July 9, 2020

Posted in Uncategorized tagged , at 11:59 am by chavisory

Hi everyone! In case you missed it, I have a new post up at the Thinking Person’s Guide to Autism again this week, “When Adaptation Looks Like Laziness,” about some of the ways we may try to adapt to executive functioning or motor planning issues when we don’t necessarily know how to explain what’s really happening. Hope you enjoy!

January 28, 2020

Donation request–Autistic People of Color’s Fund

Posted in Uncategorized tagged , , at 2:20 pm by chavisory

Hi all! As you may or may not know, I’m also a social media volunteer for the Autistic Women & Nonbinary Network (AWN Network). One of the community resources we make available is the Fund for Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment (or the Autistic People of Color’s Fund for short). The fund exists to provide direct, individual financial aid to autistic people of color for a variety of needs, due to the disproportionate barriers accessing services and community support often faced by autistic people of color.

In the past week or so, we have received a record number of applications for assistance.

I and many other autistic people have written often about how the financial priorities of the biggest and most visible autism organizations fail to support our actual well-being. If you’re able and would like to contribute in a way that will support the quality of life of autistic people materially and very, very immediately, the link for more information and how to donate is here.

January 15, 2020

Institutionalization and Daryl Hannah and autistic people like me

Posted in Marginalization, Uncategorized tagged , , , , at 6:20 pm by chavisory

[This post is slightly expanded from a recent Facebook comment]

A friend posted this article about Daryl Hannah this week, which is a few years old, and which I enjoyed very much despite the totally melodramatic and unnecessarily stigmatizing headline (which she probably had no role in choosing).

And though the fact of Hannah’s autism, and the fact that autistic people can and do succeed at counter-intuitive, high-visibility careers like acting, is old news by now (and Sense8 has sadly reached the end of its run), I think it’s especially worth drawing attention to one aspect of the article, because it bears on an issue that is still very much under discussion in the autism community.

In particular, the childhood history Hannah relates really highlights how the gulf between autistic people whose parents and professionals say need to be in institutions because of the severity of their autism, and those of us who they say are “mildly affected” and just can’t understand, is just not what they assume it is.

Daryl Hannah is someone who could well have been institutionalized, had her parents believed the doctors who recommended it. And then anything that happened to her there, any deterioration of her condition, any given set of skills or knowledge she failed to acquire as a result of institutionalization, would have been used as evidence that she belonged there and not as evidence of injury by institutionalization. She’s probably right that she’d still be there today.

And today, she’d be being held up as an example of someone whose condition was so severe, whose daily living skills and ability to exercise autonomy was so lacking, that it was clearly understandable to institutionalize her, rather than someone who’s so outrageously successful her autism obviously can’t be that serious. Or that even if she is, she shouldn’t talk about it or use that label for herself because it takes attention away from autistic people with more intensive support needs.

When really the only difference is in the kind of chances she was given.

I know I’ve quoted my high school math teacher before, who said “A lot of times kids will ask me, ‘When am I going to use this?’ And the answer is, ‘Probably never.’ But if you don’t learn it, you definitely won’t.”

Someone never genuinely given a chance to live and grow in their own community, never will.

Daryl Hannah narrowly avoided institutionalization. And for all that some factions of parents and autism professionals will say that this isn’t really about autistic people like me or Daryl Hannah, for as different as they say I am from autistic people who they insist really do need to live in institutions, frankly, if it could’ve happened to Daryl Hannah, it could’ve happened to me.

I don’t think somebody else’s kid really does belong in an institution because their support needs really are greater than Daryl Hannah’s, or mine. I think they deserve to live in their communities as much as she or I do.

I think the rest of us would be as fortunate to have a chance to know them and have them in our lives as much as we are for the pleasure of having Daryl Hannah’s art in the world instead of having her locked in an institution while we’re told why she really belongs there.

November 1, 2019

Would you believe your own child? (Autistics Speaking Day 2019)

Posted in Uncategorized tagged , , , at 11:42 am by chavisory

For Autistics Speaking Day this year, I actually have a question for parents.

If you’re the parent of an autistic kid, and you have ever told an autistic adult (or are still in the habit of doing so), “If my child could speak or write like you, I would consider them cured…” or anything along those lines…

What if they could?

