Friday, April 28, 2017

About That "Coming Avalanche" of Autistic Adults...

Greg Love
ageofneurodiversityblog.wordpress.com

wave coast
Waves in Santa Cruz, California. © Wonderlane, Creative Commons
[image: Ocean waves breaking on a rocky shore.]
It is currently autism “awareness” month, that time of year when autistic people are told that they are costly and burdensome, that they ruin families, and—even worse—that they’re growing in numbers (oh, the horror.) A petition has even circulated, since Donald Trump took over the White House, claiming autism must be declared a "public health emergency."

While these ideas remain disturbingly common, some parents are changing their tune, albeit unfortunately not in ways that actually diverge from “awareness.” Nowadays, parents and professionals are increasingly alarmed at the incoming “avalanche” of autistic adults who will be ill-prepared for the lack of services and supports after high school.

It is true that the world scarcely cares to accommodate the support needs of autistic adults—yet at the same time it can no longer just “disappear” those adults into institutions like it used to. We have the disability rights movement to thank for winning important reforms over the last several decades, mandating access to the same education options available to non-disabled people. Basic civil rights like non-discrimination in public and private institutions and services, in hiring, in residential facilities, etc., had to be demanded before what should be considered routine accommodations were mandated by law.

Many autistic adults require access to—and deserve—quality services and support to guarantee that their basic needs are met, and to allow for full inclusion into their communities. But those services and supports simply do not exist in most communities. And being fully aware of this problem does not justify using the bigoted language of “awareness” to scare everyone into action.

I have a question. It is a question seldom asked by the “autism community” of non-autistic parents and “experts.” Why do we have this scarcity of services and support for adults? I’m not exaggerating. This simple question is never adequately addressed, if it is asked at all. When it is asked by some parents and professionals, it is erroneously framed as being based around an assumption, that this state of affairs was always going to exist because the world has yet to catch up with the reality of the “epidemic” at their doorsteps.

On the contrary, this is what I see: there is no incoming “avalanche” of autistic adults. There is simply autistic adults who would have always been born, who would have always existed whether or not services and support were available to them.

This is what I see: an “autism industrial complex” that has emerged in recent decades, with its purpose being the development of “treatments,” and locating the source of autism, to possibly cure it.

This is what I see: in childhood, an overwhelming focus on Early Intervention, extending as far back as two years of age or earlier, with therapies that are justified on the basis of teaching “skills” but which frequently consist of behavioral modification, compliance-training, and normalization.

This is what I see: a tunnel-visioned focus on autism as a childhood disorder that erases any notion that these children will grow up into autistic adults, with decidedly adult needs.

This is what I do not see: any ability on the part of the “autism community” to connect the dots, so to speak. While this community of non-autistic parents and professionals stumbles to come up with answers to the oncoming “crisis” of autistic adults, autistic adults are already here and have a lot to say about it.

Perhaps we ought to start with the obvious question: why is it that you continually separate the way autistic children are treated and the way autistic adults are treated? These are not separable issues. Autistic children are treated as “fixable” or amenable to “recovery” with intensive Early Intervention as early as age two. The “autism community” says that they should be subjected to hours upon hours of therapy to reduce “problem behaviors” and learn “skills.” This community believes that the only hope for autistic people is through experimental social engineering therapy that seeks an unmistakable goal of autistic erasure.

How can the needs of autistic people across their lifespan ever be properly addressed when so much money and energy goes into erasing their neurology before they ever reach adulthood? Meeting the needs of autistic people across the duration of their lives is incompatible with seeing them grudgingly as human beings after they’ve been through years of therapy and behavior modification and—shocker!—came out autistic in the end anyway.

So is there really an “avalanche” of autistic adults coming? Parent of an adult autistic daughter Cindy Godwin believes so, and she also doesn’t hold back on the insulting, pathologizing, and fear-mongering language that usually accompanies “awareness”:
“As the number of autistic children grows, so does the number of autistic adults. Their needs remain much the same as they age, yet the support they once received fades. Though families like mine are feeling it most acutely, this is an issue for everyone to consider. The tsunami of adults with autism is coming.”
We’ve now graduated from an avalanche to an even scarier and more devastating “tsunami.” She prefaces her piece by reminding her audience that “autistic children never really grow up.” So what do we do with these children in adult bodies?

