September 8, 2020

The internet is not forever

Posted in Uncategorized tagged , , , , , at 8:00 pm by chavisory

“A few of the younger Symphony members…remembered the stories they’d been told about WiFi and the impossible-to-imagine Cloud, wondered if the internet might still be out there somehow, invisible pinpricks of light suspended in the air around them.” -Emily St. John Mandel, Station Eleven

A few years ago now, I was up very late, sipping bourbon, listening to the Cubs’ World Series-winning game, and trying to resurrect autistic community history from the dim corners of the internet.

And it was a frustrating and grueling experience. It was Autistic History Month, so founded by Maxfield Sparrow in 2013, and I think people had been realizing for a while that our community collective memory only went back about five years and that it was starting to be a serious vulnerability. (Honestly it still is.)

On one hand, it was certainly a good thing that so many people were being newly diagnosed as young adults, and sometimes as older ones, and deciding to be openly autistic online. On the other, there was no obvious way to direct this huge influx of people starving for community to the resources and information that did already exist, and so there was a whole lot of reinvention of the wheel going on. Neurodiversity.com, which had served that function for many of us who entered the community in the very early 2000’s, was already an inactive archive by that point, and while the references it contained were progressive for the time in which it was founded, many were out of date even just a decade later.

Twice I queried social media for people’s favorite “older” autistic blog or writing, defining “older” as being from before 2010.

Both times, nobody could name a source that wasn’t Neurodiversity.com, Ballastexistenz, or something by Jim Sinclair. And not to denigrate the importance of those voices, but there was so much more than that.

A friend posted a list of a dozen important autistic writers and activists from the early days after the neurodiversity movement moved online in the late 1990’s and early 2000’s, and asked how many of them other people recognized. I knew who six were.

Multiple, currently prominent activists knew of none of them.

I’m using the autistic community as an example a lot in this post, but this isn’t exclusively about autism or the autistic community; that’s just where I’ve been consistently involved enough to notice and be affected by long-term dynamics. I suspect similar issues may be at play in other internet-centric communities.

*

One thing I feel has happened—and this may well be the subject of a whole other post—is that many people, especially if they’re relatively new to the community, are under the impression that autistic Twitter is effectively the online autistic community. And it’s not. Not only is it not, even now, but before Twitter was anywhere near as big a platform, before it was a thing at all, the character of the online autistic community was entirely different.

It’s different for both better and worse. The easily discoverable hashtags #ActuallyAutistic and #AskingAutistics make it incredibly easy for newbies to find other autistic people on Twitter and where to ask questions. It used to be harder, or you had to be extraordinarily lucky, to stumble upon the blogs that served as cornerstones of the community. Even while there are a lot of things I don’t like about it as much, the character and quality of conversations on Twitter are probably more accessible for some people. (And less so for others.)

The point, though, is that it’s fundamentally different.

*

I’m an Oregon Trail generation kid. Almost anyone my age or younger has almost certainly been lectured ad infinitum about how “The internet is forever” in well-intended warnings about being cautious in what we say and do online.

But the older I get, the more I find the internet is actually surprisingly vulnerable to human frailty.

There is so much writing that is just gone. So much community, so many of the best, most constructive and compassionate conversations happened in the comments sections of blogs that have been taken down or locked by their owners. Not just the content of those blogs, but the entire culture of the way people formed relationships around them, is gone or radically altered.

Servers are gone. People stopped being able to pay for web hosting. Or got tied up in life, illness, parenting, or more offline activism or scholarship and don’t have time to maintain archives and keep links updated. Neurodiversity.com is still there as an archive, but about half its links are broken. (I’m not saying this to blame Kathleen. Life happens.)

People died. Friendships imploded. People got burned out and simply disappeared off the internet, and unless there was an active effort to preserve and archive it, their work often followed a few years after, if only because they stopped paying for their web domain.

Some of that world made it into the Wayback Machine if you know exactly how to look for it, but a lot of it didn’t.

*

For a couple of years before I started this blog, I was a frequent commenter at Salon.com. I was doing a lot of temp work at the time and it was a way to pass the 9-hour days stuck at a reception desk. Debates in which every single comment was a worthwhile essay unto itself, frequently superior to the original article, would wind on for days. I easily spent hundreds of thousands of words there and God alone knows how many hours of my life. And I don’t regret it; I learned a lot about the kind of blogging I wanted to do there. But I had pretty significantly curtailed the time I spent there by midway through 2010, partly because I had just grown not to enjoy what the culture there had become, partly because I was deliberately spending my time here instead, having realized that with the amount of effortful writing I did there, I could have something of my own to show for it. But at some point Salon revamped their account and comment section structures. I didn’t sign up for a new account or I might’ve tried but found it onerous and before long I was locked out of my old one. And I lost access to all of it.

