Masking is grounded in trauma and is a trauma response
February 5, 2021 3:28 PM Subscribe
A groundbreaking analysis of the social context of autistic masking has been published by Dr. Amy Pearson (University of Sunderland) and Kieran Rose (autistic self-advocate) titled
A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice (open access until February 10, 2021; the virtually identical preprint remains available after that date). Rose's associated essay explains the context and development of the collaboration.
From the essay:
From the essay:
Our views match in particular around where the Academic Masking narrative has gone and is going. We have shared concerns that so much context is missing from it, particularly around stigma and trauma and, even more specifically, with the fact that similar Masking behaviours are described across multiple marginalised groups, based on similar experiences. [...]From the paper:
The blame narrative I mentioned before effectively states that the reason Autistic women and girls have gone unrecognised is not because of a sexist system of recognition and diagnosis, not because of a literally sexist socialised system existing in society, but because the sneaky and crafty differently Autistic women and girls have been hiding from everyone all this time, with their superhero like power of camouflage and invisibility.
Research has shown that dehumanizing attitudes toward autistic people are still highly prevalent despite years of campaigning for awareness and acceptance, and 80% of the stereotypical traits associated with autism are rated negatively by nonautistic people. These findings are consistent with the study of Goffman on “stigma,” suggesting that familiarity with the stigmatized does not reduce negative attitudes toward them. Rose explains: “We move, communicate and think in ways that those who do not move, communicate and think in those ways struggle to empathise with, or understand, so they ‘Other’ us, pathologize us and exclude us for it.” This stigma can manifest in negative social judgments toward autistic people who are more likely to report negative life experiences including bullying and victimization. Thus acknowledging the social context in which autistic ways of being are stigmatized and derided is essential for understanding reasons that masking may occur, and what can be done to reduce the pressure to mask and associated impact.Bonus blog post: Kieran Rose on the use of dehumanising rhetoric, containing an extremely well-footnoted open letter from Dr. Sophie Vivian to King’s College London about ethically-indefensible and scientifically-outdated ideological content in its Applied Neuroscience graduate program. [CW: dehumanising language; mentions of medicalised child abuse and torture]
Great stuff, thanks for posting.
A recent investigation by Schneid and Raz33 found that general impression management and masking were interlinked for autistic people and could not be divorced from one another.
Well, yes. Because they're the same thing.
Is this another one of those NT shibboleths where we're stigmatized for pointing out that the emperor's new clothes are not, in fact, distinguishable from nakedness?
The paper doesn't go in this direction, but as an initial thought, it seems like rejection-sensitive dysphoria could be anotherpiece of the puzzle aspect of the underlying problem alongside alexithymia, masking and stigma .
posted by Not A Thing at 4:45 PM on February 5, 2021 [10 favorites]
A recent investigation by Schneid and Raz33 found that general impression management and masking were interlinked for autistic people and could not be divorced from one another.
Well, yes. Because they're the same thing.
Is this another one of those NT shibboleths where we're stigmatized for pointing out that the emperor's new clothes are not, in fact, distinguishable from nakedness?
The paper doesn't go in this direction, but as an initial thought, it seems like rejection-sensitive dysphoria could be another
posted by Not A Thing at 4:45 PM on February 5, 2021 [10 favorites]
Thank you for the link as I'm always interested in reading about autism and women.
posted by chrono_rabbit at 5:07 PM on February 5, 2021 [2 favorites]
posted by chrono_rabbit at 5:07 PM on February 5, 2021 [2 favorites]
I'm still reading this, but the thought that came to me is: I mask to be understood. If I speak in my natural voice, with my natural expressions, neurotypicals read me as pissed off, disinterested, and uncaring. They are not able to just listen to my words and take them at face value. They cannot help reading into my body language and tone things that are not there. By affecting my inflection and expression, I can indicate what I'm feeling and thinking in a way that they can understand. This is exhausting but it is less exhausting than the hurt feelings that arise if I don't do it. It is also why I do better online, where people have to glean the majority of meaning from your actual words, and not look for secret messages in your face or your voice.
Of course, there are other things I mask explicitly to avoid stigma. Special interests, pacing, stimming. This is definitely a large part of it. But there's also a part of it that is about me accommodating neurotypicals' fundamental difficulty in taking me at my word. Maybe that fits into the perception management bit? I know neurotypicals will misunderstand me if I don't emote at them. So, in order to keep them from thinking negative things about my mood/attitudes which are not true, I adjust my behavior to something they can understand.
posted by brook horse at 6:38 PM on February 5, 2021 [59 favorites]
Of course, there are other things I mask explicitly to avoid stigma. Special interests, pacing, stimming. This is definitely a large part of it. But there's also a part of it that is about me accommodating neurotypicals' fundamental difficulty in taking me at my word. Maybe that fits into the perception management bit? I know neurotypicals will misunderstand me if I don't emote at them. So, in order to keep them from thinking negative things about my mood/attitudes which are not true, I adjust my behavior to something they can understand.
posted by brook horse at 6:38 PM on February 5, 2021 [59 favorites]
Worth adding to the discussion of autism and trauma: Experience of Trauma and PTSD Symptoms in Autistic Adults and Heightened risk of posttraumatic stress disorder in adults with autism spectrum disorder.
posted by bixfrankonis at 7:14 PM on February 5, 2021 [14 favorites]
posted by bixfrankonis at 7:14 PM on February 5, 2021 [14 favorites]
I'm still reading this, but the thought that came to me is: I mask to be understood
I went all the way to my 40s thinking everyone had to do that.
posted by ocschwar at 7:55 PM on February 5, 2021 [46 favorites]
I went all the way to my 40s thinking everyone had to do that.
posted by ocschwar at 7:55 PM on February 5, 2021 [46 favorites]
Thank you for this post. I am really feeling it this evening.
