Autistic Commonality and the Illusion of “Quirky”: A thread from a TPGA article by @epballou!
Some people insist on describing the autistic spectrum as ranging from the non-speaking and very profoundly disabled, to the “just quirky.”
(Ed.: Emily will explain why this is BS.) 1/
@epballou Or, during discussions about the need for acceptance and accommodation, the same people might tell autistic self-advocates, “That may be fine for autistic people like you who are just quirky, but you're not like my child.” 2/
@epballou Some of those same people even insist that autistic people who are “just quirky” should probably have a different label than 'autism' altogether.
But I actually wouldn’t mind if the word “quirky” were to disappear entirely from autism discussions… 3/
@epballou …and take with it the dismissive and simplistic idea that autism is a condition with only two manifestations—the genuinely disabled, and the "just quirky.”
Autism has specific diagnostic criteria. Though criteria changed/broadened since autism 1st appeared in the DSM in 1980, the more important changes leading to autism's diagnostic explosion hinge on discrediting outdated and invented prejudices about who can/can’t be autistic. 5/
At various times, it has been believed—implicitly or explicitly—that people who could not be autistic included adults, women & girls, people with intellectual disabilities, people without intellectual disabilities… 6/
[people who were excluded from autism diagnosis historically cont’d] …people without intellectual disabilities, people of color, children who ever spoke, children who toe-walked, people with ADHD, and people with virtually any other identifiable anomaly of brain physiology. 7/
That is a LOT of autistic people who were simply excluded from diagnosis by completely arbitrary factors having little to do with the nature of autism itself. 8/
And while it is reasonable for people to debate about exactly what form autism diagnostic criteria should take, “quirky” has simply never been among those criteria.
No one is diagnosed with autism on the basis of being “just quirky.” 9/
“Quirky” is a characterization far more likely to be used to DENY an autism diagnosis to women, girls, female-presenting and gender non-conforming people, as well as those who don’t fit other common stereotypes or more conventionally accepted presentations of autism. 10/
When I’m talking about our need for acceptance & respect, I am not talking about being quirky. While I do have traits that I suppose could fairly be considered “quirky”—like an affection for knee socks—that is not what I’m talking about when I’m talking about being autistic. 11/
When I’m talking about the challenges posed to me by inertia and task-switching & significant motor planning issues, I’m not talking about being quirky.
When I’m talking about whole-body nervous system pain from sensory overload, I am not talking about being quirky. 12/ #autism
When I’m talking about autistic language processing differences that can leave me feeling like I’m speaking English as a second language compared with NT peers… 13/
…and that I can command the physical and mental effort required for speech for a cumulative maximum of two hours per day under most circumstances without becoming physically ill, I am not talking about being quirky. 14/ #autistic
When people use “the voice” on me, treat me like I’m invisible, or grab things out of my hands at work, that doesn’t happen because I’m quirky. 15/
…or that I grew up to feel not even human or maybe not even real, because I had no other explanation for why I wasn’t like everyone else and everything was so hard. 17/
When people don’t believe me when I say I can’t do something they think should be easy, I don’t think that’s because I’m quirky.
No, it’s because I’m autistic.
18/
This doesn’t mean that I’m exactly like every other autistic person, but no person is exactly like every other person in a designated group, autistic or not. 19/
All humans, and all humans of various identity groups, have important commonalities as well as whole constellations of different abilities and challenges of varying intensity. 20/
The DSM defines autistic people as having commonalities in social communication issues, restricted interests, repetitive behaviors, and impairments in adaptive living skills. 21/
Autistic people & some of the better autism research starting to emerge are like to consider those issues as resulting from core processing differences in how the brain governs factors like movement, sensory feedback, executive functioning, & atypical experiences of language. 22/
What autistic people tend to share are those autistic commonalities.
23/
What is decidedly NOT the case is that autistic people with very profound support needs in every aspect of daily life have somehow been arbitrarily assigned to the same diagnostic label as people who are "only" socially awkward. 24/
Autistic people are autistic because we display a common, distinctive pattern of observed challenges across a range of domains. While I think the DSM-5 currently does a poor job of conceptualizing the core features of autism coherently… 25/
(& the DSM's poor job conceptualizing the core features of autism probably contributes to much of this present confusion), many autistic ppl experience, & conceive of, those observed features as resulting from a deeper stratus of physical & cognitive experiences of the world. 26/
And many of those perceptual experiences are described remarkably similarly by ppl all across the spectrum. So while the expression or “severity” of our challenges as autistic people may vary widely, but the underlying reasons for those challenges often prove similar. 27/
That is why an autistic person who lives with minimal support needs, holds down a job, and sounds “articulate” to your ears, may in fact have the very same disability as someone who needs a high degree of support, cannot speak, or whose movement differences are very apparent. 28/
So, although, for instance, while Leo and I are very different in some important ways, the way his mom describes his physical intelligence and tactile engagement with the world is very familiar to me:
Mel and I were different in important ways, but when sie describes autism in terms of the ecologies of cliffs and valleys, that is very familiar to the way in which I actually experience it:
Julia @JustStimming and I are different in important ways, but when she describes what it’s like to see “someone who moves like you,” that is a feeling with which I am intimately acquainted.