Then WordPress itself a few years ago either suffered a glitch or changed a setting—I never succeeded in getting an answer—and users lost all of the data about how many times posts had been shared on other platforms like Facebook.

One post of mine had been shared over 20,000 times. The counters were eventually reset, and that post logged another 8,000 shares or so before the counter disappeared again and stayed gone this time.

I have no idea whether WordPress lost the data, or still has it but decided to stop providing it to users without premium accounts.

More recently, Tumblr attempted to purge its platform of adult content [Content note: Linked story contains discussion of sexually explicit material, including child pornography] in an event popularly known as the “Tiddy Ban.” Many erotica-focused blogs were removed entirely, others were allowed to remain but were made unsearchable and dashboard-accessible only. And countless other users had individual offending posts removed from our blog archives utterly without recourse. Over the ensuing months, many of the confiscated posts were restored upon appeal, having been judged to have been wrongfully snared by deeply faulted screening algorithms.

But one of my posts, to which I have never been able to regain access (despite several other much sexier posts having been returned), was a long and multi-layered discussion of executive dysfunction and diagnostic disparities among autistic women and the politics of self-diagnosis.

Whether because the author of the article I linked to works as a stripper and said so in her bio, or because the preview image for the article depicts the bare knee of a young woman sitting on a bed, I’ll probably never know. I’ve protested multiple times to Tumblr staff, but at this point don’t hold out much hope of getting it back. It had over 1,000 notes in multiple reblog threads.

People who’ve lost work in previous fandom purges have similar and far, far worse stories.

*

I’ve been rewatching the X-Files over the past couple of years. And it’s a different experience than it was during the original run. At least partly because, watching with subtitles turned on, I catch at least 50% more information from dialogue than I did then. But also because watching episodes in close time proximity instead of spaced out week by week, or multiple weeks during holidays and production breaks, or months during the summer, or years, like between the end of the original series and the second movie and the revival, brings out whole different sets of resonances and parallels and sneakily revealed information than what was obvious the first time through.

And I have so many questions about whether anyone else has noticed them, or wants more back story about the same things I do, and while there are XF communities on Tumblr and Twitter now, they’re hugely dominated by younger, newer viewers and overwhelmingly MSR-obsessed (which is not a sin, obviously, and I’m also starting to find exceptions to this) and gifset-driven. There’s not a ton of in-depth discussion of other issues. I was a dedicated lurker of the AOL message boards circa 1994-1998, and what I’d really like is to go back to some of the boards I didn’t follow then and see if these were in fact things that people were talking about at the time even if they weren’t the things I was seeking out discussion about then. Those boards are lost to history, though, or at least to anyone without deep access to AOL’s servers and archives.

To some extent you can tell from the fanfic of the time what other fans were preoccupied by—Gossamer and a couple other archives of long-form fic are still there. But as far as speculation about any subject that didn’t make it into a lot of fanfic, those discussions, if any, have been made completely inaccessible to any average present-day fan.

I can’t tell you the number of posts or comments important to me that I thought were safe in my bookmarks, only to try to go back and find a blog taken down or locked or a domain abandoned.

In a couple of cases, authors have been kind enough to send me files to keep for myself of work they decided to take offline. But I’ve started just downloading or printing out hard copies of anything particularly important to me before it disappears in the first place.

Growing up when the internet was a brand new and barely understood resource to most families, we were told “The internet is forever” in caution against revealing personal information online by elders who mostly didn’t understand it very well or how it would change over time, and now we’re the ones telling parents, and especially parents of disabled kids, the same thing when it comes to putting photos or information about their children online.

And I don’t want to undermine the seriousness of the risk of just how unpredictable and wide-ranging the impact of personal information or depictions of children in private and vulnerable moments released on the internet can be. I deeply believe that parents should think twice about this.

But the irony is that in too earnestly believing certain warnings about the internet, we’ve grown to trust it too much. In some ways, the internet, far from being forever, has actually proven a remarkably poor medium for preserving cultural memory.

It turns out that the cultural resources and internet communities we value and want preserved don’t just last without attention and work and love.