I think I would say that it can be true both that masking is exhausting and traumatically-inflected, and also that it is a useful set of skills that helps a person survive in a diverse world.
I wonder whether having these skills taught by someone who understands what you’re going through, instead of either having them taught by someone who thinks you’re an aberration, or having to teach yourself, makes a difference in the ultimate outcome. Like, quality of life, self efficacy, those sorts of things.
Tangentially, I am also super curious about cognitive aging in autism. Because of the historical focus on autism as a childhood condition, I suspect that very little is known. I imagine that if a dementing disorder is present, the ability to mask must decline, which I could see creating a puzzle for neuropsychologists trying to explain apparent new onset ASD symptoms in an older person.
posted by eirias at 10:11 PM on February 5, 2021 [9 favorites]
I think I would say that it can be true both that masking is exhausting and traumatically-inflected, and also that it is a useful set of skills that helps a person survive in a diverse world.
I wonder whether having these skills taught by someone who understands what you’re going through, instead of either having them taught by someone who thinks you’re an aberration, or having to teach yourself, makes a difference in the ultimate outcome. Like, quality of life, self efficacy, those sorts of things.
Tangentially, I am also super curious about cognitive aging in autism. Because of the historical focus on autism as a childhood condition, I suspect that very little is known. I imagine that if a dementing disorder is present, the ability to mask must decline, which I could see creating a puzzle for neuropsychologists trying to explain apparent new onset ASD symptoms in an older person.
posted by eirias at 10:11 PM on February 5, 2021 [9 favorites]
Is it ableist to highly value emotional and social ability? To consider functionality superior to dysfunction?
What's ableist is to consider one way of existing (being uncomfortable making eye contact) "dysfunctional" and another way of existing (being comfortable making eye contact) "functional" instead of them just being different ways of being human.
I think this is related to what researcher Damian Milton has called the "double empathy problem". Autistic people aren't "worse" at social interaction than non-autistic people, we just do it differently. Yet somehow it's always the autistic person who's expected to adapt their behavior to make the non-autistic people around them more comfortable.
posted by Lexica at 8:26 AM on February 6, 2021 [34 favorites]
What's ableist is to consider one way of existing (being uncomfortable making eye contact) "dysfunctional" and another way of existing (being comfortable making eye contact) "functional" instead of them just being different ways of being human.
I think this is related to what researcher Damian Milton has called the "double empathy problem". Autistic people aren't "worse" at social interaction than non-autistic people, we just do it differently. Yet somehow it's always the autistic person who's expected to adapt their behavior to make the non-autistic people around them more comfortable.
posted by Lexica at 8:26 AM on February 6, 2021 [34 favorites]
I've read the essay and I'm reading the paper, and so far it strikes me as over-wrought. Adapting your carriage and persona to what society expects for a situation is something that everyone has to do, and everyone learns to do starting around just before puberty. It just comes a lot more naturally to normally developing people, and the norms involved come a lot closer to what normally developing people do by instinct.
Part of this process involves jockeying for status so that you can adapt those norms and not just be adapted to them, and that's something that Aspies don't get to do AT ALL, And the rest of it is a really frustrating and sometimes distressing process. But to call it trauma is I think going too far.
In my teen years, I was in a selective admissions public high school in a very rough neighborhood in a very rough city. In the early 90's, when the urban crime wave in the US was only starting to recede. I had to project the right persona to avoid being bullied, while at the same time not projecting a claim to status that I had not secured for myself. I was masking to avoid being put in my place with literal blunt force trauma. I had to act like Eminem in some contexts to keep from getting hurt. I had to ape this one classmate I had in other contexts, a Native American army brat who projected the right air to Never Ever Be Fucked With. And then in my honors classes, I aped the Korean classmates, and well, they were subjected to way more , um, operant conditioning, yeah, let's call it that, at home, than what I had to put up with. And the rest of my peers were going through the same experience, albeit more able to deal with it by instinct than I was.
Nowadays I explain the distinction by pointing out to NTs what it's like to spend an afternoon babysitting someone else's 4 year old. You spend the day carefully projecting the right kind of air to establish where you stand with the kid so that he enjoys the day and doesn't get himself killed. It's method-acting to seem like a parent (and well, it's method acting to be a parent too). Now imagine having to consciously get into character the moment you're in the same room with other people. It isn't trauma, but it is WORK. There's a reason actors need a green room to stay in between performances, and for the same reason, I need to take breaks and find a green room at some intervals.
posted by ocschwar at 8:41 AM on February 6, 2021 [7 favorites]
Part of this process involves jockeying for status so that you can adapt those norms and not just be adapted to them, and that's something that Aspies don't get to do AT ALL, And the rest of it is a really frustrating and sometimes distressing process. But to call it trauma is I think going too far.
In my teen years, I was in a selective admissions public high school in a very rough neighborhood in a very rough city. In the early 90's, when the urban crime wave in the US was only starting to recede. I had to project the right persona to avoid being bullied, while at the same time not projecting a claim to status that I had not secured for myself. I was masking to avoid being put in my place with literal blunt force trauma. I had to act like Eminem in some contexts to keep from getting hurt. I had to ape this one classmate I had in other contexts, a Native American army brat who projected the right air to Never Ever Be Fucked With. And then in my honors classes, I aped the Korean classmates, and well, they were subjected to way more , um, operant conditioning, yeah, let's call it that, at home, than what I had to put up with. And the rest of my peers were going through the same experience, albeit more able to deal with it by instinct than I was.
