Hannah Gadsby on her autism diagnosis
March 19, 2022 11:51 AM   Subscribe

From The Guardian: I can be cold and not know it. I can be hungry and not know it. I can need to go to the bathroom and not know it. I can be sad and not know it. I can feel distressed and not know it. I can be unsafe and not know it. You know how sometimes you put your hand under running water and for a brief moment you don’t know if it is hot or cold? That is every minute of my life. Being perpetually potentially unsafe is a great recipe for anxiety. And – spoiler alert – anxiety is bad.
posted by Bella Donna (21 comments total) 45 users marked this as a favorite
I mostly skimmed because I have no attention span today, but this part at the end stood out:
Welfare systems are not built to be easy for people who are anxious about using the phone, or people who mix up dates. They are not designed for people who are bad at keeping time, filling out forms, or people who can’t easily access all the relevant bank, residential and employment details from the past five years, if they thought to keep that information at all. Welfare systems don’t accommodate transience because welfare systems are not built to be accessible, they are built to be temples of administrative doom, because, apparently, welfare is a treasure that must be protected. Can somebody please do something about that?
Amen. I'm really glad she's drawing attention to it and I hope awareness is building, because the amount of with-it that you have to be -- not just to access help, but to stay on top of the basic things you have to in order to take care of yourself and avoid falling through the cracks in the first place -- requires so many skills and types of literacy and cognitive abilities and resources that it would be hilarious if it weren't so tragic. I'm grateful that she's using her visibility to bring this up.
posted by trig at 12:20 PM on March 19 [80 favorites]

trig - Yes...and I reflect on this sort of thing a lot when hearing the stories from my mom (in her 80s) and how overwhelming everyday stuff is for her.
posted by stevil at 12:28 PM on March 19 [5 favorites]

(in retrospect I think I should have waited with my comment, because while I think that part of the essay is important, I don't want to take the discussion away from the main part, which is about her experience of autism specifically)
posted by trig at 12:40 PM on March 19 [1 favorite]

Gadsby doesn’t acknowledge this in the piece but this description stands opposed to the earlier declaration that, “It’s not autism that makes it difficult to live with autism. It’s the world we’ve created that is not geared in our favor.” Much of what’s described here definitely is the autism making it difficult.
posted by bixfrankonis at 12:49 PM on March 19 [3 favorites]

Much of what’s described here definitely is the autism making it difficult.

How can that be? Autistic people didn't create this system.
posted by Not A Thing at 1:02 PM on March 19 [26 favorites]

I wish* getting an autism diagnosis was more like "Read 50 of these personal essays, how much of this were you saying "Most of my clothes are blue too" and "Hm kind of like my weird shelf I spend a lot of time arranging""
"But searching for the connections between the big picture and the little picture is a very ASD thing to do. I am never not cross-referencing the trees with the forests, and it can be a very exhausting way to engage – but I wouldn’t change it for the world, because I believe communities need thinkers like me."
This also rang a bell for me because doing this is a big part of my job and I spend a lot of time in meetings having to forcefully pull this information out of people who don't want to think about it like this. But we have to, folks, please follow me down the path.
posted by bleep at 1:08 PM on March 19 [24 favorites]

I was struck by what she wrote at the end as well. I appreciated that she both discussed her experience of autism and also discussed how challenging things are for neurodiverse people in general. I really really really want to read the whole book.
posted by Bella Donna at 1:48 PM on March 19 [4 favorites]

Not A Thing -- it's both. I have ADHD and we have a similar experience where some assume that it is entirely the fault of society and its expectations that cause us to suffer. That if only society would tolerate our differences then we would be fine.

Of course, it would help a huge amount if society's expectations for those of us with autism, ADHD, etc., would change. But it would not entirely alleviate our suffering, because we still have a mental illness that is based in the biology of our brains that causes a large proportion of that suffering. It's stressful and overwhelming for me to have so many thoughts in my head at once all the time. It's demoralizing and debilitating when I can't get something done -- a thing I want to do entirely for me and nobody else cares about -- because my brain keeps pulling the rug out from under me by shifting my attention repeatedly. It's not about societal systems when I'm just trying to have a conversation with my friend and I keep losing track of what we're talking about because the wallpaper has a weird pattern or a strange smell wafted by and my brain can't filter irrelevant stimuli.

The thing is it's a problem if society only provides mental health care and considers the problem solved. Because then we run up against real barriers from society when we actually try to implement solutions suggested to us by mental health professionals -- solutions that would work but are "weird" or against policy for not very well-thought-out reasons, etc. So yeah, we do need society to accept that our brains work differently and be tolerant of our need to work and interact in ways that might seem unusual to others. I think that a lot of people are afraid that all of the responsibility will be placed on the person with a mental health disorder (often it's not a fear, it's what actually just happens) and that makes us shout as loudly as possible that society should change, too. And that's fine, it's just that the "too" part is often lost. We need society to accept our differences and work with us, and we also need access to treatment for the very real medical disorders that we have.
posted by antinomia at 3:03 PM on March 19 [27 favorites]

How can that be? Autistic people didn't create this system.