She describes the “scene” found at her daughter’s town home, because boundaries like privacy need not be observed when it comes to your autistic kids. Her daughter may be almost thirty years old, but her mother considers her too "feeble-minded" to have any concept of privacy, and describes her daughter's executive functioning disabilities as though the young woman is a human zoo exhibit displaying "the autistic adult in its natural environment," for millions of people to read:
“She’s sitting on the sofa playing video games. Dirty dishes are everywhere in the kitchen, pizza boxes and empty soda bottles cover the countertops, the trash is overflowing and stinks, the patio is littered with cigarette butts, laundry needing to be done is stuffed into black garbage bags. The notice of a certified letter, announcing that she has been dropped from her therapeutic art program for non-attendance, sits on top of a stack of unopened mail and unread handouts from her counselor. 
"This was the scene I walked in on recently. “She” is my 29-year-old daughter.”
This mom, who states she “suffers combat level stress daily,” along with hundreds of thousands of other parents, evidently equates executive functioning disabilities with immaturity. Remember, “autistic children never really grow up.” As an autistic adult with similar executive functioning disabilities, I find Godwin's description of her daughter beyond insulting, but also realize it is standard fare coming from the “awareness” community.

To be fair, not all parents are fixated on the standard impending crisis and tragedy narrative. Father of an autistic son Raquel Regalado published a recent short piece entitled Time for Autism Awareness to Grow Up.
“As the parent of an autistic teen I can attest to the old axiom, “little kids, little problems, big kids, big problems.” And while we appreciate the social and developmental gains our children have made, the older they get the harder it becomes to find services, programing and opportunities for them because funding and public opinion is fixated on early signs and intervention.”
He is absolutely correct when he says, “funding and public opinion is fixated on early signs and intervention.” Let me be clear: this must be the starting point for the divided autistic community and autism community to find common ground in discussing the needs of autistic adults.

But there is an alternative to seeing this as an “avalanche,” and there is certainly no justification for using dehumanizing and pathologizing language to describe a problem that no autistic adult had any part in creating.

Autistic adults do face a severe lack of services and support. But they also regularly face an “avalanche” of bigotry from non-autistic parents and experts, and even the President of the United States, plus anti-vaccine cure cultists, Early Intervention and ABA social engineering conversion therapists, and a highly influential international organization that makes a lot of money but has little intention of using it to address the most important needs of autistic people and their families.

But let us say that there is an avalanche of autistic adults. I welcome it. Because autistic adults are adults, not children in adult bodies, and the failure to meet their needs as adults creates a space for them to begin advocating for the services and support they need. And more than advocating, but demanding it.

Unlike so many other parents, I don’t see myself as the “voice” of my own autistic son. When he grows up, he grows up into an autistic adult, and no matter his communication challenges (he is non-verbal now, but he’s also three years old), he can learn to advocate for himself along with other autistic adults.

Autistic adults are only a “crisis” when autism itself is understood as a crisis. There is only an “avalanche” of autistic adults when autistic children are understood as an “epidemic.” Accepting autistic people as autistic people, and allowing them the same self-determination that every other person has a right to regardless of their support needs, will turn this bogus avalanche into a simple issue of human rights. Never again should any person, based on their different neurology and disability, be described in this way.

Accept autistic children as autistic children and there will not be an avalanche, only a need to make certain that autistic children grow up to be autistic adults with their adult needs met, and fully accommodated.

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A version of this essay was previously published at ageofneurodiversityblog.wordpress.com.

Wednesday, April 26, 2017

Elizabeth Bartmess Interviewed on autchat, Autistic Community, and Autism in Fiction

Elizabeth Bartmess runs the autistics-and-cousins autchat discussions on Twitter, and also writes and critiques autism-themed fiction. We talked with Bartmess about why autchat matters, sometimes in surprising ways, and also about why "'Autistic character learns empathy' is the character arc I most wish would go away."

image: photo of a white person with short light brown hair and glasses, smiling
Elizabeth Bartmess
[image: photo of a white person with short
light brown hair and glasses, smiling.]
Thinking Person's Guide to Autism: Tell us about autchat. What is it, exactly? 

Elizabeth Bartmess: Autchat is a Twitter hashtag by and for autistic people and "autistic cousins"—people who have similar experiences due to other disabilities like hydrocephalus, cerebral palsy, ADHD, etc. We welcome people whether they are formally diagnosed, self-diagnosed, or wondering whether they might be autistic or similar.

We have weekly hour-long chats on our experiences, with topics such as  accommodations, burnout, and sexuality. During a chat, the moderator asks 4-5 questions and participants answer them. We post the questions online ahead of time for people who need more time to think, and people can chime in with answers any time during the week. Outside of chats, people may also use the hashtag to ask questions or post information of interest. We save transcripts of the chats to our website, to help keep a record of our collective knowledge.

The chats are Sundays 4pm Eastern, and the website has information on how to participate. We ask people who are neither autistic nor autistic cousins to refrain from posting on the tag, but everyone is welcome to read along or to check out the archives.

TPGA: How did autchat come into being? Was it a collaboration or a solo project?