Nowadays I explain the distinction by pointing out to NTs what it's like to spend an afternoon babysitting someone else's 4 year old. You spend the day carefully projecting the right kind of air to establish where you stand with the kid so that he enjoys the day and doesn't get himself killed. It's method-acting to seem like a parent (and well, it's method acting to be a parent too). Now imagine having to consciously get into character the moment you're in the same room with other people. It isn't trauma, but it is WORK. There's a reason actors need a green room to stay in between performances, and for the same reason, I need to take breaks and find a green room at some intervals.
posted by ocschwar at 8:41 AM on February 6, 2021 [7 favorites]
Is anyone else here an elder autistic? I find that, in my fifties, masking is becoming harder. I'm regressing when it comes to being able to do eye contact. Sometimes looking someone in the eyes feels like staring into the sun. It just hurts my brain.
posted by LindsayIrene at 9:23 AM on February 6, 2021 [18 favorites]
posted by LindsayIrene at 9:23 AM on February 6, 2021 [18 favorites]
Oh God, I'm going to have to come back and read this in full later. I spend a lot of time thinking about autism and trauma, particularly with AFAB folks, particularly with those of us who went undiagnosed for a long time. The amount of misdiagnoses resulting in medical torture resulting in yet more PTSD (I have met an upsetting amount of AFAB autistic people who were diagnosed with BPD or bipolar or an eating disorder and then forcibly committed, where terrible things happened), the amount of trauma you incur from just growing up autistic in an ableist, neurotypical world... especially if your family or caregivers either don't understand their own autism or are neurotypical themselves.
I think about someone like Mel Baggs and how they were institutionalized and dismissed as nonverbal or nonfunctioning, and yet their essays reveal an internal world that is rich and vast and, you know, a fucking person.
I just...there is so much abuse and torture and trauma. To the point where I think getting ableist / neurotypical people to understand this will be very, very difficult, because it will mean understanding all they have inflicted. Few people are capable of facing how they've harmed others; it becomes even harder when you've essentially tortured people with less power than you, or tortured people in your family. Your own children, even.
And the ableism is still thick in the air, everywhere.
posted by schadenfrau at 9:56 AM on February 6, 2021 [21 favorites]
I think about someone like Mel Baggs and how they were institutionalized and dismissed as nonverbal or nonfunctioning, and yet their essays reveal an internal world that is rich and vast and, you know, a fucking person.
I just...there is so much abuse and torture and trauma. To the point where I think getting ableist / neurotypical people to understand this will be very, very difficult, because it will mean understanding all they have inflicted. Few people are capable of facing how they've harmed others; it becomes even harder when you've essentially tortured people with less power than you, or tortured people in your family. Your own children, even.
And the ableism is still thick in the air, everywhere.
posted by schadenfrau at 9:56 AM on February 6, 2021 [21 favorites]
Also, thanks for this post, heatherlogan. It's gonna fuck me right up.
posted by schadenfrau at 10:04 AM on February 6, 2021 [2 favorites]
posted by schadenfrau at 10:04 AM on February 6, 2021 [2 favorites]
For anyone who, like me, was not sure what "masking" means, the first sentence of the paper defines it as follows:
'Autistic masking (also referred to in the literature as camouflaging, compensation, and most recently "adaptive morphing") is the conscious or unconscious suppression of natural responses and adoption of alternatives across a range of domains including social interaction, sensory experience, cognition, movement, and behavior.'
posted by Nec_variat_lux_fracta_colorem at 10:41 AM on February 6, 2021 [2 favorites]
'Autistic masking (also referred to in the literature as camouflaging, compensation, and most recently "adaptive morphing") is the conscious or unconscious suppression of natural responses and adoption of alternatives across a range of domains including social interaction, sensory experience, cognition, movement, and behavior.'
posted by Nec_variat_lux_fracta_colorem at 10:41 AM on February 6, 2021 [2 favorites]
Is anyone else here an elder autistic? I find that, in my fifties, masking is becoming harder. I'm regressing…
I’m 51 now, wasn’t diagnosed until the day before I turned 47. I’ve definitely become “more autistic” (for lack of a more artful phrase), though I’ve mostly ascribed it to diagnosis having been like opening the floodgates of a dam I didn’t even know existed, at least consciously. Like diagnosis gave me permission to behave what was normal for me, not normal for everyone else around me.
I do also wonder, though (as has been mentioned elsewhere upthread) about how autistic brains age. Part of my getting “worse” has lately been an increase in cognitive flubs like saying or thinking “laundry” when I meant “dishes”, or motor flubs like just missing the handle of a pot; these could just be normal symptoms of an autistic brain under more stressful circumstances, or for all I know an aspect of autistic aging.
posted by bixfrankonis at 11:30 AM on February 6, 2021 [4 favorites]
I’m 51 now, wasn’t diagnosed until the day before I turned 47. I’ve definitely become “more autistic” (for lack of a more artful phrase), though I’ve mostly ascribed it to diagnosis having been like opening the floodgates of a dam I didn’t even know existed, at least consciously. Like diagnosis gave me permission to behave what was normal for me, not normal for everyone else around me.
I do also wonder, though (as has been mentioned elsewhere upthread) about how autistic brains age. Part of my getting “worse” has lately been an increase in cognitive flubs like saying or thinking “laundry” when I meant “dishes”, or motor flubs like just missing the handle of a pot; these could just be normal symptoms of an autistic brain under more stressful circumstances, or for all I know an aspect of autistic aging.
posted by bixfrankonis at 11:30 AM on February 6, 2021 [4 favorites]
Is anyone else here an elder autistic? I find that, in my fifties, masking is becoming harder. I'm regressing when it comes to being able to do eye contact.
I am not elder, at 30, but I am also regressing at eye contact as a consequence of cumulative stress. It's fun when you suddenly find you can't hold the mask anymore, isn't it? Also finding myself flub words more frequently than I used to.
Also, thanks for this post, heatherlogan. It's gonna fuck me right up.
I kind of wish I could translate the bark of laughter I felt when I read that into text. yes.
