Autistic Commonality and the Illusion of “Quirky”

Emily Paige Ballou
chavisory.wordpress.com

Some people insist on describing the autistic spectrum as ranging from the non-speaking and very profoundly disabled, to the “just quirky.” 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.” Some of those same people even insist that autistic people who are “just quirky” should probably have a different label than 'autism' altogether.

Meanwhile research shows "camoflauging" influences autistic suicidality
[image: Screenshot of a tweet. The icon and user name are blurred. The tweet
reads, "If u can"disguise" your autism then imo u cannot possibly have autism.
#NeedRealDiagnoses #SuckItGroupingEveryoneUnderOneLabel
#FocusOnObjectiveReality"]

But I actually wouldn’t mind if the word “quirky” were to disappear entirely from autism discussions, 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."

Because no autistic person is “just quirky.”

Autism has specific diagnostic criteria. Though these criteria have changed and broadened since autism first appeared in the DSM in 1980, the more important changes leading to autism's diagnostic explosion hinge on discrediting outdated and invented prejudices about who can and can’t be autistic. At various times, it has been believed—implicitly or explicitly—that people who could not be autistic included adults, women and girls, people with intellectual disabilities, 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.

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.

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.” That’s a characterization far more likely to be used to deny a 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.

When I’m talking about our need for acceptance and respect as autistic people, 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 and collage art and eating breakfast food for dinner, those are not what I’m talking about when I’m talking about being autistic.

When I’m talking about the challenges posed to me by inertia and task-switching and 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.

When I’m talking about language processing differences that can leave me feeling like I’m speaking English as a second language compared with NT peers, 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.

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.

And I’m sure not talking about being quirky when I describe being pushed into meltdowns by disruptions to my routines or expectations, 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.

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.

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. 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.

The DSM defines autistic people as having commonalities in social communication issues, restricted interests, repetitive behaviors, and impairments in adaptive living skills. Autistic people, and 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, and atypical experiences of language.

What autistic people tend to share are those autistic commonalities. 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.

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 (and that probably contributes to much of this present confusion), many autistic people experience, and conceive of, those observed features as resulting from a deeper stratus of physical and cognitive experiences of the world.

And many of those perceptual experiences are described remarkably similarly by people all across the spectrum. This means that while the expression or “severity” of our challenges as autistic people may vary widely, but the underlying reasons for those challenges often prove similar.  That is why a 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.

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 are 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 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 when, shortly after I’d been diagnosed and started connecting for the first time with both autistic and parent blogging communities online, the mother of a young man with very extensive verbal communication difficulties described instances when he would suddenly seem sad or even start 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.  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’s something most of us had actually experienced.

An autistic person who has an autism diagnosis had a professional believe they should have that diagnosis for good reason. It’s not that 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. Autistic people are, troublingly, more likely to have 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.

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. It’s not okay to dismiss that first person's lived experience as having nothing to do with “real” autism simply because you don’t understand what autism is like for them.

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.

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What the Neurodiversity Movement Does—And Doesn't—Offer

Emily Paige Ballou 
chavisory.wordpress.com

Autistic folk of diverse abilities somehow enjoying each other's company
[image: Three white autistic people. Two adults: Sara Luterman and John Marble,
and one teen, Leo Rosa, hanging out in front of a Hayes Valley coffee shop.]

It has long been a commonplace accusation against the neurodiversity movement that those of us among the autistic community who are neurodiversity supporters comprise the “very high-functioning,” and that while it’s fine for us to say that what we really need is acceptance and accommodation—we simply don’t understand the challenges of the truly disabled.

This accusation is in stark contradiction to the fact that, from its inception, not only did the neurodiversity movement’s values include the most significantly disabled, but that those individuals themselves were among our earliest pioneers. And that going back even further, the self-advocacy movement didn’t originate with the autistic community at all, but rather largely was led by institutionalized people with intellectual and other developmental disabilities.

Neurodiversity says that neurodivergent people are fully human, should have same rights as other people. No, there's no middle ground.