It simply isn't just the system. Gadsby literally in this piece describes a bunch of stuff that is the autism itself making life more difficult. And then, yes, there's also the system not making accommodations or providing mitigations.

I'm just saying that in the past, Gadsby has talked like autism is disabling only through the social model of disability; this piece doesn't explicitly say otherwise but it implicitly does. I just wish she'd said so explicitly, because it's important that people see both pieces of it.
posted by bixfrankonis at 3:13 PM on March 19 [7 favorites]

I think she pretty explicitly describes that she didn't have any difficulty until she started having to contend with the world outside her family:
I wasn’t quirky, I was just Hannah. Nobody thought I was special when I memorised every single question and answer in Trivial Pursuit. Because I wasn’t special; everyone cheated one way or another. It was only when I stepped out of the bubble of my family that things went to shit. And, gosh, to shit they went.
Anything that the people need to know about that we think hasn't been covered somewhere we are are welcome to express from our own point of view.
posted by bleep at 3:52 PM on March 19 [13 favorites]

How I understand it, a part of the social model is the recognition that which differences we identify as disabling is itself a part of the social construction of disability. Like, there’s no doubt that nearsightedness would meet whatever definition of disability you might care to propose. But most nearsighted people do not consider their nearsightedness to have given them an identity as a disabled person. In large part, this is because society has made adaptive technology pretty widely available in the form of glasses and contact lenses. You could probably make a long list of ways that the nearsightedness itself interferes with a person’s activities, but society has ordered itself in such a way that, for a lot of people, those interferences do not deprive a nearsighted person from doing nearly anything a similarly situated non-nearsighted person can do.

The differences persist, as between a nearsighted person and a non-nearsighted person, or as between an autistic person and a non-autistic person, but in the one case those difference matter a lot less.
posted by gauche at 4:16 PM on March 19 [24 favorites]

If you haven't seen her standup Douglas, it's truly a feast of comedy based around her experience of autism. Some youtube links:
HG on the high functioning label (with a prop use that makes me cackle every time, lmao)
the dog park anecdote (the bit about fixating on the dog wearing shoes is just... same, Hannah, same. I'm pointing back and forth between us and also chef's kissing.)
posted by snerson at 6:58 PM on March 19 [5 favorites]

Douglas on fanfare
posted by snerson at 7:00 PM on March 19

Eh; you can certainly take a view of the social model that is purely reliant on social structures to generate the negative experience of disability. And to be fair to bixfrankonis, the two disability communities most prone to essentializing an extreme social model in opposition to biological, medical, or intrinsic models of disability are.... the Deaf community and the autistic community. Those are absolutely the corners of disability community to go if you want to, say, see someone argue that lumping autism with other disabilities is offensive because it implies that there's a real thing there that makes you struggle. Which I have, in fact, seen people seriously do.

Some of that extreme position is a defense against ableist rhetoric that acts like the fact of your existence is inherently a burden on yourself as well as others, that your quality of life is forever compromised, etc and so forth. That's especially fucked if there has never been a version of you that is not autistic, just a version that masks better. So autistic communities as y'all know Bob are usually reacting to discussions of things that make being autistic harder that are intrinsic, like sensory regulation issues, as being calls to erase us from existence. In part that's because often they are, and you know, there's some scars from that shit--especially given the narratives of "cure," and especially given that autism is inextricable from who we are.

There's an essay that goes around on Tumblr sometimes that compares disability narratives to the X-Men, where Storm with the power of weather control says "I'm not broken or bad, I'm just different, and I don't want to be cured and made normal" and Rogue with the power of, uh, killing people by touching them goes "um, there's things about me that I would kind of like it if they were more standard, like being able to shake hands." While this is usually a parable I see people using that story to explain differences in opinions about the use of cures and medical models for disability, the branch I just linked to points out that there's also plenty of autistic people whose experience of challenges isn't entirely derived from failures to make social space for us.

For example, it would be great if I didn't have weird interoception issues that periodically make eating tricky for me. It would be nice if I could remember to drink reliably, too, so I wasn't semi constantly in some degree of dehydration. It seems pretty cool to be able to just magically rely on useful executive function.

I don't want to be cured. I don't want to not exist, and I don't want to be turned into someone else. But I also don't think that beating a drumbeat of, mmm, I'm perfectly fine and it's the rest of you that are broken and if only we set up society to support me everything would be fixed is always good for us either. Autistic people and perspectives are pretty great, but there are certain things that are generally going to be more frustrating for autistic people of my acquaintance, and it's good to be able to talk about the reality of that sometimes too.