I was talking on Twitter the other day about how I'm a matryoshka doll of layers of complex trauma, these days, and how much of that trauma has been cumulative and amplified by simply not being in a place where I have been validated, understood, and not blamed for my own trauma. I keep pointing this out, but we know that feeling judged to be responsible rather than supported is a major factor, perhaps the most major factor in developing PTSD as a consequence of traumatic events. And I mean, as brook horse says, often when we are masking we are simply trying to communicate in the certain knowledge that if communication breaks down, almost all observers will simply blame us for incompetence. (I keep wanting to dig up sources--I have them! I am eyeing them! but I haven't necessarily got open access ones at the moment.)
Part of unpeeling that trauma and learning how to experience the world without permanently bracing myself for pain has been a process of trying to acknowledge to myself that yes: it was that bad. Yes, trauma is a word I can use. No, just because other people have had it worse, that does not mean that I am not permitted to take actions to protect myself. No, I am not a bad person for expressing boundaries. No, I do not have to allow the world to hurt me in order to achieve any of my goals. Yes, I can give up on trying to do things and interact with people who predictably frighten and hurt me.
Yes, it matters if I am exhausted. Yes, it matters if I am numb and stumbling or in pain. Probably.
Maybe.
I think that's been a journey I have been wrestling with because one of the major strategies I use to get through stressful situations--especially long term ones--is minimization. Which is a really common thing to do! But it also means that it's hard to accurately communicate what you're struggling with, especially when you are bracing for the rejection and the social consequences of being judged to be whining or oversensitive or whatever every time you communicate about what you are struggling with. This is especially true of complex trauma, the kind that comes from many slow comparatively mild incidents rather than a single discrete, relatively easily isolated event that you can point to, and complex trauma is most of what we're talking about here. That isolation and lack of support in conflicts has long-wearing impacts on people.
When you hurt someone who isn't used to it, they scream bloody murder. When you hurt someone who has gotten used to and expects a certain amount of chronic pain, they might not even blink. Our expectations about the way we can expect to be treated are part of the way that we react to discussions of these topics.
posted by sciatrix at 11:45 AM on February 6, 2021 [40 favorites]
I am not elder, at 30, but I am also regressing at eye contact as a consequence of cumulative stress. It's fun when you suddenly find you can't hold the mask anymore, isn't it? Also finding myself flub words more frequently than I used to.
Also, thanks for this post, heatherlogan. It's gonna fuck me right up.
I kind of wish I could translate the bark of laughter I felt when I read that into text. yes.
I was talking on Twitter the other day about how I'm a matryoshka doll of layers of complex trauma, these days, and how much of that trauma has been cumulative and amplified by simply not being in a place where I have been validated, understood, and not blamed for my own trauma. I keep pointing this out, but we know that feeling judged to be responsible rather than supported is a major factor, perhaps the most major factor in developing PTSD as a consequence of traumatic events. And I mean, as brook horse says, often when we are masking we are simply trying to communicate in the certain knowledge that if communication breaks down, almost all observers will simply blame us for incompetence. (I keep wanting to dig up sources--I have them! I am eyeing them! but I haven't necessarily got open access ones at the moment.)
Part of unpeeling that trauma and learning how to experience the world without permanently bracing myself for pain has been a process of trying to acknowledge to myself that yes: it was that bad. Yes, trauma is a word I can use. No, just because other people have had it worse, that does not mean that I am not permitted to take actions to protect myself. No, I am not a bad person for expressing boundaries. No, I do not have to allow the world to hurt me in order to achieve any of my goals. Yes, I can give up on trying to do things and interact with people who predictably frighten and hurt me.
Yes, it matters if I am exhausted. Yes, it matters if I am numb and stumbling or in pain. Probably.
Maybe.
I think that's been a journey I have been wrestling with because one of the major strategies I use to get through stressful situations--especially long term ones--is minimization. Which is a really common thing to do! But it also means that it's hard to accurately communicate what you're struggling with, especially when you are bracing for the rejection and the social consequences of being judged to be whining or oversensitive or whatever every time you communicate about what you are struggling with. This is especially true of complex trauma, the kind that comes from many slow comparatively mild incidents rather than a single discrete, relatively easily isolated event that you can point to, and complex trauma is most of what we're talking about here. That isolation and lack of support in conflicts has long-wearing impacts on people.
When you hurt someone who isn't used to it, they scream bloody murder. When you hurt someone who has gotten used to and expects a certain amount of chronic pain, they might not even blink. Our expectations about the way we can expect to be treated are part of the way that we react to discussions of these topics.
posted by sciatrix at 11:45 AM on February 6, 2021 [40 favorites]
> I just...there is so much abuse and torture and trauma. To the point where I think getting ableist / neurotypical people to understand this will be very, very difficult, because it will mean understanding all they have inflicted. Few people are capable of facing how they've harmed others; it becomes even harder when you've essentially tortured people with less power than you, or tortured people in your family. Your own children, even.
It's very rare for me to see any discussion about ABA on "general" forums (eg ones not by, for, and about autistic people) where the statistics of PTSD in survivors come up and the entire discussion DOESN'T get derailed by a swarm of BCBAs and child shrinks descending to post about how, ACTUALLY, they had the patients who really needed this therapy, and furthermore how dare you accuse me of doing anything wrong, can't you see that I have a degree and you don't?
posted by threementholsandafuneral at 12:07 PM on February 6, 2021 [15 favorites]
It's very rare for me to see any discussion about ABA on "general" forums (eg ones not by, for, and about autistic people) where the statistics of PTSD in survivors come up and the entire discussion DOESN'T get derailed by a swarm of BCBAs and child shrinks descending to post about how, ACTUALLY, they had the patients who really needed this therapy, and furthermore how dare you accuse me of doing anything wrong, can't you see that I have a degree and you don't?