July 18, 2020

What if we really are this queer?

Posted in Uncategorized tagged , , , , , at 3:11 pm by chavisory

A research study on sexual orientation among autistic people, actually published a couple of years ago but recently making the rounds of social media, has found that just under 70% of autistic respondents identified as non-heterosexual, whether they be LGBTQ+, or on the asexual spectrum, or both. While this may sound like an incredibly high number, it roughly accords with both anecdotal accounts from within the autistic community over the years, and my own (very rough) estimates of what might be the case, loosely extrapolated from earlier studies on the rate of transgender identification and gender non-conformity among autistic youth tending to find rates seven to eight times higher than among non-autistic teens.

While the underlying reasons for these results is not yet well-understood, a very common response to them is that rates of non-heterosexuality are probably actually similar in the non-autistic population, but that autistic people are simply more honest, or are less impacted by heteronormative socialization, care less about social disapproval, or do not pick up on social messages of disapproval around gender and sexuality like non-autistic people do.

I both find these explanations unconvincing, and think we should be very cautious of embracing them, for several reasons.

1. There is ample evidence that autistic people are perfectly capable of perceiving negative messaging from our social environments. No, we don’t necessarily do it as well or in the same ways as non-autistic people. But autistic adults have written endlessly about picking up anti-autistic and ableist messaging from our environments and internalizing those attitudes. Even if no one giving us these messages even knew what autism was, we readily picked up on the fact that it wasn’t considered okay to be the way we were. We frequently realized that people didn’t like us or considered us weird even when parents and other adults explicitly denied that was the case. We learned to suppress stimming and how to fake eye contact in many cases without even being explicitly told to.

And compared to anti-autistic messaging, homophobic messaging in our society during the time many of us were growing up was very, very overt. In many places, it still is.

The controversy over Ellen’s coming out (and that it nearly ended her television career), the murder of Matthew Shepherd, the nasty comments made about teachers suspected of being lesbians, the fact that “gay” was one of the more common insults available…these were features of my early teen years.

Believe me, I did not miss the memo that it was considered wrong and looked down upon to be gay or bisexual when I was growing up (there was much less mainstream recognition of asexuality, let alone asexual spectrum orientations like demisexuality). It was not especially subtle. I don’t know how much people realize this who didn’t grow up in proximity to evangelical Christianity (which my family did not follow, but its cultural presence was hard to miss), or in socially conservative parts of the country, or during the culture wars of the 1990’s, but it did not go unspoken. It was not subtle.

Hannah Gadsby said in a recent interview, “If I could’ve been more feminine, I would’ve been. Where I grew up, that would’ve made my life a whole lot easier.” I probably would’ve, too, if I’d known how. I didn’t know how. I couldn’t meet those expectations; I didn’t just not understand they existed.

Which isn’t to say that ableism isn’t often spoken aloud, or that subtle manifestations of homophobia can’t be harmful.

But I think there’s a particular danger of this narrative, too, to autistic youth in parts of the country where homophobic and transphobic messaging is still very overt, that it doesn’t matter as much what they hear because they won’t absorb or be as affected by it.

Because we know that autistic youth absorb and are profoundly affected by ableist and anti-autistic messages even when they are relatively subtle.

Why would queer autistic youth not be by homophobic ones?

2. I don’t think most people are being fundamentally dishonest about their most visceral experiences of attraction and desire, and I do not think making this assumption sets a good precedent.

I’ve written about this before, but I just don’t think that our media environment is pervaded with assumptions about how sexuality works for most people….because they’re actually all lying about it and this relatively small fraction of us (most of whom are not autistic) are the only ones who didn’t get the message that we were supposed to.

I don’t think that generations of queer people have been met with shock, rage, and confusion upon coming out to their families, that a shocking percentage of kids living on the street are queer because they were kicked out of their homes for it, or that the existence of an organization like PFLAG was necessitated to help straight parents come to understand and accept their gay kids, if nearly everyone really was queer and just denying it.

We don’t like being told that we’re not capable of knowing our own minds. We don’t like it for good reasons. We object when people tell autistic trans youth that they’ve just been brainwashed into thinking they’re trans and deny them gender-related healthcare. Or self-identified autistic people that they only think that because they’re quirky or awkward and autism is an internet fad.

“You only think you’re what you say you are because that’s what society told you” is not a rhetorical stance I think we should be adopting.

