October 5, 2017

Invisible history

Posted in Uncategorized tagged , , , , , , , at 2:00 pm by chavisory

I started watching Westworld last week. In a scene in the first episode, one of the android characters, a “host” in the immersive Wild West-themed amusement park, has found a photograph in his field, discarded by a guest, depicting a woman in modern clothing standing in Times Square at night. Disturbed and confused, he shows it to his daughter, Dolores, but she’s not similarly affected (at least, not yet).

Lacking any possible context or way to make sense of what she sees, she can only say over and over again, “It doesn’t look like anything to me.”

She can’t process the possible existence of a whole reality that she has no framework at all in which to understand.

 

With the premieres recently of both Atypical and The Good Doctor, I was having a conversation about fictional representation of autistic characters–what we wish we saw more of, what we find intolerable.

And one of the things I have managed to put my finger on that unsettles me consistently, that leaves me unable to connect with a lot of the portrayals I see, is the tendency for autistic adults or near-adults to be portrayed as baffled, bumbling, almost complete naïfs about the non-autistic social world and its expectations and the realities of how things work.

As if, at the age of 18 or even older, they walked out their front door and encountered an overwhelming and often hostile world for the first time yesterday.

When, in reality, and unless we have been terribly, inappropriately isolated or sheltered (though often even then, often especially then), we’re actually well-acquainted with the fact of a world that doesn’t work terribly well for us, and we’ve been navigating it for a long time.

We aren’t dropped into our world for the first time in the opening teaser of a television episode.

A lot of writers and actors seem to be able to get their heads around what autism basically is, in terms of language, sensory, and social communication difficulties. But then it’s as if they don’t know, or can’t extrapolate to, the full range of experiences that autistic people actually live. That things have happened to us, and things have happened in certain ways for us all our lives, and those things have had consequences for who we become and who we are.

So, for instance, by the time we’re adults, we have made a lot of social mistakes and had to deal with the fallout.

We’ve often had to be responsible for ourselves in ways that other people our age haven’t, because adults haven’t been reliable sources of support. We’ve had to teach ourselves things that everyone else seems to just know.

We’ve had to be careful in ways that other people don’t and problem-solve for ourselves in ways most people haven’t.

We have to know things that most people don’t about navigating the non-autistic world. And we know more about what we don’t know than most people even realize there is to know.

We have to anticipate being mistreated or misunderstood almost constantly.

We have dealt with a lot of abuse, ostracism, isolation, loneliness, being disbelieved about our experiences and perceptions, and violation of our autonomy.

We’ve had to work harder to not just fall through the cracks of the world. We’ve also experienced uniquely intense beauty and joy, as well as many of the common experiences and challenges of growing up that most adolescents and young adults experience.

All of those things have impacts, besides that people learn and grow and are affected by their histories as they age. People become competent at dealing with the circumstances of their own lives.

 

And without that grounding in personal history, you’re left trying to construct a character’s personality around a diagnostic checklist, and you wind up with characters who are basically walking autism in some kind of imaginary pure state—without patterns of experience, without memory, resilience, or emotional connective tissue—who therefore have the social navigation skills of 6-year-olds no matter how long they’ve supposedly actually lived on this earth.

 

The more I thought about it, the more I started to suspect that this is actually what people are talking about when they say things like “But you don’t seem autistic.”

It’s not just that we don’t behave like children or that we don’t have the same “kind” of autism as a character they’re familiar with or don’t seem to occupy the same place on the spectrum as their own or someone else’s child.

It’s that the autistic characters they are used to seeing have no depth of experience.

They are people without history.

A growing number of people know children diagnosed with autism. But autistic adults are still overwhelmingly likely to be undiagnosed, or closeted, or both—if they’re not isolated from their communities in group homes or institutions or segregated workplaces, and many still are. So many people don’t really know autistic adults, or at least don’t know that they do. Their knowledge base of autistic people is still being drawn from children, or from fictional representations based on clinical knowledge of children.

And that leaves the reality of our life experiences, both positive and negative, and their impact kind of invisible. So if autistic people change or grow as people, or pick up skills we weren’t expected to, it must be because we overcame or outgrew autism, or “must be very high-functioning” in the first place…and not because we are capable of learning from our own experiences and the demands of our environment.

I speculated once (apparently in a comment now lost to the depths of the internet, sorry) that the myth of autism as developmental stagnation or eternal childhood, and a lot of “not like my child” rhetoric directed at autistic adults, stems largely from this inscrutability of what the passage from childhood to adulthood looks like for autistic people.

“They’re taught to overlook our humanity, and a lot of what happens to us is hidden from them,” writes Rabbi Ruti Regan.

Most people just don’t have a framework of knowledge about the substance of our lived experience.

So it doesn’t look like anything.