posted by threementholsandafuneral at 12:07 PM on February 6, 2021 [15 favorites]
I'm not sure it's helpful to tell people who have identified their own learning to pass as traumatic that they're thinking about it wrong. I do think it can be helpful to think of it as part of the continuum of human experience, but like everything else in human experience, variability is more the rule than the exception. And I think that for some people, what they're describing as trauma might reflect a life with little to no opportunity for the kind of "green room" (excellent metaphor) that ocschwar describes. That's not just work, it's more like overwork -- hence the use of the word "burnout," I think.
posted by eirias at 1:32 PM on February 6, 2021 [10 favorites]
posted by eirias at 1:32 PM on February 6, 2021 [10 favorites]
we are simply trying to communicate in the certain knowledge that if communication breaks down, almost all observers will simply blame us for incompetence
This is the crux of it, really, and where the ableism comes in. It's not just that if I don't do this, communication will break down. It's that communication will break down and everyone will insist it is my fault. If we are having a conversation, and the neurotypical person misunderstands because they ascribe to me attitudes and moods that they have incorrectly drawn from my expression and body language, I am blamed.
I mask to be understood, but I do so with the added duress of knowing that if I fail, I am wrong for failing to fit neurotypical expectations. No one says the neurotypical was at fault for making incorrect assumptions about me. So I change my behavior to something that neurotypical people can easily understand. Smile with your cheeks, tilt your head there, pitch your voice here, look at the eyes now, stop swaying, nod, look away now, gesture here. I put in the work to make sure neurotypicals understand what I mean.
The thing is, they almost never extend the same courtesy to me. Neurotypical people do not adjust their behavior to make it easier for me to understand them. And if I fail to understand them because the way they communicated was confusing--whelp, it's my fault again. It's always my fault. It's always my fault. It's always my fault.
When people make jokes with straight faces and I take them to be serious, that's my fault. When people pause at the end of a sentence and I don't realize they have more to say, I get berated for "talking over people." When people use subtle expressions to change the meaning of their words, I'm to blame for not picking up on them. When people are tired of talking about a subject but don't want to say that, I'm "monopolizing the conversation" if I don't realize that. If they give me too much information at once and I miss most of it or get overwhelmed, I'm "not listening."
I love talking to people with ADHD, for two main reasons. The first is that, often having social difficulties of their own, they don't automatically assume that any miscommunication is my fault. They don't mind if I interrupt, because they do that all the time too. If I don't understand them, they're happy to go back and explain, because they're used to people not following their train of thought. In general, people with ADHD give me the benefit of the doubt in a way that neurotypicals don't. They other reason is that their communication style is often exactly what I need from neurotypicals to be able to understand them. Their expressions and gestures are exaggerated and easy to pick up on. Telling a "isn't this fucked up?" story to a group of neurotypicals vs my ADHD friends is such a wildly different experience, even if both groups are having the same reaction internally. Neurotypicals will get this certain kind of subtle expression (which I usually miss because I'm not looking at their face) and maybe shake their heads, say "wow" or something in a tone of what I think is disbelief but often can't place. ADHD people will (for example) lean back, spread their hands, look side to side to an imaginary audience and say, "WHAT THE FUCK" in a tone of obvious incredulity.
ADHD people will also jump in and "interrupt" me (but I consider it to be joining in) when they get what I'm saying. This is something I expect people to do. Neurotypical people do not do this--they wait, silently, until I'm done speaking. Inevitably, I take this to mean "you don't understand what I'm saying" and so I keep talking, and talking, waiting for someone to say, "Oh, yeah!" or "Right, it's like x" or something to let me know they get it. But they don't, and then think poorly of me for going on and on and re-explaining myself over and over. People on ADHD, on the other hand, will make affirmative comments or jump in with ideas of their own as soon as they understand what I'm talking about.
People with ADHD are so much easier for me to have conversations with. The only other people that come close are good autism clinicians (of which I have not met many). These are people that are 1) patient with social "errors," and 2) have learned to clearly communicate in ways autistic people can understand. So, for example, if I interrupt them, they'll say, "sorry, just this last bit" or "one sec, brook horse" and often hold up a hand or do something else to let me know they're still intending to talk, then say "okay, go ahead" when they're done. They often have exaggerated facial expressions (possibly a byproduct of most of them working with kids, idk) and clear shifts in tone. If they want me to look at something, they'll shift their gaze, point, and say, "Look at this." When they're tired of a topic, they easily transition to a new one and directly engage me in a way that lets me know they're really interested in talking about it and not just making a passing comment. And this is all stuff they do naturally--none of them know I'm autistic, they're doing this in private conversations, it's not something they put on just for autistic kids and then turn off for everyone else.
So, like... neurotypicals could learn, the way autistic people learn. And lest you think this is something supremely difficult that takes years of autism training: my clinic just launched parent coaching that's basically all the stuff I just described, changing how you communicate with your kid in order to make social interaction more positive for them. I've seen vast improvements in social connection between parents and kids in as little as three one hour sessions. It's actually not that hard. Certainly not compared to learning the extensive, subtle, complicated rules of neurotypical interaction.
But neurotypicals rarely want to put any effort into changing how they communicate. It's always autistic people. And it's always autistic people's fault if the communication goes wrong. I wouldn't mind if it were one or the other--you can either blame me when it goes wrong WHILE actually trying to communicate in a way I understand, OR not put in that effort but be understanding when I fuck up because you aren't making any sense to me. But neurotypicals want it both ways, because that's easier for them, and autistic people "should" be the one doing all the work, because there's something "wrong" with us.
posted by brook horse at 2:56 PM on February 6, 2021 [118 favorites]
This is the crux of it, really, and where the ableism comes in. It's not just that if I don't do this, communication will break down. It's that communication will break down and everyone will insist it is my fault. If we are having a conversation, and the neurotypical person misunderstands because they ascribe to me attitudes and moods that they have incorrectly drawn from my expression and body language, I am blamed.
