Kudos to @chavisory for writing this. The reduction of any strong convictions an autistic person may have to "just rigidity" isn't just an oversimplification.
It's dangerous. It makes it far easier for others to dismiss us when we say "This is wrong."
(Also, something inside me died a little when I saw one autistic person refer to their own defense of a fellow student against a mean teacher as "displaying cognitive rigidity".)
-Ralph Savarese, See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor
"Throughout this book, Sonia Boué writes of Neurophototherapy as a dialogic practice, a practice of making connections – between the individual and the world, between old and current selves – and the little board book felt like an invitation to dialogue. It also recalled a past self, a pre-masking preschooler who often acted on the impulse to get very, very close to books she loved..."
I've enjoyed Sonia's work for a long time. And I'm reading this, and I'm enjoying it--especially Joanne Limburg's essay--even though I don't really identify with the masking/unmasking narrative at all.
And I think maybe we just need more ways of talking about all the ways autistic people get lost from ourselves, or get separated from who we were as children, or are transfigured by circumstance or necessity, that aren't necessarily masking.
portraits of utility poles
My autistic child got so excited upon seeing someone else portraying their special interest. What great art.
Behold: every utility pole from our house to their school.
!!!!!!!
This is so beautiful! Your child is an amazing artist. Thank you so much for sharing. I'm very moved right now.
There is something that happens--and I tend to see it mostly among autistic influencers on Instagram--where people with a relatively recent autism diagnosis will be, in my opinion, vastly over-extrapolating from personal experience into speculation about "neurodivergent" experiences--in relationships, the workplace, with music, writing, etc. etc.--that don't really have much to do with autism or neurodivergence specifically.
Charitably, I think these are likely people who've felt alone and inexplicable for a really long time, and so when they get an autism/adhd diagnosis, it can feel like a way of explaining...everything.
But some of the things they're "explaining" with it are actually...incredibly common human experiences. Notwithstanding that they may be mediated differently for ND people. Having intense emotional experiences of music. Feeling hampered at work. Feeling misunderstood in relationships.
And I get the temptation to make these things out to be unique experiences of neurodivergent people. Like, without accusing people of just trying to make themselves out to be unique or special...it is very hard to feel very alone in certain experiences, and so I get why getting an autism (or other) diagnosis might make it seem like, oh, obviously this is why. We uniquely must be having these experiences that I've always struggled to articulate or explain.
And sometimes that's true, and sometimes, what someone has figured out how to articulate for the first time is actually an incredibly common human experience.
And from the bottom of my heart...it is worthwhile and often just as powerful to make common cause with neurotypicals over it.
Like I know we find it invalidating or minimizing when we work really hard at describing some experience of being autistic and someone will go "Everyone feels that. Everyone does that." It's easy to take that as proof that someone just doesn't understand the magnitude of what we're trying to describe.
But sometimes, while it might not be true that "everyone" feels or experiences something the way we do...sometimes it is true that a lot of people do.
Because the thing is that being autistic or neurodivergent is still an experience of being human in the world.
And so while we're filtering the world really differently, and we're likely to be mediating certain experiences differently, and a certain number of things do get done to us that don't tend to get done to non-disabled people as much or at the same magnitude...it's not like things that happen to other people just never happen to us.
We live in the world. They do.
...I have the weirdest hunch about why I think I may be nearing actual menopause and not just in the throes of perimenopause...
The wild swings in my motor abilities that used to accompany the few days before my period are almost entirely gone.
Like the last few months, even though I haven't been having periods, I've still been experiencing some form of hormonal swings, with mood changes, bloating, etc., though they seem to be getting less dramatic.
But that thing is just kind of gone...
not to be disabled on main but have you ever fucking noticed how every god damn thing requires both time and energy
Some cowgirl on Threads: "But why shouldn't we try to prevent severe autism? What am I missing? Isn't it insane to be against curing human suffering?"
[Another Threads denizen tries briefly to explain]
"Get out of your feelings about it."
[I try sharing Mel's "Up in the Clouds and Down in the Valley"]
"I'm not wasting my time reading that."
She's literally doing the "Why are women lying about this?" thing.
Some cowgirl on Threads: "But why shouldn't we try to prevent severe autism? What am I missing? Isn't it insane to be against curing human suffering?"
[Another Threads denizen tries briefly to explain]
"Get out of your feelings about it."
[I try sharing Mel's "Up in the Clouds and Down in the Valley"]
"I'm not wasting my time reading that."
So here's something I'm a little embarrassed I never really thought about till now.
Now, we know that IQ tests are problematic, to say the least, on a number of levels.
We know that the ones more predicated on verbal skills tend to underestimate the intelligence of nonverbal and non-speaking autistic students, compared to tests of nonverbal/visual intelligence.
