly to my name. So I'll keep it vague.

Once people are in their late 30s or beyond, at least in the United States, very few of them can benefit in any material fashion from a piece of paper calling them autistic. Thankfully, there are clinicians out there who will (for example) write up about you having an anxiety problem that needs treating, and acknowledge to you, only in conversation, that the reason you have an anxiety issues is that you're autistic and your difficulties with the world are giving you reasons to be persistently anxious.
posted by ocschwar at 6:17 PM on February 9 [35 favorites]


brainwane, you have a knack for posting things to the blue exactly when they are most germane to me. Thank you.
posted by eirias at 6:20 PM on February 9 [8 favorites]


Ocschwar- that is my EXACT deal with my DR. Even now that I’m off anti-anxiety meds.
I’m a patient for “anxiety”. And if half my therapy is for developing stratagem for social
Interactions, finding alternatives for involuntary movements and tricks for faking eye contact (among other things) well. That’s what it takes to treat my “anxiety”.
posted by Homo neanderthalensis at 6:27 PM on February 9 [11 favorites]


eirias, that's wonderful to hear, and makes me feel better about posting this to the blue 2+ weeks after Cliffe published it!

(People who want more posts about disability and related subjects on MetaFilter: there's a MetaTalk about that. People who want to hang out and talk with other MeFites about disability, neuroatypicality, and related topics because they affect you: there's a MetaTalk for that, and a Slack groupchat starting as well. More discussion about those should probably go in the relevant threads on the grey.)
posted by brainwane at 6:44 PM on February 9 [16 favorites]


Getting my daughter a diagnosis took much longer because of her gender. One doctor said that they didn't usually diagnose girls, that the diagnostic criteria for girls was unknown so why test her and - it was just very frustrating. What helped was saying at last "I'm a woman with autism, and there is a family history" and she was diagnosed almost immediately when we finally got to see the specialist.

It's actively harmful to get diagnosed here in Singapore as an adult. You become ineligible for a lot of private insurance and it goes on your medical records in a way that's unhelpful. My current psychiatrist said he didn't see a point in my getting a formal diagnosis although he agreed with the diagnosis and takes it into account.

One thing I wondered if other women delayed in diagnosis - I took the criteria tests and would come back with a score well into the normal range. Then I realised I was supposed to answer with what I actually felt, not what I was capable of doing and my score shot way up to the other end.

I will always be grateful for the massive People of the World (?) magazine series my parents subscribed to in the 1960s-70s which did anthropology/national geographic stories on cultures around the world and gave me the vocabulary and framework to imagine I was a tiny anthropologist working to understand and live with foreigners.
posted by dorothyisunderwood at 7:32 PM on February 9 [38 favorites]


I took the standard test and ranked as probably on the spectrum. My friend thinks the test is shit, because "if he was "in the middle" then anyone was on it. I advised he probably has some traits, but his value was still not that top tier. I was in the low end (sorry can't remember what the values were) where I was in the upper x% and most likely as autistic.

But to be diagnosed you have to have dysfunction. I'm medicated on Effexor to deal with my anxiety, but I still generally stay indoors and do not like being in public. Being obese and out of shape adds to that effect (sweating, breathing heavy, it's ugh...)

My nephew has been diagnosed since he was very young (like 2-3 years?) My dad has always had certain traits and things that I considered abusive (and were, frankly... I won't let it be completely excused), I see now as his own inability to cope with certain changes. He would "snap". I also "snapped" for different reasons, and usually it wasn't violent, or if it was, just like dad, it tend to be against objects, not humans. But it was there.

I came to admit that I'm on the spectrum, but I won't say I'm autstic (HFA or Aspie, even, despite the common joke of nerds being Aspie). I'm medicated enough and treated enough that the worst impulses of my sensitivities are dialed back that I'm "functional enough" but do I "mask"?

I think so. Part of my anxiety stems from constant self containment. (At least based one what the comment above defined as masking from wikipedia). I hold myself in, like a ball of energy. Strangely I'm very empathic and perhaps that's due to me overreading (maybe my empathy is wrong. but it makes me hyperaware of people's states). But I often misread people as well (especially when a lot of it is anxious self-blame - "are you mad ate me? do you dislike me?"). IDK. I used to be a lot more open, but I realized that was me not being aware of certain social cues, and once I hit 6th grade, I think I saw a certain look of a classmate that "put me in my place" and made me hyper aware of my place and my "annoyingness" to others. My friend said that classmate was just a jerk in general, when I mentioned this years later. But I still think there was something there that was valid in terms of my own actions and being.

So I can relate to this "coming out" but I'm not sure I can fully say that I am. If effexor wasn't mediating my negative effects, I think I would just say Yes, I am definitely autistic. But the SNRI modulates the extreme reactions and slows down certain thoughts. Sadly to the detriment of some of the positive aspects (including in some ways things that I would have considered ADHD related).

Maybe I'm self medicating with too much alcohol as well. IDK.
posted by symbioid at 7:47 PM on February 9 [14 favorites]


I’m an adult female. I was never formally diagnosed but I’m pretty sure I’m not neurotypical in some way. It’s actually through reading articles and people’s comments on MeFi that the “quirks,” I’ve had since a kid have made sense. The skin picking, the feeling like I was learning what emotions were by mimicking other people’s, the social anxiety, the taking phrases so literally. In college a professor had to teach me to make eye contact. I got in trouble for these things. It was hard.

I spent years in my darkest moments thinking : something’s wrong with me. I’m broken somehow, and it can’t be fixed. Thank you all for not making me feel so alone.
posted by Pretty Good Talker at 7:51 PM on February 9 [50 favorites]


Part of my anxiety stems from constant self containment.

I hear you. I don’t know where I personally stand with the autism spectrum, but I do know that I’ve constantly been learning of things I did as a child that stand out as possible diagnostic traits. When a therapist gently suggested it once, I became upset because I pictured a number of stereotypes associated with certain stigmatized ASD persons, and I was desperately afraid of what it meant that he could see them in me. But it didn’t mean that at all. I have learned a huge amount in the nearly ten years since then, including that there are no solid answers about this for me.
posted by Countess Elena at 8:43 PM on February 9 [5 favorites]


Hyperlexic, recently scored 38/50 on the Baron-Cohen test, and many of those behaviors have diminished considerably since childhood. I did have some psychological testing when I was a kid, but testing for ASD for any kid with any degree of social functioning basically wasn't done, and some of the psych tests that I had were patently bogus.
posted by Halloween Jack at 9:26 PM on February 9 [3 favorites]


I don't really know what to make of the self-diagnosing thing. A friend of mine self-diagnosed herself and that makes her feel better. I have no effing idea if she is or isn't because I am not an expert on this, but I don't think eye contact is any kind of issue with her whatsoever, so this confuses me a lot. And sometimes she has touch issues but she also has PTSD from abuse as well. Sometimes I debate asking my other friend who has autistic children and has done a lot of work with other autistic children (they don't know each other) what she would think, but so far I have not.