I mask to be understood, but I do so with the added duress of knowing that if I fail, I am wrong for failing to fit neurotypical expectations. No one says the neurotypical was at fault for making incorrect assumptions about me. So I change my behavior to something that neurotypical people can easily understand. Smile with your cheeks, tilt your head there, pitch your voice here, look at the eyes now, stop swaying, nod, look away now, gesture here. I put in the work to make sure neurotypicals understand what I mean.
The thing is, they almost never extend the same courtesy to me. Neurotypical people do not adjust their behavior to make it easier for me to understand them. And if I fail to understand them because the way they communicated was confusing--whelp, it's my fault again. It's always my fault. It's always my fault. It's always my fault.
When people make jokes with straight faces and I take them to be serious, that's my fault. When people pause at the end of a sentence and I don't realize they have more to say, I get berated for "talking over people." When people use subtle expressions to change the meaning of their words, I'm to blame for not picking up on them. When people are tired of talking about a subject but don't want to say that, I'm "monopolizing the conversation" if I don't realize that. If they give me too much information at once and I miss most of it or get overwhelmed, I'm "not listening."
I love talking to people with ADHD, for two main reasons. The first is that, often having social difficulties of their own, they don't automatically assume that any miscommunication is my fault. They don't mind if I interrupt, because they do that all the time too. If I don't understand them, they're happy to go back and explain, because they're used to people not following their train of thought. In general, people with ADHD give me the benefit of the doubt in a way that neurotypicals don't. They other reason is that their communication style is often exactly what I need from neurotypicals to be able to understand them. Their expressions and gestures are exaggerated and easy to pick up on. Telling a "isn't this fucked up?" story to a group of neurotypicals vs my ADHD friends is such a wildly different experience, even if both groups are having the same reaction internally. Neurotypicals will get this certain kind of subtle expression (which I usually miss because I'm not looking at their face) and maybe shake their heads, say "wow" or something in a tone of what I think is disbelief but often can't place. ADHD people will (for example) lean back, spread their hands, look side to side to an imaginary audience and say, "WHAT THE FUCK" in a tone of obvious incredulity.
ADHD people will also jump in and "interrupt" me (but I consider it to be joining in) when they get what I'm saying. This is something I expect people to do. Neurotypical people do not do this--they wait, silently, until I'm done speaking. Inevitably, I take this to mean "you don't understand what I'm saying" and so I keep talking, and talking, waiting for someone to say, "Oh, yeah!" or "Right, it's like x" or something to let me know they get it. But they don't, and then think poorly of me for going on and on and re-explaining myself over and over. People on ADHD, on the other hand, will make affirmative comments or jump in with ideas of their own as soon as they understand what I'm talking about.
People with ADHD are so much easier for me to have conversations with. The only other people that come close are good autism clinicians (of which I have not met many). These are people that are 1) patient with social "errors," and 2) have learned to clearly communicate in ways autistic people can understand. So, for example, if I interrupt them, they'll say, "sorry, just this last bit" or "one sec, brook horse" and often hold up a hand or do something else to let me know they're still intending to talk, then say "okay, go ahead" when they're done. They often have exaggerated facial expressions (possibly a byproduct of most of them working with kids, idk) and clear shifts in tone. If they want me to look at something, they'll shift their gaze, point, and say, "Look at this." When they're tired of a topic, they easily transition to a new one and directly engage me in a way that lets me know they're really interested in talking about it and not just making a passing comment. And this is all stuff they do naturally--none of them know I'm autistic, they're doing this in private conversations, it's not something they put on just for autistic kids and then turn off for everyone else.
So, like... neurotypicals could learn, the way autistic people learn. And lest you think this is something supremely difficult that takes years of autism training: my clinic just launched parent coaching that's basically all the stuff I just described, changing how you communicate with your kid in order to make social interaction more positive for them. I've seen vast improvements in social connection between parents and kids in as little as three one hour sessions. It's actually not that hard. Certainly not compared to learning the extensive, subtle, complicated rules of neurotypical interaction.
But neurotypicals rarely want to put any effort into changing how they communicate. It's always autistic people. And it's always autistic people's fault if the communication goes wrong. I wouldn't mind if it were one or the other--you can either blame me when it goes wrong WHILE actually trying to communicate in a way I understand, OR not put in that effort but be understanding when I fuck up because you aren't making any sense to me. But neurotypicals want it both ways, because that's easier for them, and autistic people "should" be the one doing all the work, because there's something "wrong" with us.
posted by brook horse at 2:56 PM on February 6, 2021 [118 favorites]
So, like... neurotypicals could learn, the way autistic people learn.
Thank you for providing an opportunity to recommend this video of Hannah Gadsby on the Swedish-Norwegian talk show Skavlan. At one point, Hannah says "I've studied 'neurotypical'", which... yeah.
This interview is currently one of my favorite things, which I keep coming back to and rewatching. I find myself thinking that I want to do a close read reaction video of it because I have so many thoughts about it.
I also find myself quoting it (either out loud or in my head) a lot, which feels... fitting.
One of the things I find interesting is how many AFAB autistic people seem to have read etiquette books "for fun" during our teenage years. I had Miss Manners' Guide to Excruciatingly Correct Behavior half-memorized back then and was also familiar with Emily Post and Amy Vanderbilt. Plus we had a copy of a book from 1892 called Modern Manners and Social Forms, which I knew from cover to cover. Oddly, I think reading that Victorian etiquette manual was really helpful, because (even if I didn't consciously recognize it at the time) it helped me understand that social customs are only customs, ways of behavior agreed upon by most people. In hindsight, I think that helped me feel better about not being able to fit in with my peers, or at least be able to contextualize it better.
posted by Lexica at 4:02 PM on February 6, 2021 [28 favorites]
Thank you for providing an opportunity to recommend this video of Hannah Gadsby on the Swedish-Norwegian talk show Skavlan. At one point, Hannah says "I've studied 'neurotypical'", which... yeah.