Bartmess: Autchat came out of the autistic community on Twitter in February 2015. I'd been on Twitter for about a year then, and had met a lot of other autistic people and been having great conversations with them. Twitter is a very ephemeral medium, though—you have a conversation, it scrolls off your timeline, and you stop thinking about it. And if it's just between you and someone else, people who don't follow both of you won't see the conversation on their timelines. So I asked whether other people would mind if we started tagging some of these conversations so other people could find them by searching for the tag.

A number of people were interested. We came up with the #autchat tag, decided to try weekly chats, and collaborated on planning. The primary people involved back then were me, @AskCisco (who had been thinking along similar lines), @Ask_anAspergirl, and @erabrand, who also did our website. For a while, Cisco also ran a second autchat session on Sundays, where we revisited previous topics.

We've now been running for over two years have have had over a hundred and sixty chats on more than eighty topics. Some other projects have also come out of people who either met through autchat or were involved in planning it, such as Autistic Flappy Hour, a podcast run by autchat co-founder @AskCisco and two other autchat regulars; and the #AutismMeans hashtag series, run by me, @FilmSpectrum, and @rsocialskills. @neurocouture, an autchat participant, has also run a number of Twitter chats on autistic burnout on the #AutBurnout tag.

TPGA: Can you tell us about some specific instances in which you've seen autchat make a difference in someone's life, or in which you've heard it helped a person through a tough spot?

Bartmess: Specific instances blur together in my mind because there have been so many of them! For some people, it's their first foray into autistic community. Many people have said it's helped them with self-understanding, self-acceptance, and coping skills. Other people have said it's helped them get through their diagnostic process, or help make sense of things after a diagnosis. I know many people make friends through the chats and develop a sense of belonging to a community. I've also seen people say autchat has helped widen their understanding of what it means to be autistic. There are also some good stories in this post that @AskCisco wrote about autchat's origins.

TPGA: What are some examples of autchat scenarios that surprised you, or widened your understanding of other autistic people's experiences?

Bartmess: I was surprised by how central stimming is for many people, both with respect to coping and with respect to social experiences and the need for acceptance. My own experiences have centered primarily on difficulty with social scripting and figuring out how to respond to social cues—not so much now but certainly up through my early thirties—and I thought that would be more universal than it was. I also wasn't expecting sensory issues to be as salient a feature of many people's experiences as they are.

Another thing that surprised me was experiences with gender and gender identity. Before becoming involved in Twitter's autistic community, and in autchat, I hadn't realized how common it was for autistic people to be trans and/or nonbinary, or gender non-conforming.

TPGA: Are there any autchat topics you haven't broached yet? If not, why?

Bartmess: I have a list of almost twenty topics that have been suggested that we haven't covered yet (two of which I've thought of while answering these questions!), so the most common reason to not cover topics is just that I haven't gotten around to them yet.

There are some topics I would particularly like to cover, but haven't attempted. The biggest one is chronic interpersonal trauma, specifically abuse and bullying. I write most of the questions for the the weekly chats, and I try to write them so that participants can come up with useful things to take away. I don't know how to do that for chronic interpersonal trauma, in part because what we need often doesn't exist. There's very little effective treatment for chronic trauma specifically, and the treatments that have been developed are not widely available and don't take into account autistic and similarly neurodivergent people's specific needs and vulnerabilities, even though we experience abuse and bullying at high rates.  My worry is that because what our community really needs—effective and widely available treatment and support—largely aren't available to us, we'll wind up at the same place we started from at the end of the chat, and possibly in more distress.

There are also some topics I would like to run where I don't have the relevant personal experience to write good questions. We've had topic requests for co-occurring conditions like eating disorders, personality disorders, plurality, and psychosis. I'd also like to have a chat on race and ethnicity and how that affects experiences of being autistic or similar. I've been looking for volunteers to do these for a while, but have not had any success yet.

I'd also like to have a chat on autistic cousins and autistic communities. Communities formed by autistic people can be quite strong and sometimes also insular. That can be hard on neurodivergent people who have a lot in common with autistic people, but who are not necessarily invited to autistic communities and activities and may not feel comfortable joining in even when they are. I haven't had that chat yet because autchat's participants are almost always autistic, and the chat would need to primarily involve autistic cousins speaking and autistic participants listening. I don't have the cross-community connections to network for that and am not very good at reaching out. (I am open to collaboration, though. If someone who is reading this is a disabled person who shares significant similarities in experience with autistic people and would like to develop a Twitter chat or chats on this, either for autchat or as a separate chat, DM the mod account on Twitter at @autchatmod or email autchatmod@gmail.com.)

TPGA: How do you think people who aren't themselves autistic can benefit from reading the autchat archives?

