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."
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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.