People have a right to self-identify and by and large I think we should believe them.

I also don’t think we should present identifying one way or another as more honest or virtuous, or imply that someone who says they’re straight is categorically more likely to be lying.

Someone’s professed orientation should not be a moral issue and we should not make it one.

3. Differential interpretation of available data is not necessarily dishonesty.

Both the beauty and the horror of the human mind, I was saying to a friend recently, is that it’s capable of assembling data into narrative in a basically infinite number of ways. We often like to believe that if other people had the same information we do, they would draw the same conclusions or the same logical consistencies from it, but that is often not true at all.

Many people, for instance, believe that if only I knew what they knew about how some people are affected by autism—that some autistic people are intellectually disabled, or can’t speak, or self-injure, or need intensive help with activities of daily living—that I would be in favor of curing or preventing autism, at least in some cases. But I do know those things, and I still don’t agree. The fact that we have access to the same information but draw different conclusions from it doesn’t mean any of us is being dishonest or disingenuous or only saying what we’re saying out of fear of disapproval, rather than that we see that information differently, interpret it differently, and genuinely disagree about the best possible course of action based on that information.

Likewise, among the populations peripheral to the autistic community–the people we refer to as autistic cousins, as belonging to the Broad Autism Phenotype, or simply as neurodivergent but without being able to categorize someone exactly and definitively as belonging to a specific diagnostic category, there probably are people who could in all honestly identify as autistic, but who don’t, for a variety of reasons. Some may really just be in denial. Some may not be ready in their own minds to identify as autistic yet, but will eventually. Some never will because they don’t feel the weight of their experience justifies it. They may be right or they may be wrong but the rest of us generally take them at their word as far as their own experiences.

Conversely, within the LGBTQ+ community, we recognize that though in many cases, the terms “bisexual” and “pansexual,” among others, may be being used by different people to describe extremely similar patterns of attraction, there are subtle distinctions between them which are meaningful to some people but not others. (I somewhat suspect that the same may be true for the categories of “demisexual” and “gray-ace.”)

mr buress with a psa
[Image is a meme of comedian Hannibal Buress, a black man in glasses, depicted with four multicolored emblems representing the pride flags of bisexuality, omnisexuality, pansexuality, and polysexuality. It is captioned to read “These broadly overlap but the distinction matters to some people and that’s okay.”]

One thing we do know is that autistic people prioritize information differently than non-autistic people, that we tend to show a bias for specific, localized information over broad, generalized information.

And so one thing I think may be happening, not even just between autistic and non-autistic people, is that some fraction of people may experience incidental same-sex or same-gender attractions, but not as significant enough in the grand scheme of things, in their overall pattern of attraction, to identify as queer or bisexual rather than straight. While another person, for a hundred different possible reasons, including but not limited to an information-processing style that prioritizes specific over generalized information, may experience or interpret those attractions as meaningful enough to identify as bisexual or queer.

Neither of these people is necessarily being dishonest or hiding the truth from themselves, rather than assembling information in a way that feels most meaningful to them.

I think that’s something we should actually honor, rather than suggesting that they’re either brainwashed or too fearful to be true to themselves.

It probably is the case that more people are queer than currently self-identify as such, because internalized homophobia does exist, and because we live in a society that in so many ways can make it hard to find good, non-judgmental information about the real variety of experiences and identities that exist in the world, much as it is the case that autism is likely still under-diagnosed, because of a whole range of prejudices and lack of accurate information made available to families, and yet it is not the case that “Everyone’s really on the spectrum somewhere!”

And like the “Everyone’s a little autistic!” line, which we rightly hear as a dismissal, it hamstrings the ability of queer people to talk about actually being different from the majority in important ways.

Just like I don’t believe that so many autistic youth go through our childhoods feeling lonely and alienated to the point of deciding that we’re not really human at all because we really are just like everyone else, I do not believe that so many queer youth go through our early lives feeling alone and ashamed because a stunning majority of our peers really are just like us, but that we alone (including non-autistic queer people) just didn’t get the memo that we’re not supposed to be that way.

4. If we really are more queer on average than the non-autistic population, why would that be wrong?

Why would that be undesirable?

Why do we even feel the need to reach immediately for this explanation that “Oh no, we’re not really more likely be queer, we’re just more honest about it?”

So what if we were?