This interview is currently one of my favorite things, which I keep coming back to and rewatching. I find myself thinking that I want to do a close read reaction video of it because I have so many thoughts about it.
I also find myself quoting it (either out loud or in my head) a lot, which feels... fitting.
One of the things I find interesting is how many AFAB autistic people seem to have read etiquette books "for fun" during our teenage years. I had Miss Manners' Guide to Excruciatingly Correct Behavior half-memorized back then and was also familiar with Emily Post and Amy Vanderbilt. Plus we had a copy of a book from 1892 called Modern Manners and Social Forms, which I knew from cover to cover. Oddly, I think reading that Victorian etiquette manual was really helpful, because (even if I didn't consciously recognize it at the time) it helped me understand that social customs are only customs, ways of behavior agreed upon by most people. In hindsight, I think that helped me feel better about not being able to fit in with my peers, or at least be able to contextualize it better.
posted by Lexica at 4:02 PM on February 6, 2021 [28 favorites]
One of the things I find interesting is how many AFAB autistic people seem to have read etiquette books "for fun" during our teenage years.
I now wonder whether my strong interest in advice columns had a similar origin. I would read them trying to predict the answer, and would register surprise and interest if it was different than I expected. Like a murder mystery... Obviously advice columns are super popular and I don’t know if this is an unusual way to enjoy them.
My mother and her mother were both extremely rule bound people in this sort of ... pro forma way. Like my grandmother went to church all her life, but I never had any sense that she was a believer at all. I used to majorly resent being raised in this way because it took me like all of my twenties to understand that other people do not take small rules seriously the way they did. But now I am wondering if this is just the family thing for us, the way my dad’s family all has obnoxiously high cholesterol, even the super fit ones. Like maybe this rule bound mentality was their way of making a chaotic social world feel more under their control. If I just do exactly what it says here, I’ll be accepted... right? Well, no, not right, extremely not right actually, but I’m starting to see it now with more compassion.
posted by eirias at 4:36 PM on February 6, 2021 [12 favorites]
I now wonder whether my strong interest in advice columns had a similar origin. I would read them trying to predict the answer, and would register surprise and interest if it was different than I expected. Like a murder mystery... Obviously advice columns are super popular and I don’t know if this is an unusual way to enjoy them.
My mother and her mother were both extremely rule bound people in this sort of ... pro forma way. Like my grandmother went to church all her life, but I never had any sense that she was a believer at all. I used to majorly resent being raised in this way because it took me like all of my twenties to understand that other people do not take small rules seriously the way they did. But now I am wondering if this is just the family thing for us, the way my dad’s family all has obnoxiously high cholesterol, even the super fit ones. Like maybe this rule bound mentality was their way of making a chaotic social world feel more under their control. If I just do exactly what it says here, I’ll be accepted... right? Well, no, not right, extremely not right actually, but I’m starting to see it now with more compassion.
posted by eirias at 4:36 PM on February 6, 2021 [12 favorites]
One of the things I find interesting is how many AFAB autistic people seem to have read etiquette books "for fun" during our teenage years.
I now wonder whether my strong interest in advice columns had a similar origin. I would read them trying to predict the answer, and would register surprise and interest if it was different than I expected.
This is... um... why I read AskMetafilter. Oops.
posted by brook horse at 4:43 PM on February 6, 2021 [35 favorites]
I now wonder whether my strong interest in advice columns had a similar origin. I would read them trying to predict the answer, and would register surprise and interest if it was different than I expected.
This is... um... why I read AskMetafilter. Oops.
posted by brook horse at 4:43 PM on February 6, 2021 [35 favorites]
Literally LOL. I was obsessed with Miss Manners and Dear Abby as an undiagnosed sprog. And, yes, I did apply the things that I learned. I always felt like a traveler from elsewhere trying to understand the natives.
And, yes, the trouble with speaking. Aphasia, calling things by completely wrong words, occasionally just being unable to string together a sentence. Sometimes a word seems to get stuck in my mouth.
posted by LindsayIrene at 5:33 PM on February 6, 2021 [6 favorites]
And, yes, the trouble with speaking. Aphasia, calling things by completely wrong words, occasionally just being unable to string together a sentence. Sometimes a word seems to get stuck in my mouth.
posted by LindsayIrene at 5:33 PM on February 6, 2021 [6 favorites]
CIs-male here, and I read through Miss Manners in my 20s to start to climb out of the hole I had found myself in. And one thing that struck me was how so many of the norms she and Emily Post detailed in their books were there to enable, well, masking. You go through particular motions, and recite particular nostrums to people in order to show them the respect they are due, and in exchange you're relieved of any obligation to be sincere about it. This is a good thing. These norms allow everyone, NT or ND, to get through life with their autonomy in tact. Everyone needs this sometimes.
And yes, I have to echo a lot here. I mask to be understood, because if I don't consciously match my tone and body language to represent how I feel, I come off its being very, very off. The other choice is to use the aspie monotone, which when done right does get me viewed as having some otherworldly wisdom. Being myself is not really an option.
posted by ocschwar at 9:45 PM on February 6, 2021 [2 favorites]
And yes, I have to echo a lot here. I mask to be understood, because if I don't consciously match my tone and body language to represent how I feel, I come off its being very, very off. The other choice is to use the aspie monotone, which when done right does get me viewed as having some otherworldly wisdom. Being myself is not really an option.
posted by ocschwar at 9:45 PM on February 6, 2021 [2 favorites]
One of the things I find interesting is how many AFAB autistic people seem to have read etiquette books "for fun" during our teenage years.
