December 9, 2025
Neurophototherapy, art, unmasking and not masking
I’ve never really identified with the narrative around masking and unmasking in the autistic community. When I was just starting to encounter autistic writing seriously considering the possibility, and then the probability, that I was autistic, the community was more likely to talk about “passing” or “camouflaging,” terms which implied to me more ambiguity, more negotiation with an environment or with a social context, than mechanistically pretending to be non-autistic by relentlessly suppressing autistic traits in favor of constructing a neurotypical persona in the way I tend to hear younger and more recently diagnosed people describe now.
We often tell parents that autism isn’t a shell surrounding a “normal” child. There’s no non-autistic child hiding under an autistic mask.
In my case, there’s no authentic, autistic me hiding under a neurotypical mask. “Masking,” the way it seems to mostly be meant now, is not something I’ve ever had the bandwidth to do.
But I’ve enjoyed artist Sonia Boué’s work for a long time, and finally got around to reading Neurophototherapy: Playfully Unmasking with Photography and Collage this weekend.
One of the ideas Boué presents in the book that I found particularly resonant, though perhaps not entirely in the way she intended, is that of “working with safe things.”
I love collage art, and I struggle with it, in much the same way that many of us do with our sticker collections and actually putting stickers on things, with using up, cutting or gluing all the beautiful images and little scraps of things I find and save. I feel like if something doesn’t turn out the way I hoped it would, I’ve destroyed it.
It had never quite occurred to me to just use the color copier sitting beside me on my desk to make some copies to play with without risk. That not just in the emotional content but the actual materials I gave myself to work with, I could make it safe to experiment more freely.
“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…”
Like Joanne Limburg, who writes the first of two guest essays in the book, I had nurtured early hopes of artistic talent that were eventually subsumed by the necessity of being the smart girl. For reasons both complicated and not, I felt like I needed to throw the majority of my time and energy into high level academics, and it’s not that I was “masking,” but it’s also difficult to exercise the kind of freedom and disinhibition necessary for art when an extreme amount of the cognitive disk space you have available is going to math and chemistry and AP English papers. Especially, probably, when you’re autistic and switching gears/changing activities is specifically something you have trouble with, and also that even when all of your time isn’t being taken up by homework and extracurricular activities, you’re exhausted by school.
I was also struck by Limburg’s statement “I wondered if perhaps neurophototherapy, which is a practice of unmasking to oneself, specifically required conditions of privacy in which to work.” I’ve often wondered whether elements of autistic learning and growth particularly require privacy, whether there are in fact neurodevelopmental reasons why we just don’t thrive under conditions of intense scrutiny.
And it all left me thinking that maybe we just need more ways of talking about all the ways in which 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.
“One of the cruelest tricks our culture plays on autistic people is that it makes us strangers to ourselves,” Julia Bascom wrote in her foreword to the Loud Hands anthology. And I think that there are actually a lot of different ways that happens, and paths by which we can start to find our way back, that aren’t accounted for by the narrative of masking and unmasking.
November 3, 2025
Records I’ve owned more than once: Ten Years Together
My parents being of the generation they are, I grew up with this album in the house, of course. Peter, Paul and Mary were actually one of the first concerts I was ever taken to, when I was eight.
I bought myself a copy in college–our debate society’s hall had a turntable, donated or left behind by another alum, so a couple of us bought a few LP’s to have around from one of the record stores downtown, though I don’t actually remember if I found it at Wuxtry or Schoolkids or a sidewalk merchant’s table. I got us that one, and also the Moody Blues’ On the Threshold of a Dream.
And then of course I had to leave it behind when I moved to NYC. I hope it’s being enjoyed there still. I didn’t own a turntable for a long, long time. Money aside, there was just no space.
One year as I was getting ready to leave a friend’s Thanksgiving gathering, already the last person to leave, I noticed that she had a copy, and we put it on, and wound up talking until 3:00 in the morning.
But finally some domestic musical chairs left me with a little extra room, and I spent part of a workshop stipend on a cheap portable turntable from Barnes & Noble, when they’d decided to start carrying music again.
And told myself that whenever I next ran into a secondhand copy of this, I had to buy it.
Which I did a couple weekends ago when I took a little adventure up to Peekskill, NY, on one of my last days off before I started rehearsal for a new show. In a used book and record store called the Bruised Apple.
Yes, it really was $4.50. And it’s in almost perfect condition.
September 27, 2025
Blogging “A Ring of Endless Light”
So in addition to blogging a Willa Cather novel in the summertime, I also try to get around to one of the books of either the Austin Family Chronicles or the second generation of the Murry-O’Keefes. I’ve been alternating between them, one of Vicky’s books for one of Poly’s, rather than reading straight through each series in succession, which has brought out some really interesting parallels between them.