Anyway, I'm going to go read the FPP link now.
posted by sciatrix at 7:17 PM on March 19 [50 favorites]

wait, no, I just realized that I've never actually gotten round to listening to Hannah Gadsby's comedy despite the name being familiar, so I clicked on the two links from snerson first, and I get about two seconds into the Douglas one before she goes "and anyone who goes to a dog park on the regular knows that there is NO GOOD conversation to be had at a dog park--"


I'm laughing almost as hard at myself as at her comedy. this is excellent. I've always held that autistic people are the funniest people in the known universe and this is not disproving any of that.

posted by sciatrix at 8:00 PM on March 19 [9 favorites]

I don't know I guess I just really recognize "Everything is pretty much fine with me as long as people meet me where I am and I only start having problems when someone doesn't do that." If that also counts then I think that also counts as something someone can choose to focus an essay on.
posted by bleep at 8:14 PM on March 19 [6 favorites]

Aw, hell, I'm not trying to criticize the piece itself. No one's got to do everything at once. I'm just saying... I get where the nervous checking to say, "can we make sure we leave room for this bit?" comes from.

It's a good piece. A lot of it rings very true. I'm sort of struggling with grief right now, because I was diagnosed as being autistic when I was a kid (at twelve), and with ADHD (at 7) as well, and those diagnoses were never ever presented to me as anything to be compassionate to myself about. Instead I got a lot of lectures about having these weaknesses identified not meaning that I could use them as excuses, and that it was very important not to ever let anyone know I was autistic if I wanted to get to do anything interesting ever again. I wound up totally divorced from my own desires in just the way Gadsby describes.

The worst part is--look, I have a little sister, twelve years younger than I am. I spent my early twenties, when she was little and going through school, being told she was just like me and having all the same troubles, and she was having some issues with a teacher who didn't like the way she was taking notes, and would I tell her my secrets? My answers were things like "if this is working for her who gives a shit what the teacher wants" and "doodling in her margins doesn't actually mean she isn't listening" and "you know, have you gotten her evaluated for neurodivergence? Because look, you asked me for advice, and I think she's struggling because her environment is unfair." After one too many of these little exhortations to give my sister a pep talk that would somehow teach her how to hide enough of herself to be functional, like I was then, they got mad and stopped asking. I had a couple of meltdowns over it when she was about eight; I couldn't handle being asked to lay out a hard opinion for me to give that was only going to be rejected.

Anyway, she got diagnosed with ADHD a couple of weeks ago at nineteen. She texted me to tell me, and I think she was a little startled to hear the surge of grief I felt: I went through all that, I had an actual meltdown over trying to explain that she needed support and insight, and they still ignored it and tried to pretend nothing was different and she wound up dealing with all that shit anyway. I tried to explain very directly and no one listened.

Sometimes I wonder if it's not best to be diagnosed as an adult, because at least the resolution of the diagnosis (formal or informal) can give you a revelation that jolts you out of your old habits and provides a narrative that you can use to be more compassionate to yourself. I feel a little like I got the worst of both worlds in some respects: you can have the explicit knowledge that you are different from other people, and also you can have the shame and fear about having those differences revealed explicitly rather than implicitly installed!
posted by sciatrix at 9:58 PM on March 19 [22 favorites]

Ha. When I learned about ADHD, it was perfectly clear it applied to myself. But, I was over 30. LOL! I had actual professional psychologists insist there was no such thing as adult ADHD! I've since been diagnosed with both ADHD and ASD.

It's rough dealing with these things. It's vastly worse, when everyone expects the absolute MOST out of you. Even worse once you realize for yourself, you have it in you to do much more, if only there weren't such a shortage of ... Round Tuits? Patience? Executive Function?
posted by Goofyy at 7:54 AM on March 20 [3 favorites]

To be fair, I definitely was criticizing the piece itself (which, also to be fair, is a fair thing for someone to do), primarily because I noticed a discrepancy between previous statements and this one, and it isn’t clear to me if it’s a contradiction or an evolution of Gadsby’s thinking. But it struck me as notable, so I noted it.
posted by bixfrankonis at 8:25 PM on March 20

Wow fantastic article-- thanks for posting it.
posted by travertina at 11:14 AM on March 21 [1 favorite]

For anyone who hasn't seen it, Hannah Gadsby's appearance on the interview show Skavlan is worth watching. I find myself quoting bits from this interview regularly. Most recently (misquoted from memory): "People meet me and like me and then at a certain point I can see the expression going over their faces – and this is a very big thing for me – I can see the expression that says '…oh, you're not fun, are you?' No. No, I'm not."

Excuse me, I think I need to go watch it again.
posted by Lexica at 6:13 PM on March 21 [4 favorites]

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