 

A lot of the time, when autistic people complain that autistic characters are unrealistic, it’s presumed to be an issue of a character not representing the traits or experiences of a certain faction of the autistic community, and we get responses like “But one character can never represent all autistic people.”

But that isn’t the problem. It’s not that they’re not exactly like ourselves; it’s that they have no depth or complexity because they have no lived experience, because their creators didn’t know how to give them one.

Well-meaning non-autistic people frequently protest that “You aren’t only autism!” but it usually isn’t we who seem to think that we are only autism and not an intricate amalgam of our innate character traits, our strengths and weaknesses, our personal histories, our thoughts and desires and fears and embodied experiences of the world.

And yes, autism pervades all of that. But it doesn’t comprise our personalities in a vacuum.

Just because we’re new to many non-autistic people’s conception of the world, doesn’t mean we’re actually new to the world. We have histories, and we are affected, like all people, by those histories.

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September 12, 2017

Disappointment

Posted in Uncategorized tagged , , , , at 9:37 pm by chavisory

A friend of mine not long ago strongly recommended the television show True Detective to me (and I’d acquired HBONow recently for purposes of playing Game of Thrones catch-up), and that is how I came to be watching it one evening last week, as it happened, right when I learned from Twitter that Matthew McConaughey had partnered with Autism Speaks and Kiehl’s on a new autism awareness campaign.

It was an especially bitter moment of irony, but sadly not an unfamiliar one.

One of the hard things about learning to let yourself love things unreservedly again when you’ve quashed that instinct in yourself for much of your life—beyond the fear that it’ll be too much, that an obsession will consume you in a way you can’t sustain, that it’ll be off-putting to other people if you let it show, or that you’ll burn out your capacity for that kind of love—is that, with a not-insignificant frequency, an artist you really, really like and respect turns out to think people like you shouldn’t really be here.

It’s a difficult risk to contend with, when you’ve only just relatively recently learned to let go and let yourself fall in love again after so long, that every now and then, you’re going to be really into something or really intensely identify with a body of work (when that’s kind of a rare experience for us to begin with), and then wake up one morning to find that that creator thinks the world would be better off without you.

It makes it hard to let yourself enjoy something wholeheartedly, when you know you have to guard your heart against this possibility.

It affects what and how much I can let a thing mean to me once I know.

And it most definitely negatively affects my willingness to pay to see that artist’s work in the future.

Even beyond the fact of channeling huge amounts of money to an organization that’s been pretty useless at best and actively dangerous, at worst, to the very community it claims to speak for, this is the harm that it does to us, individually. We’re people built for overwhelming, obsessive joy, but it’s vulnerable to put yourself at the mercy of that passion and then have your trust in it smashed like that every now and then.

Maybe it seems like a small thing, comparatively, held up against all the things we struggle with. But it happens over and over and over again, and it takes a psychic toll over time. When you always have to be a little bit paranoid that this is how your enjoyment will be answered.

I don’t expect artists to be perfect people with wholly unproblematic views any more than I expect that from anyone else, and it’s not that I think autistic people uniquely should (or, realistically, could) be shielded from disappointment by public figures and celebrities, or that basically decent people can’t sincerely have different opinions about ethical matters. But, man…I really wish that more of them would do their research and search their own hearts and maybe, maybe, not put us in this position so damn often when choosing causes or charities to conspicuously support.

That’s all.

February 16, 2017

Sometimes it’s not me. It’s you.

Posted in Uncategorized tagged , at 1:32 pm by chavisory

I have a new post up at We Are Like Your Child today:  http://wearelikeyourchild.blogspot.com/2017/02/sometimes-its-not-me-its-you.html

(Spoiler alert:  I had a bad day.)

January 10, 2017

Lost in the discussion of “lost diagnosis”

Posted in Uncategorized tagged , , at 5:34 pm by chavisory

“The past is never dead. It’s not even past,” wrote William Faulkner, and I couldn’t help being reminded of that line as I read the recent article “Compulsions, anxiety replace autism in some children,” from Spectrum magazine.

An estimated 9 percent of children with autism achieve a so-called ‘optimal outcome.’ But nearly all of these children years later develop related conditions such as obsessive-compulsive disorder, attention deficit hyperactivity disorder, anxiety and depression, the new study suggests.

“The majority of the group with a past history of autism are vulnerable to developing other psychiatric disorders,” says lead investigator Nahit Motavalli Mukaddes, professor of child and adolescent psychiatry at the Istanbul Institute of Child Psychiatry in Turkey.

So let’s get something straight right off the bat.

There is—so far as has ever been revealed—no such thing as a “past history of autism.”

If children who lose a diagnosis are socially compensating to such an extent that screening tests can no longer detect their autism, that probably reveals more about the weaknesses of a definition of autism based entirely in deficits rather than in core processing differences.