(And just a casual reminder that I don't think "intelligence" is all one thing. I don't think it's a determinant of human worth. I think "intelligence" probably comprises a lot of different perceptual strengths...and some of those are going to lead to strong performances on conventional IQ tests, while others aren't so much. I think there are a lot of ways in which IQ tests fail people, not that those forms of intelligence aren't real.)
But also...my memory of the IQ tests I took as a kid, most notably the one when I was eight that got me into the school's G&T program...is that they can involve a lot of just being watched while you perform little tasks. Watched while you put together red and white tiles into the shapes specified on the test, etc. etc.
And for some autistic kids, this alone is going to represent such an unbearable interference that they're going to under-perform on the test. Not because they're not capable of the task but because the element of being scrutinized will trigger their exposure anxiety or cause freezing or overload their processing bandwidth.
I wonder if you control for that, if you figure out a secure way to let kids complete sections of the test without an examiner sitting there watching them (in my case, in a school counselor's room that was like 8 x 8 feet at best), another subset of autistic kids is suddenly going to do much better than they've typically been given credit for because they're not fighting off literal motor freezing to do the test.
There's an autistic author on Instagram, who's making a series of memes called Autistic Bear Says, of a little cartoon bear dispensing autism info. And I don't much care for them in general, but there's one that goes "If you need me, send me an e-mail--don't fucking ring me! I won't pick up, and not just because I don't have thumbs!" over an annoyed-looking cartoon bear, and like.
I obviously can't tell other people how to advocate or what they should or shouldn't identify with.
But I don't want autistic people to be seen like this, and I don't want to be seen like this.
I know that phone use can be difficult to impossible for us; believe me, I get it.
And I want people to call me if they need me. I might not always be able to pick up, but I will if I can, and if not, I'll message you back when I can. But I don't want anyone thinking I'll be annoyed or angry if they call me when they need me because I'm autistic.
Over the past couple of years, I've started wondering if a factor involved in why I feel so perpetually left out and without a real community--even though I have individual friends--and yet somehow also so socially drained, is that ironically, the people who know me a little bit better and realize that my social energy is lower, are therefore less likely to call me or ask me to come out or to come over and help with some irritating errand because they worry about imposing on my time or energy, than the people who I'm more likely to find overwhelming and draining, but who actually know me less well.
With the result that I wind up more drained and still lonely.
Because the people who I suspect are being more careful about intruding on my time or communication, are the ones who I wish would be less so.
And stuff like this in the guise of autism information is probably not helping. If the people who are seeing it and internalizing it are the ones who are most sensitive to wanting to do the right thing by not overwhelming their autistic friend.
But I had a high school friend die by suicide a couple of years ago. I had another one die unexpectedly (probably of multiple factors, including just not having enough help at home) this past spring.
I have another one just... not picking up the phone.
I want people to call me if they need me. Yes, even the kinda draining ones. I'll pick up if I can. I won't be mad.
"I think autistic children are often intuitively making decisions about worthwhile use of their energy or bandwidth in ways they could never logically explain, either because they lack the words or because the act of explanation itself would require a level of verbal bandwidth they may not have."
Very good article, and i have a partial disagreement - i think what's happening is there are probably three underlying things happening that all look roughly the same from the outside, and are being given the same name.
I wanted to answer this thoughtfully, because I think these are good and useful thoughts.
2. "Trauma. A big part of what makes a thing traumatic is the violation of autonomy, not the act."
100%, and autistic people--children and adults--have our autonomy routinely and disproportionately violated. It makes sense that reactions to that would show up disproportionately in autistic people, without it necessarily being an inherent "profile" of autism.
3. I have also heard accounts like this, of people who are attributing to PDA experiences of actually wanting to do things, but feeling unable in response to either the demand or the social expectation itself, not the substance of the task.
And I still tend to think that even when the distress response is to the request/expectation and not the task, that there are probably aspects of autism itself that are better explanations as well as less stigmatizing.
Autistic people I've known, for instance, seem to have an overwhelmingly common negative or freezing reaction to scrutiny. I think aspects of what we used to talk about as "exposure anxiety" get at this, but it's one of those things that has just never attracted a lot of research attention, and it seems very important to me.
"The delay in activation of mouth muscles in Cattaneo’s study suggests that individuals with autism are not executing an action chain, but rather processing each movement sequentially. Under some conditions, it may become extremely difficult or impossible for someone with autism to intentionally control each individual step.
Self-reports from individuals with autism mirror this kind of difficulty with chained movements, and the need to execute movements as single components instead..."
Oh hey, who wants to bet on the likelihood of this being related to heart disease as one of the top causes of death in autistic adults.
Like, if it's harder to exercise because it's literally harder to move, or harder to enjoy exercise because it never gets easier the way it seems to for other people... how likely is it that we're doing less of it? (Even aside from the fact of sensory issues making it more unpleasant for us than other people.)