What if some form of treatment or therapy, that currently exists or that might yet be developed, works, and your autistic child gains the ability to share their thoughts in speech or writing?

And what if they said to you, “But I’m not cured.”

What if they said “I am working so hard, in ways I don’t even know how to explain to you.”

“I am so tired.”

“This is draining all of my cognitive and internal resources and I don’t know how long I can actually keep it up.”

“Maybe this looks easy to you, but it feels like my brain is swimming in molasses or doing complicated gymnastics to me.”

“Yes, I can talk, but you’re still speaking a foreign language and every time I answer you I’m carrying out a multistep process of translation and back-translation.”

“I was a real person this whole time. I heard every word you said.”

“I’m actually engaging in this act of elaborate fakery which makes me exhausted in order to make you happy because apparently that’s the only way I get to have rights or choices.”

(Or just because it hurts for you to be so unhappy with me all the time.)

“Sometimes being autistic is hard but sometimes it’s wonderful. I don’t need to be changed as much as I need other people to respect that I exist in the world differently.”

Would you believe them?

Or would you say “No, you’re cured! You’re not autistic anymore.”

Or “That’s great for you, but some people are really disabled.”

Or “You must be very high-functioning.”

“But some autistic people can’t communicate at all.”

“Not everyone is like you.”

“What gives you the right to speak for all autistic people?”

Is that what you would say to your child, if they were to gain an ability you say you dearly wish they could, if they were able to illuminate for you some aspect of why things are difficult for them in the ways that they are?

Would you treat them the way you treat other autistic people who’ve committed the sin of being even slightly articulate on the internet, and saying things like “I think we all deserve acceptance, I think our needs deserve respect, I think we all deserve not to have to live in institutions, I don’t regret my life the way it is?”

We often say that the way you treat autistic adults now is how you’re teaching other people to treat your child when they’re older.

You’re also telling your child how you’d treat them if, heaven forbid, they actually accomplished what you say you want.

And if that’s not how you would talk to your kid if they could speak or type, if they could translate their thoughts and wishes and experiences of the world to you…

Then why is that the way you talk to autistic adults you’re so convinced don’t have anything in common with your child now?

A few years ago, Maxfield Sparrow asked, in a post for We Are Like Your Child, “Do you believe in your children?

My question is… Would you even believe your child? If they said the kinds of things you say you wish they could say?

August 16, 2019

Betrayed on Sesame Street

Posted in Uncategorized tagged , , , , at 2:37 pm by chavisory

I wrote this story down intending it to be part of a different post entirely, about a particular set of musical experiences. I didn’t really want to be telling it for this, but here we are.

A few years ago, shortly after Sesame Street came under fire from the autistic community for its participation in Autism Speaks’ annual Light It Up Blue campaign, I was one of many people, invited through various organizations, to give feedback on development of the “See Amazing” web materials, centered on the character of a 4-year-old autistic girl.

I didn’t have any illusions that our feedback would all be incorporated or that the end result would be everything we wanted, but it was a chance worth taking that some of it would be, that we could affect on a really basic level what American children learn about autism.

And what might be some of the earliest representation of themselves that autistic children ever see.

I got very busy, and when the campaign was finally released to the public, amid a flurry of mixed reviews from the autistic and parent communities, I just didn’t have the bandwidth to engage with any of it. But some of the criticism was confusing to me based on the initial materials I’d seen, which had been deeply imperfect, but also far from being anywhere as offensive as many mainstream depictions of autistic children or characters. There were fallacies that I hoped would’ve been corrected; there were places where I hoped the focus or language would be shifted, but for a curriculum set aimed at preschool-aged children, it had had a lot of good potential. Of course different people can have sincerely different reactions to the same thing, but it made me wonder whether the final product had somehow gotten much worse than it had started.

I was too afraid to find out.

Spring of 2017 came and, once again during a week when I just didn’t have spoons to spare, the announcement that Julia would become a real muppet, and not only a web character, and another wave of commentary that I didn’t feel I could usefully engage with until I had my own opinion of the results. But I hadn’t watched any of it. I just didn’t have it in me. Although assertions like “obviously they didn’t talk to autistic adults” made me furious, as I knew that they had. I didn’t know what the impact of our contributions had been, or if it had been disregarded entirely.