— Emily Paige Ballou (@epballou) July 22, 2017

We’ve also been having this discussion about neurodiversity, along these same basic parameters, for a long time now—with both sides firing back many of the same basic points:

• Neurodiversity denialists: Neurodiversity advocates are fundamentally different from, and cannot speak for, the "severely affected," e.g., our autistic children who can’t communicate, self-injure, are aggressive, have epilepsy, have GI troubles, etc.
• Neurodiversity proponents: You cannot actually know the particulars of another person’s disability by how well they can communicate on the internet. Many of us actually experience the same challenges neurodiversity antagonists cite as only afflicting the "truly disabled." We’re not trying to speak for everybody, we’re standing up for everyone’s right to speak for themselves.

We’re going on circles, and recently, I think I might have gotten a clue as to why.

Lately, on Twitter and elsewhere, I’ve witnessed this basic argument take on a new phrasing:  That we have “nothing to offer” autistic people with more significant support needs.

I was confused at first, thinking of many of the initiatives and developments undertaken by members of the neurodiversity and broader disability rights movements which absolutely apply to all of us, from the successful fight for the $10.10 minimum wage on federal contracts to include those employing disabled people in sheltered workshops, to advances in recognition of the rights of all disabled people to live in our communities with support and not in institutions, increased recognition of the right of all disabled students to meaningful inclusion, literacy instruction, and access to AAC.

I also think about how the Autistic Self Advocacy Network (ASAN)—which is entirely staffed by autistic people—has released toolkits written in plain, accessible language on subjects like political participation, voting, advocacy, safety in the community, abuse, and self-advocacy in sexual and romantic relationships. Their work this past year has been instrumental to preserving the Affordable Care Act, and the provisions of Medicaid that allow many autistic and disabled people to receive services and live at home, rather than being forced into institutions, and also in the fight against discrimination in organ transplant decisions on the basis of disability.

I think about how, when parents and families persistently report that they need better respite services, one of the major aspects of the neurodiversity movement’s long-running protest of Autism Speaks is that for all the revenue it takes in from community-based fundraising, it returns extremely little in the form of tangible support to families and autistic people ourselves.

I think about how Neurodiversity advocates plead with autism researchers for more and better research into co-occurring conditions and assisted communication.

These are all issues that absolutely and intimately affect the lives of autistic people who are significantly disabled, as well as those who are multiply disabled. Presuming that neurodiversity critics aren’t simply ignorant of these efforts (though that’s certainly possible), why do so many remain insistent that neurodiversity doesn’t have anything to offer their disabled loved ones?

I do my level best not to make presumptions about other people’s beliefs or mental states, but as I try to unravel what could possibly be meant by this, what I am beginning to suspect people mean when they say that neurodiversity has nothing to offer the severely disabled, or people like their child, is that we cannot make their loved one non-disabled.

To a large extent, they’re right. We can’t do that.

Or, we certainly can’t do it alone. The social model of disability, basically, says that disabled people are disabled not by our physical or sensory impairments, but by the failure of society to accommodate people with those conditions in the same ways as it does people without them. When businesses don’t have ramps, wheelchair users are disabled by lack of accommodation and not just inevitably by their physical condition. It is a massively important concept that underlies a lot of the recognition of disabled people as equally deserving of public access as non-disabled people.

And to be honest, I’ve always found it a little bit incomplete and unsatisfying.

There are aspects of being autistic, for me, that I doubt it’s possible for society to accommodate perfectly. That, even if society did a substantially better job at accommodating autistic people, being autistic would still markedly affect how I live, and will always leave me expending more effort than the non-autistic people around me just to get by. These experiences aren’t superficial, and they are never going away.

I say this not to undermine the importance of the social model to the thinking of the disability rights movement, but to say that I think I understand at least some of what neurodiversity skeptics are trying to convey, when they counter that accommodation doesn’t just solve everything.

I will always be disabled. I don’t see that not being the case within my lifetime. There are, without a doubt, important roles for government, education, technology, and medicine to play in mitigating disability, but I will always be disabled in ways that even perfect acceptance and accommodation probably cannot erase.