Meanwhile, my shrink has said, multiple times, that she thinks I might be, and I am all "no....I don't think so, I'm weird and I probably have ADHD and dyscalculia but I really don't think I have autism, I don't have eye contact issues or touching issues or stimming, etc.," (speaking of self-diagnosing, eh?). One day just for fun we took some test online about this and ah...yeah, she might have autistic traits but I did not. Hmmmmm?

That said, I don't think there's much point in my getting diagnosed with anything as an adult, especially overall I don't have major issues with this stuff now.
posted by jenfullmoon at 10:43 PM on February 9


the eye contact thing is not universal, and even when it is present the person may have developed workarounds that may or may not be externally apparent.

(...like, say, an autistic woman who spent all of fourth grade spending lunch having staring contests with her only friend, and who invariably lost until she learned to focus on her peripheral vision, and then invariably won...)
posted by Clowder of bats at 10:57 PM on February 9 [16 favorites]


Symbioid this sounds a bit like something I've seen described by friends as Rejection Sensitive Dysphoria, which they seem to find a useful concept.
posted by Coaticass at 11:24 PM on February 9 [3 favorites]


The experiences related in the OP are um, very (like, very) familiar, yet I’d want to be super careful about excluding anxiety (social, GAD, + a touch of OCD, plus I suppose dyspraxia, which I wasn’t ever diagnosed with but clearly applies [unless having visuo-spatial-kinaesthetic development delayed by getting glasses late in the growing up game explains it...]; read at 3, hyperlexia yes; hyperfocus yes, although that could be OCD as well, trouble filtering things out, not so much, issues prioritizing perhaps, ok, sometimes, maybe.)

I mean, some of those are theoretically addressable. Ok, so do I want to pursue a diagnosis where all that is given a unifying explanation and let to stand (self-acceptance, paradoxical freedom from labels), or do I want to continue to not get actually appropriate treatment for the bits and pieces of whatever I haven’t fully accommodated that do bother me (but hope that I someday will [waitlists, $]), or, do I want to alternately entertain and ignore possibilities and never sort it out, idk.

What’s the value in a diagnosis of autism, where there are a bunch of viable alternate dx? Could part of it be, releasing the expectation that you should/could keep trying to “fix” yourself? Are there supports, within ready reach of the average person? (More so than for say OCD?) Excluding the alternatives empirically would be ideal except who’s got the cash and time for the years of therapy required to test that out.

(I realize this brain fart is self-indulgent, and I apologize for that, but I’m leaving it because I’m curious to know if anyone else has had similar thoughts and answered these questions for themselves. I see there was a relevant meta, I apologize if I’ve said anything hurtful, as well.)
posted by cotton dress sock at 12:29 AM on February 10 [5 favorites]


Is it possible to develop symptoms later in life that weren't there in childhood?
posted by Beholder at 1:54 AM on February 10


Ugh, I am still stuck in neuroatypical no-person's-land on this. My official diagnoses are bipolar II and anxiety, but the bipolar really isn't a good fit and a few years ago all the pieces fell into place in my head; the only thing that really makes sense of my lifelong mental health stuff is a combo of C-PTSD and the flavour of ASD that used to be called Asperger's. My AFAB parent also has a ton of autism spectrum traits, but neither of us have a diagnosis largely for reasons related to perceptions of our assigned genders at the times when we were born. My last, best therapist strongly agreed that I presented like the people she'd worked with previously who have Asperger's, to the point that she was going to mention it to me if I hadn't mentioned it to her first.

I asked a GP for an autism assessment back in 2017 and he was very unwilling - he kept trying to talk me out of it by telling me the waiting list was two years long, but if he'd just fucking done it there and then I'd have seen someone last year already. Except he ended the conversation by making me think he was going to do it and then he...just didn't do it.

It would make so much of my early life make sense. Right now I feel like a self-diagnosed fraud and it hurts that I feel cut off from resources and community that could have helped so much in the past (and still could somewhat in the present). I don't want to spend the money it would take to get a private consult because I have been so repeatedly traumatised and dehumanised and dicked around in the course of seeking mental health care already in this life that I do not have the amount of resilience it would take to bash my head against the diagnostic process.

Also my parents were obsessed with projecting normality as a family, to the point that they coached me on reaching developmental milestones as a kid. I think a lot about how different my life could have been if they had just let me fail. I could have really benefited from some interventions at that age, but it was more important for my family system to seem normal than for me to get the support I needed for all the ways in which I was not (and continue not to be) normal. And if I bring it up with my AFAB parent she gets all pearl-clutchy and "well how could anyone have possibly known, it was the 90s, there was no such thing as autism in female people" (not true as I know several AFAB people who got diagnoses as kids around that time), in the same way that she justifies her and my dad blocking my access to mental healthcare as a teenager with "well how could anyone have possibly known, it was the early 00s, no one had mental health back then" (ALSO NOT TRUE) and I just want to curl up in a ball and die of despair whenever I think about the whole thing. It makes me worried that if I do ever pursue a diagnosis as an adult, it won't fly because none of my childhood records, school reports etc. really document any of the differences and weirdnesses about me because the single goal was for everyone to pretend I was normal the whole time.

Anyway this is a rambling stream of consciousness that can roughly be summarised as "I have a big painful pile of feelings about this topic and absolutely nowhere to go with any of them."

p.s. are there any resources on dealing with sensory issues as an adult? everything I can find is aimed at kids or parents of kids.
posted by terretu at 2:07 AM on February 10 [15 favorites]


@Beholder: yes, it's possible. For example I have quite a bit of auditory processing disorder now, and that was less of an issue when I was a kid.

Autist Twitter is super helpful, especially @NeurodivergentRebel, Pete Wharmby, and Lydia X. Z. Brown (whose handles I don't remember). #AutisticWhileBlack is a good hashtag to follow too.
posted by Sheydem-tants at 2:13 AM on February 10 [5 favorites]


And on self-diagnosis, there is evidence that autists generally self-diagnose accurately.
posted by Sheydem-tants at 2:14 AM on February 10 [4 favorites]


I've also had the repeated frustrating experience as an adult where, when I occasionally disclose the fact that I suspect I'm on the autism spectrum (when it's relevant to do so), the other person responses with, "oh, but you're not like [inevitably male person with stereotypically autistic behaviours]." And I want to scream back in their face, "no, because I got aggressively and forcibly socialised not to be like that the whole time I was growing up based on people's perceptions of my gender, whereas he largely got left to be as he is based on people's perceptions of his gender."

Except I don't scream in people's faces because I got aggressively and forcibly socialised not to the whole time I was growing up.
posted by terretu at 2:45 AM on February 10 [32 favorites]


My husband pointed out that I don't make eye contact with people when I talk to them recently. It's been a bit unnerving noticing that I don't do that.