Autistic children don’t grow up into non-autistic adults. These children are likely suffering the utterly predictable effects of being forced to hide their autism or having their natural modes of functioning fractured. They’ve had their labels replaced, not their autism.

You can’t make an assertion like “Our results indicate that the improved status with regard to autism symptomatology is maintained over time” when you aren’t talking about a significant amount of time.  People compensate differently at different times of life, autistic people can experience markedly atypical developmental trajectories, and autistic adults often suffer burnout in middle age or later from decades of the strain of pretending not to be autistic.

(The study participants had “lost” their autism diagnosis at least two years before the study commenced.  That means some of them were as young as four years old when they lost their diagnosis.  For girls especially, who are increasingly having it recognized by professionals that the true extent of their social communication challenges may not be apparent until adolescence, it should go without saying that this is…insufficient.)

An autism diagnosis isn’t just “lost” by a child by happenstance, like a disregarded toy or a mismatched sock; someone has to take it away. And non-autistic parents and professionals have a long history of mistaking the label for a thing with the thing itself (as does the title of this article, conflating loss of diagnosis with loss of autism) when it comes to states of being they don’t understand well. But no loss of underlying condition, when it comes to a condition that most people with it experience as a basic neurological configuration, should be considered conclusive until follow-up at 20-30 years later, at minimum—given the now-common phenomenon of autistic people first recognized and finally able to acknowledge their lifetime of effort at “pretending to be normal” in their 40’s, 50’s, or later—finds someone no longer exhibiting the core processing differences of autism. Not just compensating for, concealing, or having learned to override by brute force the core differences in information, language, and sensory processing widely reported by autistic people as central to their experience.

“You’re never more disabled,” autistic author Rachel Cohen-Rottenberg once wrote, “than when you’re over-compensating.” And the presupposition at play in this research design that, if symptoms are failing to appear on screening tests, it’s because the autism has disappeared, not that an autistic person has either learned a specific skill set or is exerting a continual effort to perform according to expectations, is one of the most basic manifestations of neurobigotry.

It must be that we are no longer autistic, because autistic people aren’t capable of learning or trying.

And it certainly can’t be that those efforts at fakery and concealment have meaningful costs to our well-being, because autistic people are not presumed to have well-being worth preserving.

 

Also notably, the oldest of the test subjects here were 16—still minors, still most likely living under the control of their parents. The same parents with a substantial investment in believing that their children’s autism has been successfully suppressed.

Those aren’t fair circumstances under which to expect a teenager (let alone a 6-year-old), who may have been substantially deprived of bodily and cognitive autonomy (and in all likelihood, access to competing information about neurodiversity and the narratives of other autistic people) to give an accurate self-report about whether their experiences of themselves in the world are still, in fact, autistic.

Think about what revealing that would expose a kid to, in terms of parental disappointment and potential for resumed scrutiny, mistreatment, or return to invasive and demeaning therapy.

 

There’s something incredibly ironic and cruel about considering an “optimal outcome” for autistic children a future in which we suffer from anxiety, depression, and a host of other psychiatric illnesses “instead” of being allowed to grow up to be healthy, happy autistic people.

I can only hope that this research helps in alerting clinicians, researchers, and parents to the central fault in “loss of diagnosis” as a desirable goal in the first place, but I’m not made optimistic by the conclusion of the lead researcher here: “Even when we stop their special education programs, we need to continue their psychiatric and mental health follow up for a long time.”

No, you need to stop trying to turn autistic kids non-autistic.  It doesn’t work for gay kids.  It doesn’t work for trans kids.  It doesn’t work for autistic kids.

It doesn’t work.

November 1, 2016

What Every Autistic Girl Wishes Her Parents Knew

Posted in Uncategorized tagged , , , , , at 11:55 pm by chavisory

It’s Autistics Speaking Day, and I didn’t write anything, not only because my writing-on-command abilities have not been working quite the way I wish they were, but also because I have been proofreading and formatting the first anthology from the Autism Women’s Network, What Every Autistic Girl Wishes Her Parents Knew, which will be out this month (if it kills me. ; )

There are so many lines in this book that it’s been killing me for months not to be able to share or quote publicly yet.  Every single author has something important, wise, and necessary to say, and I couldn’t be more thankful to all of them.

Visit the book website to see our teaser video and sign up to be notified on release day!

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[Image reads “What Every Autistic Girl Wishes Her Parents Knew” and depicts three girls drawn in cartoon style:  One has blonde hair and blue eyes, wears a gray shirt and a bow tie and is using a cane.  One has brown skin, black hair, and green eyes, wears a blue shirt, and is sitting in a wheelchair.  One has olive skin, brown hair, and brown eyes, wears a pink dress, and waves at the audience.]

Art by Haley Moss, editing/design by Erin Human.