Well I guess that’s another tick in that column
posted by bq at 10:25 PM on February 6, 2021 [7 favorites]
Well I guess that’s another tick in that column
posted by bq at 10:25 PM on February 6, 2021 [7 favorites]
Is anyone else here an elder autistic? I find that, in my fifties, masking is becoming harder. I'm regressing when it comes to being able to do eye contact. Sometimes looking someone in the eyes feels like staring into the sun. It just hurts my brain.
There's both anecdotal and research evidence (unfortunately, as usual, most of the research is conducted by and written about by non-autistic people) that AFAB autistic people often have difficulty as we approach our 50s/menopause. A couple of articles that center autistic perspective:
posted by Lexica at 1:12 PM on February 7, 2021 [11 favorites]
There's both anecdotal and research evidence (unfortunately, as usual, most of the research is conducted by and written about by non-autistic people) that AFAB autistic people often have difficulty as we approach our 50s/menopause. A couple of articles that center autistic perspective:
Autistic Women & Nonbinary Network: Menopause: Just When You Felt Less Socially AwkwardAnd this video by Amythest Schaber on autistic burnout might also be helpful.
Autism [one of the better research journals, IMO]: ‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause
Judy Endow on the Interplay Between Autistic Burnout and Aging
posted by Lexica at 1:12 PM on February 7, 2021 [11 favorites]
Mod note: A few comments removed -- please be very careful making comparisons between the topic of the thread and something that is not the topic of the thread, especially if your comparison seems to be casting aspersions on not only the topic of the thread but the participants in the thread. Email us if you have questions.
posted by jessamyn (staff) at 1:28 PM on February 7, 2021 [2 favorites]
posted by jessamyn (staff) at 1:28 PM on February 7, 2021 [2 favorites]
Is anyone else here an elder autistic? I find that, in my fifties, masking is becoming harder. I'm regressing when it comes to being able to do eye contact. Sometimes looking someone in the eyes feels like staring into the sun. It just hurts my brain.
55, diagnosed at age 53. I'm mostly retired, thankfully, but I believe that burnout motivated that bigtime.
On a positive note, in terms of mental and emotional health I'm doing better than I have in decades, probably because the greatest need to mask (the fulltime in-office job) has been removed. Glad I made the leap.
But yeah: in general I'm much more tired and frustrated now by problems with focus, physical coordination, many of the typical areas of neurodivergent disability. I don't get much accomplished during the day, but I've always been affected by autistic inertia, and it's more pronounced now.
posted by Sheydem-tants at 7:01 PM on February 8, 2021 [7 favorites]
55, diagnosed at age 53. I'm mostly retired, thankfully, but I believe that burnout motivated that bigtime.
On a positive note, in terms of mental and emotional health I'm doing better than I have in decades, probably because the greatest need to mask (the fulltime in-office job) has been removed. Glad I made the leap.
But yeah: in general I'm much more tired and frustrated now by problems with focus, physical coordination, many of the typical areas of neurodivergent disability. I don't get much accomplished during the day, but I've always been affected by autistic inertia, and it's more pronounced now.
posted by Sheydem-tants at 7:01 PM on February 8, 2021 [7 favorites]
Autistic inertia. Inertia is one of the things that I do. It is a way of life for me, I should start a religion, Waitingfortheothershoetofallism. Not to make this about me, but I get masking, ever so much. I do not make a lot of eye contact, because, I don't want most people to talk to me, or think I have an interest in them. Oh wow. Some have interpreted this as snobbishness, and it definitely isn't, because I am very busily inert, and I don't want to be disturbed at it. I am serious. I have some reading to do. Thank you.
posted by Oyéah at 6:58 PM on February 18, 2021 [5 favorites]
posted by Oyéah at 6:58 PM on February 18, 2021 [5 favorites]
Rose27 points out “Autistic Women and girls don't experience different Autism, they experience different prejudice.”
posted by Oyéah at 8:26 PM on February 18, 2021 [3 favorites]
posted by Oyéah at 8:26 PM on February 18, 2021 [3 favorites]
On menopause and autistic burnout, and the difference in how AFAB people experience autism: I'm not yet menopausal, but I've found that testosterone supplementation has made a WORLD of difference, especially with sensory difficulties. Similarly, estrogenic drugs made things way worse. I think there is definitely a hormonal component to how at least some people experience their autism.
I would encourage anyone having difficulties with menopause and autism (or just anyone who's AFAB honestly) to explore low-dose testosterone supplementation. I would have burned out completely without it. There's approximately zero research on this (of course), so you'll either have to find a doctor who doesn't suck or go to a clinic that practices informed consent (thank God for Planned Parenthood, for many reasons, but also this one).
posted by schadenfrau at 6:35 AM on February 20, 2021 [3 favorites]
I would encourage anyone having difficulties with menopause and autism (or just anyone who's AFAB honestly) to explore low-dose testosterone supplementation. I would have burned out completely without it. There's approximately zero research on this (of course), so you'll either have to find a doctor who doesn't suck or go to a clinic that practices informed consent (thank God for Planned Parenthood, for many reasons, but also this one).
posted by schadenfrau at 6:35 AM on February 20, 2021 [3 favorites]
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Autistic woman here, long career in tech. Can't tell you how many times I've been subtly accused of or obviously suspected of hiding something or being deceptive.
Actually, the ableists were correct: I was trying to mask "odd" body postures or tones of voice, resting bitch / blank face, lack of interest in "normal" women's topics like family. Still couldn't escape being bullied or verbally abused, often by managers.
Thank you for posting this and I'm looking forward to reading it. More research on autistic people BY autistic people, please.
posted by Sheydem-tants at 4:21 PM on February 5, 2021 [48 favorites]