I wonder if I have ADHD sometimes.
posted by freethefeet at 2:46 AM on February 10


I have a friend who was diagnosed with autism as an adult woman a few years ago, and since then I have considered multiple times whether I'm somewhere on the spectrum. All the online tests I've taken have given me borderline results -- I strongly recognise some traits in myself but not others. Recently I watched a presentation by a psychologist discussing how autism presents in women, and while I initially dismissed about half of the behaviours he described as irrelevant to me, I subsequently realised that I engage in some very similar behaviours, or do certain things only in some situations and not others.

I've had some issues with anxiety and possibly depression before, and I've always been a champion procrastinator. A lot of these issues were tied up with a lot of unhappiness in my personal life which has since been resolved, so while there was a moment when I was feeling really down about my life and my ability to be a functional human, and considered going to therapy and seeking some kind of formal diagnosis, the moment passed.

I generally find myself able to cope -- I'm in my late 30s, and I have a lot of well-established workarounds. So I don't feel that I really need a diagnosis. But reading about other people's similar experiences has definitely made me feel better, and made my own mental state seem more explicable to me.
posted by confluency at 4:28 AM on February 10 [4 favorites]


Amazing.
I'm 62 yr old male. Only last fall did my shrink realize, I'm probably on the spectrum. In my case, I have a skill set that is completely misleading.

But a few years ago, I suddenly became scrambled. The autistic community calls it "autistic burnout". It's not documented in the psychology literature, and my shrink wants to supervise me writing a paper. He's a PhD and I'm exceptionally talented in the field myself.

Now, I can be driven completely bonkers, just from having multiple people around me, talking! I also have C-PTSD which can unexpectedly add fireworks. (A place in a park yesterday triggered me by surprise).

Spectrum folks: I've known for a long time that a large number of my friends are spectrum. More reliably nice and non-aggressive, is my idea of why. Non-threatening. I got bullied, a lot.
posted by Goofyy at 5:02 AM on February 10 [8 favorites]


So I had a lot to say about other comments but then I read the actual link, and, you know that moment of recognition where you're like, "I do that, but I didn't realize other people do that?" Avoiding eye contact is one of those things (I stare at the little fleshy bit between people's eyes as an anchor point, which makes it easier to look from one eye to another--and you have to keep your eyes moving because if you just focus on eye contact as a goal, you end up staring, which also freaks people out), but it wasn't until this piece that I realized the whole foot-ravaging thing was a...thing? Is that common? Because I gotta wear socks and apply neosporin all the time; I've had to go to the doc for antibiotics because when I'm under stress, I just destroy my feet (as well as face and scalp but those don't seem to get infected). (Then the added stress of wait, what if I had died of an infection, what if they'd had to cut my foot off, why am I so gross?) I already walk on my toes a lot, and then if in addition I've messed up floor-touching parts of my feet, I end up walking really weirdly because there's just, like, nowhere else on my foot I can walk. I am trying to get better about that, but what are you supposed to tear up when you get stressed? Medical science, why will you not invent an artificial ball of scabs to pick at?

I'm still not diagnosed officially, and still take the firm stance that while your self-diagnosis is perfectly valid, my self-diagnosis is probably fraught with error and selfishness and pleas for special treatment. But then, so many of my official diagnoses were off the mark, that I'm not sure what the point would be in entrusting my diagnosed-identity to someone else. I go through phases where it feels like only psychiatric assessment would help, and now am in a lull where it just seems like a waste of time and money and stress-tolerance. It's not like anyone's going to fix me at this point.

Also above Sheydem-tants mentioned Lydia X. Z. Brown and I want to second that recommendation; it was a transcript of a talk Lydia gave that introduced me to the term gendervague which explained a lot of the confusion and turmoil I've had around gender (and why I feel so uncomfortable in these threads when people say boys have autism like THIS but girls have autism like THAT).
posted by mittens at 5:58 AM on February 10 [20 favorites]


I have felt for some time that the model we have of "on the autism spectrum" vs "not on the autism spectrum" is probably not the right model. I think we are all on a spectrum, one section of which has been designated "neurotypical". Please understand that I don't say this to erase the struggles of folks who identify as autistic, but rather to say that we will all be better off when we can dismantle the structures in place that privilege a certain set of behaviors and skills and ways of being in the world and instead embrace the full range of human experience. I also understand that this is... a stretch goal to say the least.

There used to be this game show called Hole In The Wall (I think) where contestants would be faced with a giant wall moving towards them with a weirdly shaped hole cut into it, and to win they had to contort their bodies to fit through the hole. I often feel like I am just a pretty good competitor in the game of Hole In The Socially Accepted Behaviors, where I can usually contort my thoughts and actions into shape well enough to have a good job and family and... good acquaintances if not friends, but occasionally I get slammed into that wall ("My friends all think you don't like them.") and I am reminded of the game I have to play on a regular basis.
posted by Rock Steady at 6:17 AM on February 10 [19 favorites]


(There are more reactions to Cliffe's piece in the comments on Substack. Only paying subscribers to Cliffe's newsletter can comment (Cliffe invites people who want to subscribe but can't afford it to contact her to get the cost covered) but the comments are public for anyone to read. Many people in those comments are sharing experiences similar to the ones in this thread.)
posted by brainwane at 6:18 AM on February 10 [2 favorites]


My sister is cisgender and autistic, and the last thing I want to do is talk over or one up the medical bias against accurate and accessible autism diagnoses for cis girls and women.

However, getting tested for autism as an adult trans woman was really weird. My psychiatrist wanted to figure out if I was a good candidate for ADHD meds, so he referred me to a neuropsychology clinic for testing.

It was three sessions, with a one hour intake interview, one day with six hours of testing, and a day where they explain the results. I mentioned I was trans in the intake interview, which was pretty much necessary because she was asking about my medical history and childhood. The testing was mostly iq test style stuff, with stuff like rotating 3d objects and reciting lists from memory.

After missing about a day and a half of work, I got my test results, where the neuropsychiatrist gave me the least specific autism spectrum diagnosis she could, and admitted she didn't have much faith in the tests because I was trans. Her reasoning was that because there tests are based off separate samples of men and women, I'm not really from either group medically. She tested me as a guy because "you've only been on hormones 3 years, so your neurology is probably male."

I went along with it at the time, but I'm now realizing that's kind of terrible in more ways than just invalidating my gender identity in a medical context. Rather, the test failed to account for the role I play in society and at work, which is bad for a condition that impacts my social and professional behavior. I'm not going to detransition, so my friends and co-workers aren't going to expect me to act like a neurotypical man.

So... My attitude is that you should probably only get tested if you need insurance to pay for something or to get care.
posted by ikea_femme at 6:33 AM on February 10 [19 favorites]


I've learned a great deal from this conversation -- a sincere thank you to all who are participating.
posted by MrJM at 6:39 AM on February 10 [6 favorites]


(Did anyone get told repeatedly, when they were at elementary school, that they were pressing much too hard on their pencil when writing? Flash memory, curious about the fine motor skills...)
posted by cotton dress sock at 6:51 AM on February 10 [4 favorites]


(haha, soooo many broken pencil leads!)
posted by mittens at 7:06 AM on February 10 [2 favorites]


Medical science, why will you not invent an artificial ball of scabs to pick at?