August 16, 2016

Deprivation of privacy and other thoughts

Posted in Marginalization tagged , , , at 1:03 am by chavisory

{This post is adapted from comments made elsewhere.  Also there’s profanity.}

From this post (Stop Isolating Autistic Adults and Calling it “Community-Based Housing“):

“It is dangerous to reveal private details about disabled people online—in part because it reinforces the narratives that we are burdens, people no one would miss if we just disappeared, or it tells people that it’s understandable to abuse and kill us because we are such burdens, and let’s all sympathize about what burdens our kids are.”

I want to draw attention to this quote because…in the neurodiversity and self-advocacy communities, we often draw parallels between the kind of thinking that excuses revealing personal or humiliating details about a child’s life online, or other various ways that disabled kids are treated differently from typically-developing kids, and the kind of thinking that ultimately excuses more overt abuse, dehumanization, and murder.

I think that those parallels are often true and justified.

But persistently violating someone’s privacy over time also just establishes a standard (to both that person and everyone around them) that it’s acceptable to persistently violate their privacy over time.

And that might seem like a small thing, comparatively speaking, but it is actually a harm in its own right, to set a precedent that a certain person, or that a certain kind of person, isn’t entitled to the same privacy and respect that other people are.

Teaching someone that they have no right to basic privacy is its own harm.

I think, having been at this a few years, that a lot of parents feel that drawing parallels between very common blogging practices, and (relatively) rare occurrences of murder or outrageous physical abuse, is hyperbolic and unhelpful and tars most frustrated, lonely, exhausted parents who are really trying the best they know how with too broadly incriminating a brush.

In some ways, I think that they are right. I know that the very vast majority of parent bloggers would never dream of deliberately harming their disabled children, don’t think of them as burdens who they wish would just disappear, and are horrified, not sympathetic, when abuse and murders come to light. No one has to convince me of that.

Not that I don’t think that the relationship between those things, and far more mundane mistreatment and ways of talking about autistic people isn’t real or isn’t dangerous; I think it is.

But often I think that jumping straight to the most rare and extreme consequences predictably inspires defensiveness and dismissal of what feel like ridiculous accusations, because most parents do find them unthinkable. (This isn’t a criticism of the author of this piece. This is a community-wide tendency, which in many cases is justified, and in some cases, I think, is less effective as a first line of argument.)

And what also gets lost is that these seemingly little, daily, constant violations—having physical discomfort or boundaries ignored, or having sensitive information revealed to an audience of strangers without your consent—are themselves a significant harm, even if an unintentional one. They don’t have to lead straight to overt dehumanization and murder in order to be wrong. They teach people subjected to them that they should not be able to expect the same level of consideration and respect as other people do.

Depriving someone of privacy over time—even in seemingly mundane and insignificant ways—erodes their sense of their own right to privacy over time.

That has consequences for the whole rest of a person’s life. That alone should be enough to be objectionable.

There are a couple of things I want to say about the comments on this article as well:

  1. “I am glad that you are a vocal self-advocate. I applaud your ability to do this. However, there are many who do not have a voice or are unable to convey their feelings and views. The person in the article is one. My daughter is another. And there are many, many others. So, what is your solution to help these individuals seek life opportunities?”

This is not a remotely new question, and yet people still throw this in our faces as if we’ve never heard it or thought of it before. As if we’ve never considered this, never encountered people more significantly disabled than ourselves, or even as if some of our fellow self-advocates aren’t, in fact, the very people they’re talking about, who have high support needs and can’t easily make their needs and desires understood.

As if we’re suddenly going to go “Oh, wow, we never thought of that! You’re right, some of us have more intensive needs than others, and that just undermines our whole entire belief system about the civil rights of disabled people.”

As if the self-advocacy and neurodiversity movements haven’t been answering this criticism for decades.

Parents, please, please take a little bit of time and read about the history of the disability rights movements. This discussion is not new, and some of the people who have been having it for many years have won some really important advances for people like your children. Read Jenny Morris’s Pride Against Prejudice, read about the history of isolated, planned farming communities and the Olmstead decision. Read Cal Montgomery’s “Critic of the Dawn,” and the discussions that happened here (the whole series, and all the comments, are well worth it) and here (again, all the comments).  There are a lot of instances in which we don’t want the same things, but there are a lot where we very much do, but I see people who seem to just not know the history of these issues trying to reinvent the wheel.

I have been following this very same debate since about 2004, but it has been going on for longer than I’ve been alive. Please familiarize yourself with it. You’re wondering how it’s possible that someone like your child could ever live in the community without you? Well, some of the people telling you it’s possible are the ones who have been coming up with solutions and insisting on her right to access them for a very long time.

You’re right, I’m very lucky to have the capabilities I do and relatively few support needs. I know. I’ve also come of age looking up to the activism of people who can’t speak, can’t live on their own, can’t manage their own personal care needs, who have been institutionalized or narrowly avoided institutionalization. We know that such people exist. Our positions about the housing and self-determination rights of disabled people include them. In many cases, were pioneered by them.