So, neurodiversity critics need to understand that we who support neurodiversity aren’t confused about the fact of your child or loved one being really, truly disabled. We know there are non-speaking autistic people, epileptic autistic people, self-injuring autistic people. We know this because many of us are non-speaking, epileptic, and self-injuring autistic people.

Those of us who can communicate on the Internet believe that what we are saying about our own needs applies to the rights and needs of other disabled people, including the children and loved ones of neurodiversity detractors. So when we talk about the rights, acceptance, and accommodation that autistic people deserve, we are not the ones who think those things are only for people like us. 

Those of you who say that your children or siblings would never be able to advocate in certain ways: Maybe. But, thing is, we don’t believe that those ways are the only kinds of advocacy that matter or count.

“When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy ... When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy ... When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy,” -Mel Baggs in “The Meaning of Self-Advocacy,” from the anthology Loud Hands:  Autistic People Speaking

When we say “Everyone can self-advocate,” we don’t mean “All of us can speak in conventional and highly formalized ways in settings that favor a very narrow construction of political advocacy” (although if those settings were more prepared to offer accommodation for significant communication differences, it would certainly help). And we don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.

Neurodiversity critics say, "our children will never write or speak like you 'high functioning' autistics do." Maybe not. But then again, at least one person who I actually know has, within the space of a few years, gone from being considered incapable of meaningful communication, to authoring her own blog and co-directing a documentary film, after she was provided with the resources necessary for her to do so. So we neurodiversity supporters are not the ones who believe that verbal eloquence is the only form of expression with meaning or value. Your child might never testify in front of Congress, but we aren’t the ones who believe that that makes the rest of their communication unimportant.

You say your children will never go to Harvard or William and Mary. Maybe not, but an elite private college education isn’t the only viable path to a rewarding life (and besides, the first ever non-speaking autistic student just graduated from Oberlin College).

We neurodiversity supporters believe that what someone can do matters. We believe that the way someone can communicate matters.

We also reject the equation that accepting autism and disability means giving up. Research consistently shows that autism acceptance leads to better mental health for parents as well as autistic people themselves. Evidence is mounting that acceptance and accommodation provide a more reliable path to increased capability and independence than fighting autism or disability does. Acceptance isn’t a cure, but it does facilitate recognition and support of abilities that often go unrecognized and under-valued. We are better off when not only our disabilities, but our real abilities, are recognized.

It follows that autism—yes, even involving a significant degree of disability—should not be a reason why we are kept from accessing communication, education, employment, competent medical care, the right to make our own decisions and live on our own terms, friendship, romantic relationships and sexuality, freedom from abuse, or the basic premise of our lives being acceptable.

There is already a history of people trying to eliminate neurodevelopmentally disabled people. It’s not a good history. We can’t make anyone non-disabled—that isn’t what neurodiversity adovcates are offering—but we also don’t believe that being non-disabled is the only right way to be a person.

If you are a neurodiversity skeptic, maybe it looks like, from your end, that we who champion neurodiversity have the luxury of declaring “We’re okay the way we are; we’re valuable to humanity and people like us should exist” to the extent that we don’t seem disabled in the same ways that your loved ones are disabled. Their disabilities are such that we can’t take them away, nor can we make them into people more like us, whatever you imagine our abilities to be.

If I’m even a little bit right, if you recognize yourself at all in this conjecture, then what I want to ask of you is this:

Try to separate autism, or disability, in your mind, from the sense of impossibility of having lives that are rich and complete. From assumptions that people disabled in certain ways only get to have a certain kind of life. Whatever autism looks like for the person you love, disrupt the logic that says that only if they were not disabled in those ways, could they have something of value to contribute, or be entitled to lives of autonomy and acceptance.

You are right; we cannot make your autistic loved one non-disabled. But we can help make a future that has room for people like your child in it, complete with the rights, the access, and the supports they need to live their fullest life. We think that that is doable. We think that that is right.

Yes, autistic lives are different. Yes, they are often hard. No, they will not look like the lives of non-disabled people.

We just don’t think that that makes disabled lives wrong.

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