I cannot favorite this hard enough, mittens. I self-diagnosed myself with ADHD in my 40s, got it confirmed officially, and got medicine that has helped me. I also pick at various body parts. I have no idea why. This was a great post, OP. Thank you!
posted by Bella Donna at 7:14 AM on February 10 [8 favorites]


I also have C-PTSD which can unexpectedly add fireworks.

I think it's extremely difficult to grow up undiagnosed, surrounded by neurotypical people who might as well be aliens, and not experience developmental and relational trauma in a complex way. Like you have to get very lucky. And this trauma compounds, because it leaves you vulnerable to exploitation and abuse down the road. Finally, the frequent misdiagnoses and sometimes forcible application of treatment protocols that do active harm to people on the spectrum, can result in a shit ton of medical trauma. Add all the usual intersectional elements to this and...yeah.

There isn't any research on this at the moment, or wasn't last time I checked -- I think I found a single paper on autism and PTSD looking at only acute traumatic incidents. But everyone I've talked to in the field is like, "oh yeah, this is definitely a thing." No one seems to know how to research it yet, especially since developments in both fields are pretty recent.

This is less than ideal, because I think it's likely that treatment for adults with CPTSD and autism should probably account for the autism.
posted by schadenfrau at 7:26 AM on February 10 [12 favorites]


For me masking is not ‘changing my personality’ so much as it is a second-by-second consciousness of every part of my body cross-referenced with rules I have developed by closely observing other people my whole life. Words are also run through that filter. It is a constant fight against my body’s instinctual movements. It is not running away when someone talks for more than a sentence or two and the barrage of words pummels me. It’s not rocking or humming or curling up in a ball in public. It’s looking like a regular shopper and not someone who is completely overwhelmed by the sound of the building’s fans and the sliding doors and the carriage wheels and the voices and that guy clicking a pen and the cash register beeping and the lights pressing on me and the colors exploding in my face and the cereal boxes looming and the feel of air conditioning blowing on my skin in a million tiny points, all experienced in one moment’s time. It’s living two lives – one in my head and one I perform. It is exhausting.

I highly recommend Amethyst Schaber’s video series, Ask An Autistic.
posted by ruetheday at 8:08 AM on February 10 [19 favorites]


I have felt for some time that the model we have of "on the autism spectrum" vs "not on the autism spectrum" is probably not the right model. I think we are all on a spectrum, one section of which has been designated "neurotypical".

^^^^ the terminology is so suggestive but people just somehow didn't get the implication? Do they ever ask themselves whether a given frequency of electromagnetic radiation is "on the spectrum"? smdh
posted by Jpfed at 8:41 AM on February 10 [7 favorites]


As someone with Autism who does work on Autism and language, I wonder what happens if we think about it, instead of diagnosies, a set of behaviours that cluser around this thing, for lack of a better word, that we can call autism?

I don't know if that makes sense--but if we say that four or five things that people do (stimming, infodumping, ritualized list making, etc) are commonly thot to be spectrum shaped speech acts, that they are what some people DO instead of what people are?

That said, this idea scuppers me getting my disability benefit, so maybe its a bad one
posted by PinkMoose at 8:45 AM on February 10 [7 favorites]


also cosign ruetheday on masking.
posted by PinkMoose at 8:47 AM on February 10 [3 favorites]


don't have words today but wanted to say thanks to trans people sharing in this thread !
posted by gaybobbie at 8:58 AM on February 10 [7 favorites]


Well damn. I asked a question over on AskMe a few weeks ago about dealing with what seems to me like undiagnosed ADHD that has shaped so much of my life. I saw a therapist about it for the first time on Friday, and at the end of the session, she asked me how much I knew about Asperger's.

I'm reluctant to engage in too much self-diagnosis in general, because it seems like I've spent my whole damn life wondering what's wrong with me, and that the guesses I come up with just keep missing the mark. I just feel... incompatible with the world around me. I understand the rules, mostly, but I don't seem to have the same tools other people do, so I just keep coming up with workaround after workaround after workaround. At this point, in my mid-thirties, I honestly get pretty confused as to how I actually feel: there are so many things I struggle with but have gotten so acclimated to dealing with that I forget how much work I am doing in the background. Social situations are like that for me; I feel so weird around other people, but I've gotten so good at telling jokes and making conversation and asking questions that people tell me all the time that I have a "natural talent" for socializing. I swear to god I don't! I learned all of these skills because there was never an out for me.

The idea of being able to openly and honestly identify as neurodivergent, and to have that be okay, is a tremendously exciting and terrifying idea. It's like I've been told that I have to carry this heavy, awkward burden my whole life, that it's just something I have to live with, that no one else thinks it's so heavy or awkward, I'm just exaggerating. So I've built up muscles and tricks for carrying it, like learning to sustain eye contact and long conversations and to not talk about things that make people uncomfortable. And in the past year and change, these quiet voices, many of them here on MeFi, where I post rarely and lurk constantly because that's how I wish I could live IRL, have broken through enough to say, "maybe you can put that burden down. Maybe it really is as heavy and awkward as you thought. Maybe you can rest sometimes." Tremendously exciting and terrifying.

I'm rambling at this point, but I would like to thank everyone for their open and honest responses in this thread.

I feel heard.
posted by skookumsaurus rex at 9:09 AM on February 10 [32 favorites]


What’s the value in a diagnosis of autism, where there are a bunch of viable alternate dx?

Well, the biggest one honestly is self-knowledge. Autism is very frequently found in the company of other mental shit like anxiety and depression and ADHD, and that's in part because anxiety and depression in particular tend to arise in the wake of chronic stress and trauma. If you're autistic and you aren't making space for big parts of your experience and life because you believe you're just not trying hard enough instead of being different, that can increase the stress and level of cumulative microtraumas you're trying to fight through. And it can be much more difficult to stop negative patterns of self-blame in the absence of that knowledge, too.

My experience is that 90% of the time when I run into self-diagnosed adults, all they really need out of diagnosis is the permission to access and acknowledge their selves and their own experiences. That self-knowledge allows them to make better decisions and forgive themselves for not being like everyone else. It might let them advocate for themselves to other people or figure out workarounds for things they struggle with, too. With that in mind... why would I ever oppose self-diagnosis for people who find it helpful and illuminating for themselves?

(I had never had problems with eye contact until I hit my late twenties and crashed because of, hey, burnout and chronic stress. Now I flap a lot more and have a much more difficult time with eye contact when I'm not very consciously acting, and I make use of a lot of things like staring at people's noses or the bridge between the eyes that I used to do when I was much, much younger. Shit happens.)
posted by sciatrix at 9:12 AM on February 10 [17 favorites]


And reading through and commenting--oh my fucking god, the gender binarism thing with respect to diagnosis--! I had never thought about clinicians pulling that shit but of course they would. Goddammit, I'm incredibly frustrated about that.