I will never forget, shortly after I’d been diagnosed & started connecting with autistic & parent blogging communities, the mother of a young man with very extensive verbal communication difficulties described instances when he would suddenly seem sad or even start crying… 32/
…her son was crying seemingly for no reason in his present circumstances she could discern or that he could describe. She was wondering whether it could be that he was simply in the grip of a memory so powerful that its emotional intensity was completely overwhelming. 33/
And a whole chorus of about half a dozen autistic adult women—all of us able to communicate in writing, some of us with things like jobs and marriages—replied that yes, that crying because of the grip of a powerful memory something most of us had actually experienced. 34/
An autistic person who has an autism diagnosis had a professional believe they should have that diagnosis for good reason. 35/
It’s not that autism misdiagnoses never happen, but—particularly for those who aren’t white and male or don’t conform to other stereotypes—it is not a particularly easy thing to convince a professional that one is autistic, without substantial proof. 36/
Autistic people are, troublingly, more likely to have diagnostic professionals tell us they “don’t see it” if we’re into English literature or art instead of math or computer programming, or if we display emotion or empathy. 37/
It’s okay to look at one autistic person and not necessarily understand how their experiences compare to those of another autistic person you know. BUT. 38/
It’s NOT okay to dismiss that first autistic person's lived experience as having nothing to do with “real” autism simply because you don’t understand what autism is like for them. 39/
In fact, listening to autistic people who have different experiences from the autistic people in your life might present a great opportunity to become more familiar with a wider variety of autistic experiences.
But please know: when I am talking about being autistic, I am not talking about being quirky. If you are, then we are not talking about the same thing.
Dylan Freeman, an autistic boy, has been murdered by his mother. Instead of emphasizing Dylan’s right to live, the media is going on about the caregiver burden of his mother due to pandemic lockdown.
I'm here to say: Fuck that. 1/
I need you—and judges and “that poor mother” reporters like @allisonpearson everywhere—to understand that, however difficult it may be for families to support their disabled loved ones, murder is NEVER excusable. There are always other options. Always.
Dylan should be alive. 2/
@allisonpearson It’s jarring how much reporters' descriptions of victims like Dylan resemble my son: He’s a high-support autistic dude. He’s minimally speaking. And because he needs (and deserves) full-time support, my husband and I are automatically considered good, selfless people. 3/
Autistic people deserve the love & respect that come with acceptance, not merely acknowledgment that autism exists. Awareness is passive. Acceptance is a choice.
Here are ten ways you can honor autistic people of all ages. (Hark, a thread!)
1) Honor communication. Everyone communicates. If your autistic loved one struggles with spoken language, help them find a communication system that works for them, whether scripted speech, typing, a symbol-to-speech device or app, sign language, or a letter board.
2/
Understand that an autistic person’s spoken words may not accurately represent what they’re thinking, or their intentions. My son sings “The cold never bothered me anyway!” to tell me he’s cold. If he asks me to repeat phrases after him, he's asking for reassurance. 3/
I’ve seen folks getting sad about a certain Hamilton creator supporting a certain not-great autism charity whose initials are "AS.” Truly, this bums me out, too—yet I don’t blame people who are trying to do the right thing for not knowing which autism orgs to trust. A thread: 1/
Our media conditions its audiences to fear and pity people with autism and other disabilities. And it’s not just sensationalistic, clickbait media outlets that impugn the rights and basic humanity of autistic people. 2/
Progressive publications & writers can be just as reactionary. But as we tend to trust “thought leaders” as both intellectually rigorous & socially fair, their ableism often goes unchecked and is far more dangerous than that of their unapologetically prejudiced counterparts. 3/
[CN: murder of an autistic child, parent-victim fallacy]
Yet another autistic child has been murdered by a parent, who claims the child is in “a better place.” F*** that. I’m not going to link, bc all the expletives, and mourning a bright life lost. Here’s a thread instead. 1/
There is a horrifyingly typical coupling of devotion with murder, whenever disabled people are the victims. Both the reporting and the judge on such cases tend to portray murdering parents as loving, but "driven to kill.”
I'm here to say: Fuck that.
2/
I need you -- and judges and reporters everywhere -- to understand that, however difficult it may be for families to support their disabled loved ones, murder is never excusable. There are always other options. *Always*. 3/
The #autism prevalence, per @CDCgov, is now 1 in 54 children. You may see some alarmists claiming this is a crisis, a tidal wave, etc.
No. Such people are misinformed.
If anything, autism is still under-identified—& that should be our focus. This is going to be a thread. 1/
@CDCgov You need to know that the new CDC numbers demonstrate how, essentially, autistic people have always been here—the CDC is just getting better at identifying them; plus the CDC's understanding of just who qualifies as #autistic has changed over time. #neurodiversity 2/
@CDCgov The criteria for autism diagnoses have not just changed over time but changed to be more inclusive over time (Asperger's, added to the DSM in 1994, was folded into #Autism Spectrum Disorders in 2013). More info on that: link.springer.com/chapter/10.100… 3/
If you missed the recent webinar on Disability & Inclusion Strategies During #COVID19 for parents &/or children with disabilities, the full video & complete transcript is here:
If you’d prefer to read the highlights here, this is the thread for you. 1/
First sincere thanks to @magicalbridge’s Jill Asher for creating the Disability & Inclusion Strategies webinar, & to panelists @AutisticEnough, @ForwardRolling, & Anne Cohen. We addressed some issues disabled & #autistic people & their families are struggling with right now. 2/
We wanted to acknowledge that we are all stressed right now—and that's okay. Although our participants & their children represent a range of disability experiences, we are also aware that our panel did not represent disabled people of all racial and economic backgrounds… 3/