None of which means that solutions are easy or magical. But it really is not the case that we never thought to ask the question and it just destroys our whole position.

  1. “With us parents, it is our lifetime experience with our loved ones that gives us the right to plan their futures for when we are not there to advocate for them.”

If autistic/neurodiversity advocates were the ones saying “Because their disabilities are more severe than ours, your children deserve fewer rights to self-determination than we do. Your children don’t deserve to live in our communities, don’t deserve legal protection from wage and housing discrimination, and you should be forced to make all their decisions for them for the rest of your life…”

Parents would have a shit fit.

That would never, ever fly with you.

But we mostly aren’t the ones saying that. And it goes mostly unchallenged by non-disabled parents when other parents all but say just that in mainstream media coverage of autism and developmental disability.

Why is that?

I’m afraid I already know the answer, but I’m curious. Why is that?

April 27, 2016

The right to not understand

Posted in Uncategorized tagged , , , , , at 3:21 pm by chavisory

As I’m finishing this post, it’s nearing the end of Autism Acceptance Month, and almost Blogging Against Disablism Day (which is officially May 1), and the more I thought about getting around to writing it, the more I thought that it kind of stands at the intersection of those two things… acceptance of autism and disability, and opposition to prejudice based on disability.

We talk a lot during Autism Acceptance Month about the rights of autistic and disabled people to education, to employment opportunities, to accommodation and acceptance in public spaces. We talk a lot about our capabilities, and about what we understand about our experiences.

But I think that there needs to be an understood right of people—particularly young people—to not understand. And to not have that impact their right to access and to information.

Here are some examples of how what I’m talking about plays out:

My most-shared post is one in which I ask parents to tell their autistic kids that they are autistic. And every time it goes around, a certain number of people respond, pretty predictably, “But what if he doesn’t understand?”

Or “He’s too young to understand.”

Or “She’s too much in her own little world to understand.”

Or “She doesn’t look like she even notices she’s different. She wouldn’t understand.”

Or when we weigh in on issues of language preferences or sexual orientation or gender identity among autistic people, people say “My child can’t dress himself; he would never even understand this debate.”  Or “Well, you’re fortunate to be able to understand your experience this way, but my child wouldn’t.”

(Side note: There’s a lot I still don’t understand about gender identity. That doesn’t make discussion of it unimportant or useless to me. That would still be true if I couldn’t speak or type or dress myself…which I couldn’t when I was the age those kids are now.)

Or we talk about the importance of learning-disabled kids having access to the same curriculum that their non-disabled classmates do, not only material judged to be on their own instructional level.

“But what if they don’t understand” the same books as their classmates are reading?

 

Well, so what if they don’t understand? How do you know if you don’t let them even try? Is it the end of the world if you give someone a chance to engage with the same material as their age-mates and they don’t understand?

They might not, but what if they did? What if they would, but you wouldn’t even give them a shot?

 

We have to be allowed to not necessarily understand perfectly, not understand everything, not understand right away, or to try and not understand at all, without being declared forever incapable of understanding, if we’re going to get a fair chance to understand. Those have to be acceptable possibilities.

We also might understand differently. We might understand something from an angle that you hadn’t considered. We might understand something later. It is actually pretty common that we understand something suddenly, but after it’s distilled for a long, long time.

That we have access to the information is important, the whole time, not only in the moment when we come to understand it. (Somebody tell me who here really understood, like, Huckleberry Finn, or A Wrinkle in Time, or To Kill a Mockingbird, the first time you read it? To say nothing of something like Hamlet? Here’s a great essay about how practically everyone has spent many decades misunderstanding a well-known poem.  Yet we don’t preemptively decide of non-disabled students that they will not understand this poem, so they should not read it, even though chances are that they will not understand it.  White people are famously having a hard time understanding Beyoncé’s “Formation.” In my elementary school, we were taught to sing “This Land Is Your Land” in kindergarten, “Erie Canal” in second or third grade. I guarantee you that we did not understand what those songs are really about when we were five or seven or eight years old. I saw Peter, Paul, and Mary perform when I was about that age, too, and I did not understand “Blowin’ in the Wind” or “We Shall Overcome.” Does that mean we should have been denied any knowledge of those works?)

And none of this means that it doesn’t matter if information is presented to someone in a form that they can understand whenever possible, whether that means in simplified language, with pictures, subtitles, or in whatever way increases its accessibility. It means that preemptive assumptions about what someone will or won’t understand aren’t a reason to not even present them with the information (or discussion, or work of art, or material that the rest of their class is learning).