Want to know why, trans and gender-non-conforming autistic siblings? Autistic people are unusually likely to be both trans and gender non-conforming, that's why! So this idea that because cis women have a wildly different autistic experience than cis men do on average, trans folks and folks whose gender isn't quite as clear-cut somehow can't be obviously autistic--that's so fucking absurd and frustrating I could spit!

Goddammit, cis NT clinicians, could you please sit down and listen to us? Please?
posted by sciatrix at 9:17 AM on February 10 [18 favorites]


It was only a few weeks ago that I stumbled down a YouTube rabbit hole of women talking about their autism. I'll post links at the bottom.

I've had some suspicions that I may be autistic for a while. The eye contact thing is huge for me - as one woman put it - eye contact causes my thoughts to "scatter in all directions". It's extremely uncomfortable and just I cannot talk while making eye contact. I also remember my 8th grade teacher making fun of me for this and challenging me to look at his eyes and I just could not do it. I have been trying harder and I think what I do is blink a lot and let my eyes go kind of blurry so it looks like I'm looking at your eyes when I'm really actually somewhere far away trying to listen to your words.

I was also hyperlexic. I read to escape have to be with other people. I used to blink rapidly a lot (I've searched blinking stimming) and made myself stop doing it. It's interesting to me that that was about the time when I had a massive breakdown and was diagnoses bipolar. I don't doubt this diagnosis though - my experiences with hypomania really leave no room for doubt. On the other hand, while I'm very smart and interested in almost EVERYTHING, I don't have a few limited 'special interests'. I don't seem to have any sensory processing issues although maybe it's strange that I don't like to vary my hairstyle much at all and that I can't stand wearing pants (so go with dresses only) and was teased about that too. I know I had a strange way of speaking for years (I've been asked what kind of accent I had - I don't have one), but I've corrected that. Once and a while after a stressful day I cannot stand my husband or daughter trying to get me to talk or answer any question for an hour or so.

The worst is the feeling alien from other people. It's not a feeling I have so much when socializing with men, but with women...I get these 'micro-rejections' - I can just see how I'm turning people off. And that makes me anxious and unhappy. I think I smoke because it allows me to escape from social situations very quickly ' "guys, going for a smoke, be right back." I don't relate to very many people, I can't fit in - but I think for the most part I do seem perfectly normal, like at work especially. I need more friends, but I can't be normal. I think I make friends most easily with immigrants, and that might be because they can't read how weird I am.

So, ugh. I asked one of my oldest, dearest friends going back to high school what he thought (he's a doctor now) and first he said that he's known me 20 year and he doesn't think I'm autistic and then he sort of said - why do you need anything more than your bipolar to explain that you're not neurotypical? I don't know. I just don't know.

Yo Samdy Sam - middle aged woman (married, with a child) talking about austism in women and her own experiences

Invisible i - young woman talking about austism in women and her own experiences

Three ideas. Three contradictions. Or not. - Hannah Gadsby touches upon her autism

Good Mental Health for Autistic Girls and Women -any lecture on girls and autism given by Tony Atwood is excellent


Once you start watching these, youtube will feed you lots of interesting and very good videos of autistic women speaking for themselves.
posted by kitcat at 9:21 AM on February 10 [13 favorites]


On the other hand, while I'm very smart and interested in almost EVERYTHING, I don't have a few limited 'special interests'.

One thing I will point out about special interests is that they can present in ways that are... complicated. So for example, one of mine that I've had literally since learning to crawl is dogs. (Seriously--this is a thing my mother noticed before I could speak, that I kept focusing in on our Lhasa Apso and insisting on being near her.) That interest and slightly obsessive focus on dogs brought me to questions of history (where do different breeds of dogs come from? how do we know?), of genetics (how do Harlequin Great Danes work?), of behavior (how do dogs learn? how do people from all different cultures talk to their dogs?) and more.

Sometimes, special interests manifest quickly and almost overtake a person's life for a few months. Sometimes they're well defined and the sort of thing it is possible to collect all human knowledge on, or at least a lot of it. Sometimes, though, they show up and flare up sometimes but never quite stop. And if the special interest is broad enough--and "dogs" isn't my only one, just the oldest--it can ignite other fascinations and tie into all manner of interesting things if you let it go long enough.
posted by sciatrix at 9:31 AM on February 10 [9 favorites]


I say slightly obsessive, but my entire family started making bored faces and groaning whenever I mentioned dogs by the time I was about eight, and it never quite stopped. As an adult, I've more or less learned not to bring dog shit up unless I'm hanging out with other Dog Nerds. This style of special interest isn't necessarily more socially helpful than the other kind, to be honest.
posted by sciatrix at 9:40 AM on February 10 [5 favorites]


One of the interesting things I've noticed when taking surveys/tests like the Baron-Cohen, is that I have to assess whether I should answer based on my behaviors and preferences as filtered through a lifetime of adaptive behaviors, or try to somehow assess what lies behind the masking efforts.

For example:

In a social group, I can easily keep track of several different people’s conversations.

Yes, I can. But that's part of why I have fairly crippling anxiety in social situations without medication. In my case it's an ADHD thing, which further muddles assessment. My brain insists on trying to follow every word and every exchange, while also still watching, say, the passing waiter who looks annoyed after narrowly missing a customer who abruptly stopped and turned. It's absolutely exhausting and physically painful after awhile. I guess that's why it says "easily", but does that mean with regard to the cost or the mental bandwidth to actually juggle it all, regardless of that cost?

Speaking of (personally) muddled assessment questions:

I am fascinated by dates.

I hate dates. And timelines. And chronologies. I'm absolutely terrible at it. It takes me forever to remember people's birthdays and other significant events. If you ask me when something happened from awhile ago, it's really hard to figure out and often the information simply isn't there or isn't accessible. Even though otherwise I have an excellent memory. Apparently that's fairly common among people with ADHD, so I guess that overrides any potential fascination/obsession. There is another question specific to remembering people's birthdays, but that is kind of narrowly focused, I think.

And then there's all the empathy stuff. If anything, I have a crippling empathy response. I've been worrying off-and-on about roach traps I set outside months ago, hoping they didn't suffer but knowing they probably did. Thinking about how they're just little living things that didn't want anything much different from what I want. Cue the rationalization cyclone. And yet, too often you hear people say that part of ASD is a lack of empathy, or maybe a lack of expressed empathy. I don't really buy that, though. Not as a universal given, at any rate.

At this point, I know I'm neuroatypical and that's okay. I've made some progress on improving my adaptive strategies and what not, which has helped. Also, I've noticed that a lot of the people within my fairly small "inner circle" are also neuroatypical. Not through any conscious selection process, but clearly there is some bias happening there.

Sorry for the long ramble, hopefully something of value shakes out for somebody.
posted by Godspeed.You!Black.Emperor.Penguin at 10:13 AM on February 10 [10 favorites]


If I had a dollar for every time my father has asked why I'm walking on tip-toes... I mean, I survived without a diagnosis, but it grates that that's worth pestering me about forever, but not worth actually thinking about.

I toy with the idea of someday answering his question - but that would lead to intense scrutiny of all the ways I was a strange child and may still be strange today, which does not appeal either.