Why would it even be implausible? We don’t know that much about how exactly sexual orientation originates to begin with, but like autism (in most cases), it doesn’t seem to be the result of one “gay gene” or “straight gene,” but rather a complex interplay of many factors, both genetic and environmental. The affirmative declaration of the gay community for years and years was “Born this way,” and while there’s been some backlash to that in recent years—that it shouldn’t matter whether people are born queer or choose to be, our mistreatment on that basis is still wrong—progressive society now tends to accept sexuality as innate enough so as to make it not just wrong, and harmful, but probably useless, to try to change or cure it.

The same is (slowly) coming to be considered true of autism. That yes, while it poses certain challenges and often requires particular supports, there’s nothing inherently wrong with it.

We also know that autism is highly correlated with other complex conditions, for reasons we don’t totally understand, that are definitely physiological and not a matter of personal interpretation of experiences, like Ehlers-Danlos Syndrome and epilepsy. There’s also a whole raft of more nebulous conditions like alexithymia and prosopagnosia whose precise relationship to autism (whether they’re “genetic stowaways,” or result from the inherent neurological differences that comprise autism, or are downstream consequences of those processing differences) is still unclear.

When discussing those conditions, we don’t tend to say “But probably they occur in non-autistic people at similar rates. We’re just more honest about it because we’re not affected by social pressures the same way.” At least not that I have ever heard.

Why when it comes to gender variance or sexuality do we reflexively feel the need to attribute some higher virtue to our identification, or emphasize that it’s not really that more of us are? When we don’t do that with regard to other aspects of identity or disposition whose relationships to autism we don’t really understand yet?

Why could it not be the case that some aspect of autistic neurology or development gives rise to a higher rate of non-heterosexuality than more typical neurology or development does?

What would be wrong with that if it did?

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!

May 14, 2020

Elsewhere

Posted in Uncategorized tagged , , at 9:52 am by chavisory

Hi all!

Just wanted to let people know if you’re interested that I have two pieces out in other places this week. First, in issue #2 of “Fuckit: A Zine,” a short musing on prayer and Call the Midwife. It’s available here.

And second, I have a new post, “Why Doesn’t Respect For Communication Diversity Include Non-Speaking Autistic People?” at the Thinking Person’s Guide to Autism, here!

I hope everyone is holding up okay and getting to enjoy spring at least a little bit!

 

April 14, 2020

In thanks for the legacy of Mel Baggs

Posted in Uncategorized tagged , , , , at 12:59 pm by chavisory

As much of the autism and disability rights communities have heard by now, writer and activist Mel Baggs passed away suddenly over the weekend, after years of complicated health issues as well as medical neglect and denial of sufficient home and community-based services.

While Mel was multiply disabled and often emphasized that sie felt more solidarity with the developmentally disabled community more broadly than sie did as simply autistic, sie also wrote the very first thing I remember, specifically about autism, that made me see myself. I remember sitting on the floor of my bedroom in my last apartment in Athens, GA and feeling my world kind of turn inside out as I read words that could’ve just been written about me. I was 21. So while it’s not as if I’d known hir all my life, Mel was inherently part of the world as I knew it, in which I knew myself in important ways.

Mel was, in ways, much more intensively disabled and had much higher support needs than mine. Sie could not speak, most of the time. Sie didn’t live independently. Sie had been institutionalized. Sie wrote about times when people looked at hir and assumed that sie could not think, or had the mind of an infant.

And sie wrote in a way that made me see myself in the world more vividly than almost anyone else would for a very long time.

So when people say things like “We aren’t talking about autistic people like you” when they talk about the autistic people they are sure need to be cured, prevented, controlled, institutionalized, or who they assume “just can’t communicate,” think, understand, or learn, Mel is one of the foremost reasons why I know they are wrong. That they are talking about autistic people like me, and that neurodiversity, presumption of competence, disability rights, and human rights, are for all of us. Every single one.

Mel was like me. And I am like Mel. Not in every way, but in important ways.

I didn’t know Mel personally but had the honor once of editing hir work. My mother said “So you felt like you knew her,” but really, it’s more like my entire generation of autistic people felt like we knew ourselves because of hir.

If you’ve never seen Mel’s video “In My Language,” it was truly a groundbreaking piece of media not just about autism, but about the sheer diversity of human thought and language and possibility of communion with the world.

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 27, 2019

I identify as tired

Posted in Uncategorized tagged , , at 9:03 pm by chavisory

I started wondering something explicitly for the first time recently, and that is: How many autistic kids who fly under the radar for years, or forever, present primarily to non-autistic observers as exhausted?