How are we supposed to wrestle with information we’re not allowed access to? How are we supposed to ever understand if the fact that we don’t understand is reason enough to keep us from the tools of understanding? Like, do you see the trap?

It starts to look like you don’t, in fact, want us to understand.

Non-disabled people are presumed to be capable of learning from experience and becoming better informed over time. Part of that process is necessarily not understanding something at some point.

If the benchmark we have to meet to be given vital information about ourselves and our own lives is that there is no point at which we don’t or can’t understand it, that’s a game we can never win, because that’s not possible.

If whatever assumption somebody wants to make about whether we will or won’t understand is enough to deny us the information that would allow us to exercise more informed control over our own lives…how are we ever supposed to gain the rights to information, or to greater autonomy?

Just don’t be disabled?

 

And one major irony is that we write and write and write and write about the importance of knowing, of having language for our experiences, about what it means to be autistic, to be disabled, about the positives and the negatives, about the harm of compliance training, about the harm of indistinguishability as a therapy goal, about what acceptance does and doesn’t mean—and the majority of non-disabled parents and professionals persist in not understanding. Often sincerely. But often willfully. A lot of people just struggle with what we’re saying, but a lot of people keep intentionally twisting and misrepresenting what we say and hearing only what they’re determined to hear.

And no one says that for the crime of not understanding, you forfeit your right to new information, or to information presented differently, or to any access to information, about yourself or the world, or your right to keep trying to understand, or to take time to process unfamiliar concepts.

Why is that?

My high school math teacher would say to us periodically, “Kids are always asking me, ‘when am I ever gonna use this?’ And the answer is…probably never. But if you don’t know it, then you definitely won’t.”

If someone is given access to a discussion or a set of information, it’s true, they might not understand it. They also might not be able to express what they do or don’t understand. If they’re not given access at all, they definitely won’t.

January 20, 2016

When it is who we are

Posted in Uncategorized tagged , , , at 12:25 am by chavisory

There’s a group of assertions that have become common, among a fraction of parents who, superficially at least, believe themselves to be taking an accepting approach towards their child’s autism or disability.

They’re not necessarily looking for a cure. They’re not subjecting their kids to 40 hours per week of repressive therapy. They’re not bemoaning their grief for the non-autistic child they lost or the tragedy that their family’s life has become.

They’re just really insistent that autism not be allowed to be meaningful to who their child is.

“But it’s not who he is. It’s just something he happens to have.”

“It’s just part of who he is; it’s not all of who he is.”

“It’s part of her but it doesn’t define her.”

“Autism isn’t him, it’s something that happened to him.”

Lately it comes to dominate discussions that aren’t even about person-first vs. identity-first language choices, so fearful is the notion that autism might have any sway in who a child is.

And in some ways, I am more frustrated with this variety of denialism than with the way more openly hateful outlooks of curebie parents. In some ways, I think the parents who far more openly hate their children being autistic are being more honest, as deeply unfortunate as I find their position, than the ones hiding fear and disgust behind “There’s nothing wrong with my child as a person; this is only a thing that they have. It’s not really part of them.”

“It’s not who they are.”

Because that would be the worst thing.

What if it is, though?

What if they can’t meet your demands that they cut themselves off from that much of their psyches? What if they can’t or won’t hack themselves up that way?

As long as it’s not actually who you are, isn’t actually de-stigmatizing.

Just as long as you can let us believe that this isn’t really part of you is not actually acceptance.

Just as long as it doesn’t have real consequences for how you have to live your life.
Just as long as it doesn’t affect you in any significant, unavoidable way.
Just as long as it doesn’t mean anything to you, let alone anything good.

Just as long as it’s fundamentally separate from you.

If it kind of sounds like “Love the sinner, hate the sin,” that’s because it kind of feels like it, too.

Being forced to hold something true and essential about you at arm’s length for years and years, being told that you’re not really the person you are, that the real you, the correct you, is someone who doesn’t move through the world the way that you do…that you are not really like this, it’s just something that you have….

(Let me tell you something about trying to do this. The horrible part isn’t that it can’t work; it’s that it can, for some amount of time, anyway. The result isn’t a person who isn’t autistic, it’s a person who feels like a stranger or a ghost in their own life.)

As long as your whole experience of the world—the way language and emotion, music and light, passion and movement, space and time work—isn’t really innately woven into who you are…

It’s a variant, not a repudiation, of who you are is not acceptable. You’re only a person if you aren’t like this.

“But it’s not who he is.”

How would you know? (How good were your parents at reading your mind, at knowing how you truly and deeply felt about yourself as a child? How right were your parents about who you’d grow up to be? How psychic about these things are parents, generally speaking?) Would she tell you? Would she have the words to? What expectation have you given her about how you’ll react if she comes to you and says “Yes, it really is?” Have you exposed him to the diversity of first-person viewpoints that would allow him to know one way or the other? Is he allowed access to autistic people who describe their own experiences in various ways? Different autistic people do have different conceptions of what autism is to them. Most say that it is part of who we are, but some don’t; the point is that we all, individually, have the right to make those judgments about our experiences and internal lives and descriptive preferences. Do your children not have the same right to conceive of who they are or aren’t for themselves?