(I've still got a weird callus on one finger from gripping my pencil fiercely and wrong back in the day.)
posted by mersen at 10:45 AM on February 10 [2 favorites]


I've read and/or heard many times that there is most definitely not a lack of empathy in people with autism. And that empathy may perhaps even be felt more strongly felt by those with autism (though I'm not sure how this could be known). It's rather a failure to perform empathy 'properly' that has led to the ridiculous notion that autistic people lack empathy.
posted by kitcat at 11:01 AM on February 10 [12 favorites]


The experiences related in the OP are um, very (like, very) familiar, yet I’d want to be super careful about excluding anxiety (social, GAD, + a touch of OCD, plus I suppose dyspraxia, which I wasn’t ever diagnosed with but clearly applies [unless having visuo-spatial-kinaesthetic development delayed by getting glasses late in the growing up game explains it...]; read at 3, hyperlexia yes; hyperfocus yes, although that could be OCD as well, trouble filtering things out, not so much, issues prioritizing perhaps, ok, sometimes, maybe.)

This is closely related to what I'm getting at. I have some of those diagnoses myself. I am obsessive, I am anxious, I was a precocious and introverted child. I have never been tempted to self-diagnose as autistic, though, because I don't identify at all with the common self-descriptions of having difficulty understanding how other people think/interact, or being overwhelmed by sensory input, or struggling with novelty, and so on. My brother strikes me as someone with some more classically autistic traits - though I don't know if he identifies with it either - and I think we are very different people, who also have a few things in common. Does that mean we're both somewhere on the spectrum, or do we have different but intersecting sets of issues?

I don't have anything against people who are trying to figure out what's going on in their own heads, of course, but I do sometimes feel like the success of the autistic community in achieving visibility online and in providing resources for self-diagnosis unintentionally dovetails a bit with "media autism" in a way that contributes to everybody who comes off a bit "odd" being assumed to be "on the spectrum."

^^^^ the terminology is so suggestive but people just somehow didn't get the implication? Do they ever ask themselves whether a given frequency of electromagnetic radiation is "on the spectrum"? smdh

The metaphor of a spectrum implies a continuous range, which is good, but also that a person lies between two opposite poles, which is sort of my issue. At minimum I think we ought to extrapolate that to a higher dimensionality!
posted by atoxyl at 11:19 AM on February 10


Atoxyl, I think I would say that there is so much gatekeeping around treatment if you do try to get A Real Diagnosis And Actual Help, that it's kinda okay if some people misdiagnosed themselves based on online resources? It's not like, I dunno, healthy people stockpiling all the stores of Tamiflu or something.

As for the social effects of everyone who is odd being assumed to be on the spectrum, that's a hard topic, because it also shades into a society that has lost the ability to distinguish between, say, sadness and depression, or shyness and social anxiety (although I think the social media push of introvert memes is kind of acting like an antidote to that latter one, freeing up some conversational space around the various ways people can be hesitant to be sociable). Obviously any time a diagnosis is popularized--whether through online awareness, or the plethora of psychiatric medication ads on TV, or exciting articles on psychopathy or whatever--the boundaries of diagnostic categories begin to seem blurry and extra porous. But I'm not sure what the harm is?
posted by mittens at 1:07 PM on February 10 [5 favorites]


Atoxyl, I think I would say that there is so much gatekeeping around treatment if you do try to get A Real Diagnosis And Actual Help, that it's kinda okay if some people misdiagnosed themselves based on online resources?

I'm not really commenting on (and not really worried about) the individual impacts of self-diagnosis at all. I'm commenting on the inadequacy of popular conceptions of neurdivergence. I happen to think that the culture of self-diagnosis (and writing about self-diagnosis) can play into this a little bit - and into "amateur diagnosis" of persons other than oneself, which is more problematic - but I am expressly not blaming that on any given person who is just trying to get their head around their own brain (so to speak).
posted by atoxyl at 2:43 PM on February 10 [1 favorite]


The worst is the feeling alien from other people. It's not a feeling I have so much when socializing with men, but with women...I get these 'micro-rejections' - I can just see how I'm turning people off. And that makes me anxious and unhappy

yo it sucks to be a lesbian with ASD let me tell you
posted by schadenfrau at 3:13 PM on February 10 [10 favorites]


Hi all, just came back from the autism assessment site I work at and I'm sorry for taking up so much space but I've been thinking about this thread ALL DAY.

Is it possible to develop symptoms later in life that weren't there in childhood?

Generally, it's thought that symptoms are present in childhood but may not become apparent until the social demands exceed limited capacities. Symptoms can also be "manageable" and then get worse later in life due to burnout. One thing that's hard is that you may have exhibited symptoms in childhood without being aware of it, e.g. maybe you couldn't follow pointing or gaze shifts, or didn't try and engage caregivers in play, or lined up similar items, or any number of symptoms that we may not remember as adults. It's also hard to tell if you were doing things "wrong" if no one told you. I firmly believe growing up in the Midwest has skewed my sense of social propriety because other than a few blunt souls most people never told me I was doing anything wrong, they just avoided me.

Except I don't scream in people's faces because I got aggressively and forcibly socialised not to the whole time I was growing up.

My lab runs a social skills group for teens. We have an unusually high number of girls this semester (5 compared to our usual 1 or 0). The group leader was just telling me about how one of the boys had a huge screaming outburst and all of the girls were trying to calm him down, telling him it was okay, etc. [stares into the camera]

Her reasoning was that because there tests are based off separate samples of men and women, I'm not really from either group medically.

That's completely horrible and awful and inappropriate. I mean, for one thing, I don't know a single autism test that doesn't provide gender-combined norms, even if you can separate it out by gender if you want. Maybe one exists, but maybe she should have... I dunno, picked literally anything else? Also, we don't know if gender differences are biological (e.g. related to testosterone) or social (e.g. related to how women are expected to behave) so the length you were on hormones should have no bearing on anything. Fuck. I'm so sorry you experienced that.

(Did anyone get told repeatedly, when they were at elementary school, that they were pressing much too hard on their pencil when writing? Flash memory, curious about the fine motor skills...)

I can't take notes by hand because of this. My hand starts hurting after a few minutes because in order to hold it steady enough to write legibly I have to grip it so hard. My supervisor laughed in my face when he saw my handwriting for the first time, and that was me TRYING to be neat.

On the other hand, while I'm very smart and interested in almost EVERYTHING, I don't have a few limited 'special interests'.

One thing to remember is you don't have to have special interests to be autistic. Even going by the DSM-5 criteria, you only need two of the following to count for the repetitive/restrictive behavior criteria:

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

So it's completely possible to be autistic without any special interests. Also, please note the "abnormal in intensity or focus" aspect. A lot of people think special interest means you have to be super into the thing, gather every piece of information you possibly can, catalog things, talk about it constantly... that's not the case. Being preoccupied with something that others consider "weird" is enough, because the focus is on whether it's socially alienating.