I wonder this as I continue recovering from a recent production, and my main problem is just that I’m so exhausted. If I get up at 10:00 AM, I need a nap by 4:00 or 5:00, and not for having done all that much in my waking hours. Every time somebody has made me exercise the slightest amount of planning ability outside of work, I just want to cry. It’s taken my writing brain a couple of months to even think about coming back online. And transitions are still the worst.

But mostly I’m just so tired.

And I look back on being a kid and obviously there was so much that I just had no frame of reference to explain, but one of the things that was apparent, even to me, even when I was really little, was that other people didn’t think I should be so tired. In grade school I was too tired to talk to a friend on the bus ride home instead of just staring out the window at the sunlight flickering in the trees. In middle and high school (on the afternoons I got to come home), I needed a two-hour nap before I could regroup and start thinking about dinner and homework, and people just didn’t believe I was too thrashed from a day of school to do much of anything else before that happened.

While there were things that I couldn’t do at all and had no way to justify why, a fair amount of the time, it wasn’t that I just flatly couldn’t. It was that I could do what was demanded by school or social activities, or at least perform a superficial but apparently somewhat convincing pantomime thereof, for a sharply limited amount of time, and it took absolutely everything out of me to function that way until I couldn’t anymore, and then people didn’t understand why I couldn’t anymore.

And sometimes it was actually that something more specific was the real problem, like having trouble transitioning, or not having the verbal bandwidth or social knowledge, or having motor planning trouble. But I didn’t have words for any of that, and the closest approximation I had available was often “I’m too tired.”

“Why?”

“I don’t know.”

I mean, I didn’t.

I’m more embarrassed of it now than I was when I just didn’t know that I shouldn’t be that tired, and what the reason was. It’s one of the probably top three things I feel like I have to hide in terms of being autistic and doing what I do for a living.

That me sitting here having a conversation in a way that reads as baseline normal to you is so high-energy that I’m going to start to break down from it in about half the time as you and have to go home and collapse. That to you that’s just how humans work and to me it’s like performing an extremely high-level game of mental and physical coordination.

That there are a lot of things I’d like to accomplish but I flatly don’t have the energy.

That when people suggest I do things like ~go to grad school~ or ~run for office~ it is hard to admit “Okay, do you know how much of my available energy I am currently using just to hold my life together and meet my obligations to the extent that I am right now?”

All of it. It’s all of it. I’m not just skating here.

And that’s not even from masking or passing or pretending not to be autistic. That’s just getting the stuff done that I have to get done. The cost of masking is above my price point.

That what you are talking about is so far beyond my capacity to think in extremely abstract ways and be on the hook to communicate about for that much of the day and do high-level strategic planning/networking and also do the work of holding my life together. And also write papers?!

Why don’t I run for office? Why don’t I teach college? Because I can’t actually speak for more than about two cumulative hours per day, and it helps if even all of that time isn’t consecutive; why don’t you become an astronaut if that’s what you really want? Oh, what’s that? You don’t have the resources, either internal or external, to go back to school for a terminal degree in math or physics or astronomy followed by years and years of physical conditioning?

Okay. That’s close to the energy differential we’re talking about here.

“Twice exceptionality: When your test scores write checks your actual abilities can’t cash,” is how a friend put it once.

There’s a presentation of autistic reaction to unmanageable demands that gets called Pathological Demand Avoidance… and while I have a lot of problems with how that’s framed, I think it may be “real” insofar as being a recognizable pattern of coping strategy in the form of exhibiting disproportionate, preemptive or protective defiance to what seem like normal, commonplace demands to a non-disabled adult.

I think there might be another one in which autistic kids, whatever they’re feeling, try and try and try and try and try to meet adult demands to the point where they wear themselves out trying, or get fed up with the Kafkaesque paradox wherein no matter how well they manage, the outcome is even heavier demand on their limited abilities to manage.

Anyway, I wonder…in light of admittedly anecdotal personal experience, how many autistic kids—not that they don’t show other signs, but which might be misattributed or considered “quirks” or misbehavior—how many kids primarily have it noticed that they are so frequently so tired, and there’s not an obvious physical reason why?

To the next person who says to me “How are you really disabled?” or “I don’t see how you’re autistic,” I’m going to be hard-pressed not to reply “I am so goddamned tired.”

tiredHannah Gadsby, another autistic performing artist who is tired.

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