What if it actually is? What are you going to do then?

September 15, 2015

Thoughts on NeuroTribes

Posted in Uncategorized tagged , , , , , at 11:29 pm by chavisory

I wasn’t going to write a formal review of Steve Silberman’s NeuroTribes, because plenty of other people have done so admirably, but I finished reading today, and I just wanted to casually share a few things that struck me….

-The extent to which WWII and the rise of the Nazis shaped the personal history and viewpoints of so many of the early pioneers in recognizing autism: Asperger, Kanner, the Frankls, Bettelheim.  And the extent to which some of these people who had suffered horribly or lost family to the Nazi regime reacted so…counterintuitively… to the issue of autism, taking the route not of “these people are misunderstood and being treated unfairly,” but “this thing that we don’t understand, we have to stamp it out.”  Who saw what virulent xenophobia can do, who were themselves some of its victims, and yet who largely revisited it upon several generations of autistic kids.

I could almost read a whole other book just exploring the impact of WWII on the lives and thinking of the major players in the early history of autism’s recognition.

-The extent to which so many of these early prominent experts were making shit up.  So little interpretation of autistic traits or interiority or experience is substantiated by evidence as opposed to shoehorned into personal theories.  The extent to which so many things that people have thought they knew about autism over the years were just what some semi-professional like Rimland or Bettelheim decided about whatever their own pet theory was.   Like Rimland’s writing that real autistic people never spun or toe-walked and always had savant skills….

-And the extent to which personal agendas or personal ambitions shaped what so many of these people said about autism.  Kanner trying to play both sides of the field regarding whether autism was an inborn genetic feature, or inculcated by bad parenting, for instance.  Public opinion about autism and the fate of autistic people often come off as pawns in these self-appointed experts’ personal quests.  

-I did not expect to wind up so upset with Lorna Wing.  Her “parents won’t accept having a child with autism, but they’ll accept having a child with this interesting new syndrome!” line of reasoning regarding Asperger’s Syndrome….has really left us in a mess.  Even more than Asperger’s emphasizing the strengths over the disabilities of his clinic patients in attempting to safeguard their lives, this rationale would seem to have established and perpetuated this binary, divisive thinking in a lot of the parent-advocate world that Asperger’s Syndrome isn’t real autism, that “ultra high-functioning aspies” have a totally different condition than what their severely-affected, “classically autistic” children have, that acceptance and accommodation might be fine for people with Asperger’s Syndrome, but their children with “severe” autism need a cure, etc.

-There are multiple stories of parents being told that their infant child was mentally r*tarded, and that being taken at face value.  How did it come to be believed that was a thing you could even know about an infant?

-I think that this book is best considered not as a comprehensive history of autism or autistic people, or of autism as experienced by autistic people.  This book is laying out a really specific thesis about how what we think we know about autism came to be, and how professional and popular knowledge of autism has been distorted by that history.  It’s a modern history of how the personhood of autistic people has been libeled in the interest of certain ideologies and professional ambitions and how that is just starting to be undone.

And so, it’s not that I don’t share frustrations over lack of portrayal of autistic women and people of color (and also of rural autistic people, autistic people in the arts and humanities rather than STEM fields, queer autistic people, etc.), but knowledge of those people’s lives, too, is a casualty of the history of how and why people thought about autism, of the racism and sexism of those professionals and of the times in which they popularized their own views, and of a lot of the stereotypes and prejudices that they’ve left us with, and not simply a weakness of the book.

NeuroTribes is not a perfect book or a flawlessly comprehensive book, but it is a deeply necessary book.  I have seen other criticism that the stories and perspectives of autistic people ourselves seem to take a backseat for much of the book compared to the stories of professionals and researchers.  And I found that true, to an extent.  NeuroTribes is not the chronicle of autistic people and autistic culture that we still need and want, but I think that it stands a good chance of helping pave the way for those stories to gain more widespread acceptance.  It has been too easy for any substantial work by autistic people about autism to be written off as the perspective of only the token, exceptional, “very high functioning.”  Or of the supposedly very rare non-verbal person who finds a method of communication and turns out to actually have a profoundly articulate “intact mind” after all.  It’s been so easy to marginalize autistic narratives this way precisely because of the history of distortion at the hands of professionals we’ve been saddled with.  This isn’t the history of autistic people and autistic experience that we want; this is a history of our sidelining from our own lives and histories that helps begin to set the record straight about how that happened.  It’s a course correction, not a conclusion.

Anyway, consider this an open thread–I’d love to hear your thoughts.