Like, I was just watching an ADOS-2 (gold standard in autism assessment) training video for a 10 year old. The training documentation marked Pokemon as one of his special interests, when like... this kid didn't even talk about it that much. He probably had three or four sentences to say about it and then didn't bring it up again. He didn't even have them all memorized, he said so himself! And this was back when there were only 251 Pokemon to memorize! But because the administrator thought it was "unusual," it counted. I'm still a little salty about it, tbh.

I am fascinated by dates.

I hate this question because it's literally just because some autistic people have numbers as their special interest. It's measuring for just one of countless possible special interests, which is practically useless.

And yet, too often you hear people say that part of ASD is a lack of empathy, or maybe a lack of expressed empathy.

One of the theories is that autistic people are actually too empathetic, and then either a) they shut down because they're overwhelmed (which looks like no empathy) or b) they don't express it in the same way neurotypical people do (think about it: if you hate being touched, are you going to touch someone else to comfort them?).

yo it sucks to be a lesbian with ASD let me tell you

This is why I just found myself another autistic lesbian, it's 2x the meltdowns but half the social bullshit.
posted by brook horse at 6:26 PM on February 10 [17 favorites]


Oh ALSO y'all I'm having an existential crisis, because during the above mentioned training video, I learned that "formal" speech counts as "stereotyped/idiosyncratic speech" and a 10 year old saying "structure," "resistance," and "for instance" counts as evidence for why he's autistic. So that, uh, makes me rethink my childhood a bit.
posted by brook horse at 6:29 PM on February 10 [16 favorites]


Oh, please do take up space, brook horse, I love listening to you. And then I don't have to feel paranoid about taking up space myself.

This is why I just found myself another autistic lesbian, it's 2x the meltdowns but half the social bullshit.

Oh my god, you do not know how hard I just found myself laughing. Maybe 2.5x the meltdowns, honestly, it's hard when autistic inflexibilities brush up against each other and create their own special frictions. But still: it is so, so worth it to be and feel seen. Especially when I'm having a hard time being verbal and articulating because I'm overwhelmed.

Lots of queer autistics out there, you know--queerness is also overrepresented among autistics. Hang out in spaces for queer dog nerds, horse nerds, media fandom, knitting nerd groups... Generally speaking, there are certain female-skewed hobbies that are hip-deep in autistic women, except no one notices.

(Lady Sybil Ramkin from the Discworld is a vivid picture of a certain kind of autistic middle aged woman, for the record.)
posted by sciatrix at 7:35 PM on February 10 [20 favorites]


(Lady Sybil Ramkin from the Discworld is a vivid picture of a certain kind of autistic middle aged woman, for the record.)

What a cool idea. I would never have thought of it because she uses her social contacts so much, but even they gossip about her behind her back.
posted by Countess Elena at 7:44 PM on February 10 [4 favorites]


Maybe 2.5x the meltdowns, honestly, it's hard when autistic inflexibilities brush up against each other and create their own special frictions.

Omg, yes, definitely the extra .5! Like when I pace and my partner gets so anxious because THEY only pace when something is wrong, so obviously I must be upset, and I'm like, "Literally I only pace when I feel good! I'm fine! Nothing is wrong!" (I recently discovered working out on the elliptical scratches the same itch, and doesn't trigger my partner's anxieties. Nice!) Or their routine being "shower first, then food" and mine being "food first, but we have to eat together, AND I get up earlier than you!" And let's not mention constantly trying to decide who gets to wear the one pair of Good Texture pants we owned until their mother, god bless her, bought us THREE more pairs of Good Texture pants.
posted by brook horse at 7:54 PM on February 10 [11 favorites]


Obviously any time a diagnosis is popularized--whether through online awareness, or the plethora of psychiatric medication ads on TV, or exciting articles on psychopathy or whatever--the boundaries of diagnostic categories begin to seem blurry and extra porous. But I'm not sure what the harm is?

In the UK, there definitely was harm. The merger of diagnostic criteria caused many autistic people to be classified as high functioning for reasons that are more financial than clinical, with consequent suffering.

Of course, I'm in the US where we all get thrown to the wolves regardless. But it still feels wrong. My life turned around from being almost homeless to doing quite well when I got good at masking. I'm lucky enough that it doesn't leave me exhausted the way it does other people. But when other things are landing on my head, the mask slips. My monotone comes back at the worst possible times and I have to stop myself from speaking as I notice the reactions of people around me. It just feels wrong to describe myself in these terms when every single day there's someone going through something so much worse and posting a cry du coeur on Wrong Planet or certain subreddits.
posted by ocschwar at 9:04 PM on February 10 [2 favorites]


In the UK, there definitely was harm. The merger of diagnostic criteria caused many autistic people to be classified as high functioning for reasons that are more financial than clinical, with consequent suffering.

This is not something I've heard in the UK autistic community. Are you sure you've not been taken in by Tom Clements's Autistic Dark Web propaganda?
posted by ambrosen at 11:57 PM on February 10


It just feels wrong to describe myself in these terms when every single day there's someone going through something so much worse and posting a cry du coeur on Wrong Planet or certain subreddits.

Does it help people who are facing worse struggles to distance yourself from them, though, or does it help more to say "I'm like you, and I see what you are fighting through, and I'm sorry"? I have to wonder if it benefits us to seek hard lines and disconnects, particularly when dividing autistics into high and low functioning has been famously described as trying to cleave meatloaf at the joints.

Look, you say you're lucky, masking doesn't exhaust you like it does other people. In the same breath you say "When other things are landing on my head, the mask slips." I see these as statements about overall energetic resources, not about the drain that masking takes. That doesn't mean that masking doesn't sometimes open doors that aren't available if we fail to perform that effort, of course. The world is not a fair place. But I think we do better to stand in solidarity with one another to point out that masking does take energy, and it's not fair to expect us to do it all the time no matter what our resources are, rather than to say that being autistic is an experience specific to people who can't or won't mask anymore.
posted by sciatrix at 4:18 AM on February 11 [7 favorites]


Autistic Lesbians: 2x the meltdowns ½ the social bullshit.. Can't favorite enough. Saving that for the rare-but-epic-simultaneous-meltdown aftermath.

Don't have many words: morning, toddler, 101 stuff.

Here's mine: Got tested. High and low scores literally 3stdev apart. IQ, patterns, Xs, card games, space bar, pencils,memorize, talk. Bubbles, so many bubbles.
Dx: not autistic. not ADHD. Nurture not Nature.
Claimed nature. worked on nurture. Treated problems I saw, not what others told me what was wrong.

Now: Don't feel autistic anymore. Ah-ha! Internalization there. Why must autism be equated with struggle any more than life itself already is? Feelings≠ identity ≠ dx. Perhaps I do myself, community disservice by walking back/not asserting myself as an autist except during times of struggle.

I want to say more, but it's Toddler Time. Her sheer joy when I give her attention, smiles and eye-contact, makes stepping outside of my familar ruts and pathways sooo worth it, and it's this living outside of myself that has me no longer feeling/embracing my more autistic qualities. So who knows, maybe it's nurture after all. I just wish I could unpack that and be there for her at the same time.
posted by bindr at 6:49 AM on February 11 [2 favorites]


This is not something I've heard in the UK autistic community. Are you sure you've not been taken in by Tom Clements's Autistic Dark Web propaganda?