Finally one morning I knew it was past time that I caught up with Julia, and clicked on a video, of Abby Cadabby and Julia singing the Sesame Street theme song together. It started with Julia alone with her bunny, humming to herself, before Abby joins her. I assumed I knew how the skit would go. Abby would join in and sing along, Julia would keep humming, and they’d finish the song together, each in her own way. Cute. Mostly harmless.

But then after Abby sang a line, Julia started singing, too, and my jaw hit the floor.

I couldn’t figure out how they’d come up with it; I had never told anyone about this yet. I had never seen this portrayed or described anywhere.

Julia’s echolalia worked just like mine.

And the message wasn’t “See? She can be included too, even though she has autism!” She just was. It was that her echolalia was just like mine, and it was just …okay.

I have seen a lot of autistic characters portrayed in media. I’ve felt genuine kinship with some of them.

And I had never, ever seen that.

And yes, the portrayal of the character and the way her story was told was imperfect in many ways, but that mattered, and it was something I wanted four-year-old autistic kids, and four-year-old non-autistic kids, and their parents and families, to see

That the way we do things can actually just be allowed to be okay.

I went back to the notes that I’d submitted to see if I could figure out if I’d said anything that could have caused this, but I hadn’t really. It was extreme serendipity, or something someone else had suggested, or that the alchemy of all of our input together had made such an extrapolation or leap of understanding possible, I guess.

Research even showed that exposure to the program measurably increased parental feelings of competence, acceptance, and hope for their autistic children’s potential to be included in the their communities.

And it made what happened next all the more a betrayal of our input and good faith.

This week ASAN announced the end of its partnership with Sesame Street and the “See Amazing” program, after the show leadership declined to reverse course from its decision to use Julia to advertise Autism Speaks’ 100 Days kit, notoriously full of stigma against autistic children and poor-quality information.

A friend asked whether any of us are truly surprised by this development, and the answer, I guess, is no, not really. But it still hurts, like so many things that happen to us again and again and again and yet still hurt, every time. Like so many things that you see and hear when you’re an autistic person at all engaged with a popular media that presumes people like you aren’t watching or listening.

But God, there was so much reason to hope this time.

I really think Sesame Street owes the autistic community, and every family for whom Julia’s inclusion had been a positive development, an explanation for this.

May 23, 2018

Posted in Uncategorized tagged , , at 11:42 am by chavisory

Hey everyone!  I’ve got a new post over at TPGA again this week, “Autistic Commonality and the Illusion of ‘Quirky.'”  Check it out!

February 11, 2018

Posted in Uncategorized tagged , , at 11:26 am by chavisory

In case you missed it, I’m over at the Thinking Person’s Guide to Autism this week, talking about misconceptions about the neurodiversity movement!

http://www.thinkingautismguide.com/2018/02/what-neurodiversity-movement-doesand.html

November 1, 2017

Autistics Speaking Day 2017: What I would say to autistic people who want a cure

Posted in Uncategorized tagged , , , , at 2:12 am by chavisory

 

ASDay 2017

Autistics Speaking Day was founded several years ago in response to a particularly ill-conceived charity campaign, as a way of resisting the narrative that we are or should be silent or non-communicative. We’ve utilized it, largely, to talk and write about the truths of our lives and refute common misconceptions to a largely non-autistic audience.

It has been less focused on autistic people speaking to each other. That’s what I’m hoping to do today.

Recently I was asked, in the context of a broader conversation on Twitter about the foundational principles of neurodiversity, what I would say to autistic people who do want a cure or support the development of a cure for autism. This post is adapted from that discussion. I’m not sure it’s what the person who asked me expected, and I’m not sure how many people who fit that description might ever read this, but, well, this is what I would say.

1.  You have a right to your feelings. I’m not going to tell you that you shouldn’t think or feel this way. I’m not going to tell you that you only want this because of “internalized ableism.” I’ve never found attempts to argue other people out of their own feelings very effective, and I really hate it when other people try to tell me what I feel and why.

You have a right to feel the way you do about your own life. I’m sorry if you’ve encountered autistic communities where it was suggested that that wasn’t true.

I think too many of us spend our lives being told that by too many other people. It’s not right, and I’m not going to do it.