June 19, 2015

On collecting labels

Posted in Marginalization tagged , , , , , at 2:43 pm by chavisory

The inspiration for this post emerged somewhat tangentially to an incident on Twitter several months ago, in which a pair of parent bloggers decided that publicly posting sensitive and humiliating information about their autistic teenager was a great thing to do for awareness. Plenty of other people wrote or responded to the inciting incident, so I don’t really feel the need to address it much further.

But something else happened in the aftermath that I actually do think deserves to be talked about more.  It’s not even really about autism or disability itself as much as it’s about language deprivation and identity and the denial of minority experiences as genuine.

In a comment on one of the early Facebook threads about this particular series of Twitter posts, I said to this couple, “You need to read up on what exposure anxiety is, and what its effects are.”  (Exposure anxiety isn’t even the central subject of this post, although I do recommend everyone to read about what it is.)

They said that they weren’t interested in anything I had to say. Nothing new. But a couple of other people were, and there was a conversation about what exposure anxiety is and why it matters. One friend said yes, that makes so much sense as to why the kids she teaches are often able to do some things but not others even though they seem closely related. One friend of a friend said “Holy cow, there’s a word for that?? That’s really a thing?!” and started a Facebook discussion herself about having been so glad to find this out.

And it was not very long at all before someone was accusing her in comments of “collecting labels.”

This is a really, really common accusation against people with a diagnosis of some kind. That we’re just “collecting labels,” “collecting diagnoses,” and “identifying too much with a diagnosis,” closely related to “using it as a crutch,” or in contrast to the ideal of someone who “doesn’t let their disability define them!”

But listen, people who make this accusation? People who don’t understand, because you’ve always just felt like a normal person?

You also go through life collecting labels. You also have a whole collection of terminology and shortcuts and vocabulary for thinking about how you work and things affect you.

The difference is, you grow up with a common language for common experiences with the people around you, for the most part. We don’t. We grow up often in a void of knowledge and vocabulary for how stuff works for people like us, and often deliberately deprived of it. (When parents decide to just never tell a kid about their disabilities? That’s what they’re doing.)

We try and try and try to make the language that we have available fit our experiences, trying to meld and forge and hammer language around experiences it wasn’t built for. Or we try to shoehorn our experiences into the language available.

It never, ever quite works, and the cognitive dissonance can tear you to shreds, or leave you feeling unreal in your own life, or like you’re kind of always walking through the world as a ghost.

Or you start making up your own language for things just to have a reference point if only to yourself. (In many instances, I’ve seen it turn out that different autistic people have come up with almost exactly the same language for a certain thing, almost or totally in isolation from each other. Or that even if I didn’t come up with the language, I’ll hear a phrase or piece of terminology and know exactly what it means, the first time I’ve ever heard it, because it describes so well, so intuitively, something that I’ve never been able to.)

I think you don’t actually do less label-collecting than we do, you just get to do it in a way that’s taken for granted as normal, from a much earlier age. I mean, unless you just don’t use descriptive phrases for the things in your life or the experiences you have in common with other people, or what your problems or weaknesses are, that help make sense of those things to you. Do you use any kind of shorthand language to describe your needs usefully to both yourself and others in a way that makes it more likely that you will be able to find some kind of solution or assistance?

That is what gets us told not to “use it as a crutch.”

Your right to learn how to apply language to your experiences is taken for granted, because your experiences are largely taken for granted as real. (The core belief, at the basis of most prejudice about disability, is that it is fake.)

Typically developing kids are widely regarded as having this right. Disabled kids, queer kids, kids who are atypical or exceptional in some other way, are not widely regarded as having this right.

We tend to be much older by the time this starts happening for us in a meaningful way, or by the time the crazy patchwork of scattered fragments of information starts looking like a coherent understanding of why everything is different for us.

Of course we’re thrilled when we start encountering explanations for our experiences that are more accurate, and useful, than stupid, lazy, rude, psycho, freak, immature, dumbass, selfish, stuck-up, incompetent….

Because for as much as some people have a problem with us collecting labels, they don’t seem to have such an issue with giving them to us. It’s almost like their problem isn’t with people having labels, it’s with their own inability to accept that any experience of the world is genuinely different than their own and warrants different methods of coping.

Or that for once they aren’t in control of what other people get called or whether our experiences are taken seriously.

I mean, try picking one thing about yourself, one thing you know intimately from long-term personal acquaintance, either positive or negative or just important, that’s really important to your ability to understand yourself and make sense of how the world works for you. Try imagining that you don’t know any words for that thing, and you never have. And then you find some.

In that moment—spoiler alert—you feel like the richest person on earth. You’re rendered speechless with astonishment, or you want to whoop with the thrill of recognition.

And then someone comes along and goes “Ugh, you’re just collecting labels.”

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