First I've heard of it. I have a friend who's a neuroscientist and a Brit, and he's seen some bad disability decisions and NHS resource decisions. Anecdata, yes.

Does it help people who are facing worse struggles to distance yourself from them, though, or does it help more to say "I'm like you, and I see what you are fighting through, and I'm sorry"?

That's a question that can only be answered empirically. What looks like solidarity to some looks like trivialization to others. And for me, silence is an option.
posted by ocschwar at 7:09 AM on February 11


I love this discussion, I was just talking to my therapist yesterday at my monthly meds check (I have ADHD, diagnosed at 41), about my issues with social anxiety and avoidance. I laid out all that I've wondered about for years -- is it something that should be treated with SSRIs? I've heard that helps some people with rejection sensitive dysphoria symptoms, or am I on the spectrum, as I had wondered for years before my ADHD diagnosis? I feel like my tendancy to clam up around people is due to repeated social mistakes in the past and the resulting fear of saying anything lest I say something I shouldn't .. and is that due to not knowing what the right thing to say is in different situations? or ADHD-related distractedness and impulsiveness making me miss social cues and then blurt out random stuff that pops into my head? Is it due to nature -- so potentially ASD-related -- or nuture -- from the ADHD preventing me from learning to socialize properly because I couldn't stay focused on conversations so I missed a large amount of what was going on around me as a child. Was pressure from the adults around me to be a proper little girl and be quieter a factor? I was a rambunctious tomboy as a kid and resented being put in a girl box and I shrunk into myself as I learned to repress all of that growing up.

But that's something to think about, that ADHD has the potential to mess up your ability to socialize, and most of us have sensory hyper-sensitivies, we hyperfocus on topics we're interested in, we fidget like mad and many of us carry fidget toys (I knit), etc. etc. Differentiating between the two can sometimes be challenging.

And as for self-diagnosis -- I've heard from professionals in the ADHD field that the vast majority of people diagnosed as adults had self-diagnosed before going to a clinic for an assessment, so psychiatrists don't find self-diagnosis to be unusual. Things like ASD and ADHD can be subtle, and people can find compensations that make them appear neurotypical, and no one else sees the tremendous effort they're expending so things go undiagnosed. Especially when even you don't realize you're compensating and assume that everyone else is working just as hard (that was me).
posted by antinomia at 7:14 AM on February 11 [6 favorites]


[Male, self-diagnosed HFA]
I was in my 50's when I read JPod and I first saw the term 'high-functioning autism', so I went to Wikipedia, and one of the first things it said (then) was that it had a high correlation with Myers-Briggs type INTP, which was my (also, self-diagnosed) type. A lot of things in the Wiki article seemed to completely describe me. (Although looking at the Wiki entry today it seems to describe me less than the first time I saw it)

There are millions of people further along on the spectrum tha me so I feel like I don't want to hold up this condition and say 'Pity me!', but it was a great revelation to me to see dozens of my behavioral weirdnesses all get explained by this one idea. It was actually comforting. I can 'pass' and I had found (and retired from) a wonderful career that HFA did not prevent me from having. In school, it was just assumed I was lazy. I also had a hearing test (normal) because I didn't seem to pay attention. I still have a hard time looking people in the eye. It took years for me to be OK with hugging. I had some workarounds, but sometimes I just behaved in a non-normal way. Now I can see these behaviors in my father, my son, and my siblings.

I don't see my condition as a disease or something I need to change, and I'm not looking for therapy or medication (although pot and/or alcohol seem to make me less introverted). Just being aware of it helps a great deal.
It's interesting to read about it now, a dozen years later. Interesting idea about being neurodivergent instead of being on the spectrum. I think I'll go take an online test.
posted by MtDewd at 4:34 PM on February 11 [3 favorites]


Especially when even you don't realize you're compensating and assume that everyone else is working just as hard (that was me).

It's pretty amazing to wind up having a midlife crisis that involves the problem of qualia.
posted by ocschwar at 8:39 AM on February 13 [4 favorites]


It's pretty amazing to wind up having a midlife crisis that involves the problem of qualia.

Therapist: You need to say to your brain –

Me: Whoa, are we distinguishing between our minds and the physical substrate from which they emerge, because I think we have an ontological problem right there.
posted by Joe in Australia at 12:44 PM on February 13 [4 favorites]


The thing is, ASD really does inflict that sort of thing on you. Age 44 and I finally discover that normal people don't have to consciously choose their tone of voice before they speak. It just about blew my mind. I have to method act my daily life, like the world's my stage, and the rest of you get to live in the green room. I had no idea that everyone else out there can just use their unaffected voices unconsciously. Yeah, I'm jealous.
posted by ocschwar at 8:17 PM on February 13 [13 favorites]


My own intensely frustrating mental health experience was asking several professionals if the racing heart and sensation of fear were really a panic attack even if I was able to control my body and didn't actually, you know, panic. I have never felt more like an alien and a punchline.

The thing is, being autistic and passing means learning to sublimate and hide your body's reactions and often, your emotional reactions to an overwhelming world under a layer of conscious iron will. You're already probably a little disconnected from your body--that's just a common thing and probably intrinsic. And no one from earliest infancy will ever indulge your sensory distress unless you can make it seem normal to someone who is allistic. So you learn to ignore your truest self and you ignore distress and you learn to try really, really hard to never let the mask slip, never forget your lines. You grimly ignore problems because you have long since learned your difficulties don't matter.

And then you crash and people say you should seek help. But by that point, help is ill equipped to deal with you. Cognitive behavioral therapy? Your whole world is cognitive, and it's not helping anymore. CBT becomes an hour of agreeing with a therapist about what you should be doing and feeling and thinking and blaming yourself for not being able to achieve it. It's a familiar feeling, so familiar it's almost comfortable. So familiar it's no more remarkable than the air.

It's so tiring.
posted by sciatrix at 5:36 AM on February 14 [18 favorites]


> Age 44 and I finally discover that normal people don't have to consciously choose their tone of voice before they speak. It just about blew my mind.

*blink*

okay. i’m going to have to go think about some stuff now.
posted by Reclusive Novelist Thomas Pynchon at 6:44 AM on February 14 [5 favorites]


okay. i’m going to have to go think about some stuff now.

Username checks out.
posted by ocschwar at 7:47 AM on February 14 [3 favorites]


I have to method act my daily life, like the world's my stage, and the rest of you get to live in the green room.

I once explained to someone that being autistic feels like all of life is QWOP.
posted by Lexica at 9:06 AM on February 14 [4 favorites]


You grimly ignore problems because you have long since learned your difficulties don't matter.

...and that combines quite well with the way women are used to having their concerns downplayed by medical professionals.
posted by Clowder of bats at 8:06 AM on February 16 [4 favorites]


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