2.  However, your feelings and wishes are no more real and genuine, or more authentic an experience of autism, than mine are. I’m not sugarcoating the experience of autism when I talk about why I oppose cure-based research and favor acceptance; I’m telling the truth about conclusions I’ve come to from my own experiences as well as a lot of listening to other people from all sides of this debate. And it would be a mistake to assume that those experiences were easy or mild just because I have not come to the same conclusions that you have. Chimamanda Ngozi Adichie discusses “the danger of the single story” when the single story is a stereotype imposed from outside a culture or marginalized group. But I think one of the biggest dangers that the culture of the autistic community faces is the allure of a single story told from within.

Neurodiversity advocates get told a lot that we “don’t speak for all autistic people.” That’s true.

Neither do you.

3.  I actually think you should have a right to access any treatment or therapy (within certain standards of demonstrated safety and effectiveness that any drug or medical device is required, for good reasons, to meet in this country) that you and your health care providers think might make your life better or more comfortable. Like all of us should.

People who oppose or who do not personally desire a cure are not just the people who have everything easy, who have no real problems. We want our medical issues and other challenges taken seriously.

We just think they’re a poor excuse for why people like us shouldn’t exist at all.

4.  But a true cure for autism (that doesn’t consist of eugenic abortion based on genetic profile) is not only something that we are nowhere even remotely close to achieving, but seems, to me at least, increasingly unlikely to be achievable in light of current research. Autism isn’t something located in one part of the brain. In the vast majority of cases, it’s not attributable to a single gene or even to a small number of genes, or to any discernible damage or definite pathology, but involves differences in how the brain matures over time and processes information in complex and subtle ways.

Serious attempts at a cure, to date, have tended to be ethical and human rights catastrophes.

5.  I don’t say that to make you hopeless. I say it to strongly suggest that you not wait for a very hypothetical future in which you might be able to turn yourself non-autistic in order to try to be happier. To find the things that make you happy or satisfied and follow those things wherever they lead. Because if you’ve put all of your hopes for joy or contentment with your life in the basket of a potential cure, then you’ve already made your decision in a way that is very unlikely to have the resolution you want.

6.  In any way and to any degree that you can, get out of bad or incompatible environments. They can really easily make you feel like the problem when you’re not.

When you have, for a really long time, been surrounded by people who make everything about you into a problem, or only ever been in environments that sent the message that everything you want but can’t have is because of autism, then it can be very, very difficult to tell the difference between artificial, arbitrary barriers, and obstacles actually imposed by autism itself. And those messages, those arbitrary, imposed barriers, are very, very prevalent in our society and in a lot of the ways that our families, teachers, healthcare professionals, potential employers, and other people who have a lot of power in our lives, are taught to see and treat autistic people.

Those things aren’t just natural, inevitable consequences of being autistic, and learning how to recognize and challenge them might not make you change your mind, but life can be a lot more livable.

7.  There are ways in which I think the neurodiversity community could do a lot better for all of us.

I think we need to have more room for people who don’t necessarily feel prideful or self-accepting, who feel ambivalently, who are still coming to terms with difficult or ambivalent personal histories.

I think we need more room for people to admit to struggling, both with acceptance and with the pragmatic realities of being autistic.

I think we need to remember that neurodiversity is about the conviction that autistic and other neurodivergent people are truly and wholly human, with everything that that entails, that our existence is natural and innate to human biodiversity, and that it would be wrong to try to eliminate autism and autistic traits from the fabric of humanity; and not about feeling 100% positive about our lives or identities at every given moment.

That’s not something that’s expected of typically-developing, non-disabled humans in order to justify their continued existence.

I also think there are compromises we rightfully will not make. That the neurodiversity movement for the most part does not engage or condone “Well, I don’t need a cure and people like you might not need a cure, but low-functioning people do” rhetoric is not because we don’t understand how disabling autism can be. Indeed, some of the pioneers of the neurodiversity movement were and are very significantly disabled people. It’s because we believe that autistic people are real and whole people, no matter the intensity of their disabilities or their support needs, and that all of us have a right to our own thoughts and feelings and decisions about our lives. That if we’re serious about honoring diversity, we don’t get to say “We’re okay and intrinsically valuable the way we are, but people like you aren’t.”

There are a lot of things we could do better to find common ground with autistic people whose goals and desires differ from our own. That we won’t do that isn’t one of them.

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.

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.

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