I didn’t get around to this year’s book earlier in the summer the way I wanted to–The Song of the Lark was long (Cather’s longest book, as it turns out), and some other issues took up a lot of the second half of my summer (roommate upheaval, trying to organize a little independent research project that’s taken a lot of reading unto itself, taking my landlord to court)–but it’s still happening! Posts for A Ring of Endless Light will be appearing at the tag here.
August 30, 2025
Summer’s end
Ran into Emily #2 right as I was going out for an evening stroll, so we walked around the Reservoir and caught this view just as the sun was going down over the West Side. Neither of our iPhone cameras really did it justice.
August 22, 2025
Unconvincing reframings and renamings of PDA
Those of you who follow me on other platforms know that I’ve been pretty openly critical of the label of PDA (for Pathological Demand Avoidance) and the ideas behind it. One common response to criticisms of the PDA community has been to promote relabeling the phenomenon, often as either “Pervasive/Persistent Demand for Autonomy” or as “Rational Demand Avoidance.” But this recent article, arguing for such less overtly-pathologizing terminology, to me serves instead as an excellent example of why I maintain that the name is actually the least-bad thing about the framework of PDA, and why I think simply substituting euphemisms won’t help, and instead serve to further obscure rather than illuminate important things about autism and about why autistic children may adopt the behaviors of “PDA” as coping strategies.
“PDA describes autistic children exhibiting obsessive resistance to everyday demands and requests,” explain authors Robert Naseef and Stephen Shore. But autism already, by definition, involves difficulty with everyday tasks and activities. The problem with the label of PDA isn’t that it’s unnecessarily pathologizing or dehumanizing (although it is); it’s that it’s obscuring the fact that an autistic child obsessively avoiding a task or request probably has some kind of fundamental difficulty with that task.
In the first example given, for instance, “Twelve-year-old Calishea frequently melts down when asked to clear the dishes from the table after dinner, rinse them off and put them in the dishwasher. After a brief period of whining, she slams her silverware on the table, stands up, knocking her chair backwards, and shrieks as she stomps out of the kitchen.”
We’re meant to assume, I suppose, that Calishea has no actual difficulty completing this task, that she’s reacting to the demand and not the task itself. But is that true? To clear the table, rinse the dishes, and put them in the dishwasher is a hugely complicated sequence of motor tasks which also include multiple potentially distressing sensory elements (the clatter of dishes, the sight or tactile feeling of soggy or partially eaten food, the growl of the garbage disposal, the feeling of water on your hands or trickling down your sleeves) to demand of a child with a disability that’s coming to be recognized as inherently having movement and motor planning components (and has been widely recognized for a long time as having sensory ones).
(It’s also a task with which I had immense trouble and frequently resisted doing, albeit not as dramatically, when I was exactly that age.)
So there’s a way in which I think “Rational Demand Avoidance” is getting closer to the issue—that many children are avoiding/refusing tasks rationally to avoid distress. But I also think that to say a child “rationally” refuses tasks that make no sense to them actually refracts into about three separate possible underlying issues, and to conflate them and then let that be the end of the story seriously risks obscuring real distress and important deeper mechanisms of autism.
-There may truly be people who are refusing tasks they’ve logically determined have no purpose or meaning in their lives, and are logically deciding to bear the consequences—like failing out of college—of those decisions.
-I suspect, however, that when we’re talking about children, who particularly may not have language for or the ability to describe why they find a task too difficult or distressing, that this is an excuse. I don’t mean that these kids are lying with the intent to deceive, but that an excuse is often what substitutes when someone can’t tell the truth. And far more than that a child has actually done a fully informed calculation and determined logically that a task like washing the dishes doesn’t make any sense, I suspect most kids who are offering a statement like this are substituting an explanation they can find for one that they either don’t have the language for, or fear won’t be believed.
(Mine was often that I was “too tired.” And I was. I was tired. But I wouldn’t have had a chance in hell of successfully explaining why.)
-In the chapter on autism in Far From the Tree by Andrew Solomon, researcher Michael Wigler says “There is probably an interplay between personality and the deficit. You and I could have similar deficiencies, but we would make different choices. It sounds odd that a two-year-old may be making a choice about what he can and can’t handle, but they probably do. You could have two kids that grow up in the same impoverished environment, and one joins the priesthood and the other becomes a thief, right? I think that can happen internally.”
In a chapter that I otherwise found disappointing in the extreme, this is an observation that I thought was really astute about the complexity of interactions that may determine why autistic children can follow such different developmental trajectories. Mel Baggs described similar dynamics in “About the way autistic people put our skills into different areas,” as far as autistic people engaging in cognitive tradeoffs to access different skill sets in response to different environmental demands, or allocating energy to different skill sets at different times.