Bartmess: Some of the benefits for non-autistic people are the same as for autistic people: A better sense of autistic people's similarities to and differences from non-autistic people, and a better sense of autistic people's similarities to and differences from each other (as the saying goes, if you've met one autistic person, you've met one autistic person). Autistic cousins may get some of the same benefits that autistic people do, by seeing experiences they personally identify with, or ideas for new coping skills.

I think many people who read the archives, whether they are autistic or not, will be surprised by the range of topics and the many ways those issues affect our lives. For example, many people don't know that sleep difficulties, or differences in pain perception and expression, or difficulty eating, are common for autistic people, even if we know those are issues for ourselves personally, or for an autistic person we know. Popular representations of autism often focus on a limited number of topics, and have a narrow scope even for those topics.

TPGA: You are also a fiction writer, and a contributor to Disability in Kid Lit. What are some stereotypical autistic character arcs you wish would go away?

Bartmess: "Autistic character learns empathy" is the character arc I most wish would go away. There's a common and inaccurate belief that autistic people don't have empathy. While some autistic people do describe being lower in empathy than neurotypical people, it's very common for us to have painfully high levels of empathy. It sometimes looks like we have less empathy because we have difficulty intuiting how a given person wants us to express that empathy, and asking outright can sometimes make people angry. It's also hard to enact empathy when we're overstimulated or anxious or overwhelmed, and our energy is so taken up by the immediate situation that we have nothing left to give.

These are both situations where empathy and understanding from other people can help us get to a position where we can return that empathy and understanding. But it's common for us instead to hear that we're not empathic enough, and if we really cared about other people, we'd do what they want. Hearing that—whether in real life or in fiction—is frustrating, not just because it's inaccurate but because it means nobody gets what they what! And that belief—the belief that we lack empathy—is also sometimes used as justification for treating us badly.

Another character arc I would like to go away is one where we learn to "push through" or learn to tolerate things that, in real life, are either not good ideas for us to try to push through, or are not actually things it is possible for us to learn to tolerate. This is a variation on a larger theme where character growth is shown as becoming more neurotypical. That's depressing to read because, while autistic people continue to learn skills throughout our lifetimes, we don't become neurotypical; what looks like becoming more neurotypical / less autistic is often compliance with expectations that we act neurotypical regardless of the cost, and the cost can be very high.

A third character arc I'd like to go away is actually not a character arc at all—it's the absence of one, where an autistic secondary character is included in a story so that neurotypical characters can show they're good people, or included to provide conflict for other characters to work through (often in the form of being embarrassing to other characters in front of their friends).

When I wrote that article you linked to in the question I was thinking of things not to do—and I think if I wrote it again I'd focus more on arcs I would like to see, or like to see more of. (I still like that article and I'm glad I wrote it, but I wish I'd included more positive things.)

One thing I'm struck by in fiction is the rarity of autism-related arcs that are very common in real life. For example, realizing you are autistic, or being diagnosed, as a teen or adult, and re-evaluating your life in light of that. Fiction often shows us as already diagnosed (and in fact I can only think of one major exception in kid lit—Rogue, by Lynn Lachmann-Miller, an autistic author, although there are some books that never identify us as autistic at all).

Another real-life arc is joining autistic community; many books have one autistic person and that's it, although there are some great exceptions, especially by autistic authors. Other real-life arcs include learning to better advocate for your needs and improving your self-care skills, and learning coping skills for things that don't show up in fiction much, like autistic inertia and other aspects of executive dysfunction, or motor issues.

All of those arcs involve the opposite of becoming more neurotypical, and in real life they often involve becoming more visibly autistic. So they don't necessarily look like character growth to people who haven't lived them, or who aren't on close terms with people who have. But they're some of the most important and helpful character growth we can have.

And, of course, autistic people go through character growth that isn't specifically about being autistic, and I'd love to see more of those arcs, too.

TPGA: Who is your favorite autistic character in literature, and why? What resources would you recommend for people who want good portrayals of autistic characters?

My favorite autistic character is Oscar from Anne Ursu's middle grade book The Real Boy, for many reasons. He has domains of competence and difficulty, and he has adventures that are not specifically or exclusively about being autistic—while still being portrayed as autistic throughout—and winds up being a hero. The book is very good at portraying his internal experiences, and some of his difficulties with social cognition are quite close to ones I had when I was younger.

My favorite resources for good portrayals of autistic characters are Disability in Kid Lit (which includes reviews of both good and less good portrayals), and Ada Hoffman's Autistic Book Party, which has a stronger focus on fiction for adults, particularly science fiction and fantasy. It includes novels, as well as many recommended short stories that are available for free online.