I think that in a significant number of cases, even if a child does understand the logic or necessity behind a request, it may require an amount of bandwidth or motor planning that they do not have access to, and so a child is rationally, even if they can’t explain why, making tradeoffs to conserve bandwidth for more vital tasks.
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.
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Likewise–why does an individual exercising “persistent drive for autonomy” need to exercise such intense control over their environment? Aside from that an adult is in no way obligated to change their living environment or routines just because someone else says so and they may be correctly asserting their rights to live as they wish in the face of undue interference (though obviously there’s a lot of nuance here for someone who doesn’t live alone), once again, given what we know about autism, is it possible that someone has set up their living quarters or arranged their daily routines in order to enable them to function the way they need to by circumventing movement, executive functioning, or sensory challenges.
And the thing is, even if someone doesn’t know why they need their environment to be a certain way in order to function at their best, only that they do, even if they don’t know anything about what the research shows regarding autism and movement disorders, even if they can’t explain any of this—they’re still right. Their insistence on maintaining certain environmental conditions or routines isn’t just coming from nowhere; it is grounded in things we already know about autism.
And if it is actually necessary that someone change their habits or living environment, because they are posing an unacceptable health or safety risk to themselves or others, then better understanding those mechanisms stands a better chance of enabling a solution or workaround that accounts for those core challenges.
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I remember years ago now when I was in a discussion with a parent in a comment thread, who complained that her young adult autistic daughter “just wouldn’t do what she was supposed to.” When I asked what she meant by that, she listed chores like doing the dishes and laundry, picking up her room, etc.
Okay, I said, is it possible that she’s experiencing some kind of sensory, transitioning, visual processing or motor planning challenge to tasks like that?
No, she insisted. Her autistic daughter didn’t have any of those.
I don’t think we need another term to say “autistic people just won’t do what they’re told” when what we know about autism at this point already offers myriad plausible explanations for why some seemingly socially capable autistic kids strenuously resist seemingly simple tasks and requests (namely, inertia, difficulty with transitions and starting/stopping/changing activities, sensory challenges, motor planning challenges, and intolerance of unpredictability).
“PDA can be mistaken for defiance or oppositionality because it presents as ignoring or avoiding tasks that are asked of someone.” But why is a child so strenuously avoiding a basic request? Don’t we have any obligation to this child to investigate whether any of the well-documented characteristics of autism known to render it a disabling condition could be at play here, and whether compromises, adaptations, or workarounds become possible if a child is enabled to name and understand those issues?
August 12, 2025
Lullabies
A couple of nights ago I was minding my own business when I received a text message from a number I didn’t recognize reading, simply, “Do you like Italian food?”
I suspected spam or a phishing attempt, though I’ve also had incidents in which someone I did know but whose most recent number wasn’t in my phone texted me while trying to reach someone else, so I said I was very sorry but they didn’t seem to be in my phone, and could they tell me their name if they were someone I knew. Facebook friends, meanwhile, confirmed that not only was it almost certainly a phishing attempt, but an AI-driven one. (I reported and blocked the number.)
So when I was sitting out in the park tonight, reading and watching dusk descend, and got a text message, to a whole group of numbers I mostly didn’t know, with a Spotify link attached, I obviously suspected spam again, but closer investigation revealed the sender to be an actress I worked with once years ago…and the song she sent a group of friends which had accidentally included me was this one.
It reminds me a little bit of this poem, which is one of the ones I have memorized to recite to myself when I can’t get to sleep.
July 18, 2025
Neurodiversity Podcast: Beyond Buzzwords
And finally for the summer updates–I got to do a recent episode of the Neurodiversity Podcast with Emily Kircher-Morris! We talked about the meaning of neurodiversity and biodiversity, “autism is a superpower” rhetoric, LGBTQIA autistic people, some of my misgivings about the PDA label, and more!
July 1, 2025
New at TPGA!
And I’ve got a new post up at the Thinking Person’s Guide to Autism this week! It’s called “Autistic People Are Not New in This World,” and it’s about how the narrative that autistic people all used to be institutionalized shortchanges the truth and complexity of our histories.
You can read it here!
June 28, 2025
Blogging “The Song of the Lark”
It’s summer and I will once again be blogging a Willa Cather novel over on Tumblr! This year’s will be The Song of the Lark.
In all honesty, mostly because there’s a PDF of a paper about this book that I’ve been desperate to read sitting in a folder on my laptop for months.
As in years past, not promising any particularly organized or deep analysis, just thoughts, questions, observations.
Tumblr tag is song of the lark!
Chavisory's Notebook 