“Held Tongue,” a poem about fearing the impact of one’s own words, is free to read now on Patreon.
Patreon backers get to see these poems early, and at high levels, even commission their own poetry. Check it out and enjoy!
“Held Tongue,” a poem about fearing the impact of one’s own words, is free to read now on Patreon.
Patreon backers get to see these poems early, and at high levels, even commission their own poetry. Check it out and enjoy!
Are you excited for THE OUTSIDE? Are you impatient to start reading? Then I have good news, because Angry Robot just released its INCOMING! sampler with free previews of all its upcoming 2019 novels, including mine!
INCOMING! contains the first three chapters of THE OUTSIDE, in which you’ll meet Yasira – my #ownvoices autistic protagonist – her adorable girlfriend Tiv, the space station where she is working, a priest conducting a service in honor of the AI gods, some harrowing space station malfunctions, and two rather sinister angels.
This is the first time anywhere that these chapters have been available to read. I am SO PUMPED to be able to share them with you now!
INCOMING! also contains free previews of Wesley Chu’s alien sci-fi THE FALL OF IO; Darius Hinks’ epic fantasy THE INGENIOUS; Dan Moren’s galactic spy thriller THE BAYERN AGENDA; Kameron Hurley’s military sci-fi THE LIGHT BRIGADE; and Anna Kashina’s epic fantasy SHADOWBLADE. Go get ’em!
Elizabeth Bartmess is the editor of the Autistic Self-Advocacy Network’s new anthology, “Knowing Why: Adult-Diagnosed Autistic People on Life and Autism.” The anthology looks great, and I was delighted to be able to sit down with Elizabeth for this interview.
Ada: What inspired you to put together an anthology of essays by adult-diagnosed autistic people?
Elizabeth: The Autistic Self Advocacy Network contacted me, actually. I had been organizing collaborative Twitter hashtags, including #AutChat (which I’m still doing) and the #AutismMeans hashtag series. Ari Ne’eman (ASAN’s president at the time) was interested in a nonfiction anthology with personal narratives by adult-diagnosed/adult-self-diagnosed autistic people, aimed primarily at an autistic audience. I’m adult-diagnosed myself, and I’d connected with various autistic people on Twitter, many also adult-diagnosed or self-diagnosed. It was very rewarding to see similarities and differences in our experiences. The anthology offered an opportunity to extend that into writing and editing.
Ada: Nine different adult-diagnosed autistic people contributed to this anthology. When you look at the life experiences of adult-diagnosed autistic people, do you find that they are more similar or more different? What would you say is the most common thing that adult-diagnosed autistic people experience, and what is the biggest factor making our life experiences differ? Are there any demographics or intersections that you wish you’d been able to include more of?
Elizabeth: Adult-diagnosed/self-diagnosed people have many meaningful similarities, and many meaningful differences. To list just a few common traits and experiences: sensory sensitivities, burnout, stimming, special interests, the need to self-advocate. There are many more, but not everyone has all of them. If you take any two random autistic people, adult-diagnosed/self-diagnosed or otherwise, they could have a huge number of things in common with each other, or almost nothing in common beyond the general categories of traits required for a diagnosis—or, more likely, some similarities and some differences. (I mention this because many adult-diagnosed/self-diagnosed people are especially sensitive to information that indicates that we don’t belong or aren’t welcome or aren’t really autistic, and so there’s always a risk when talking about shared experiences that someone who doesn’t share particular commonalities will begin doubting they’re autistic.)
I don’t think I could say which we have more of overall, but I think our similarities are the reason it’s valuable to come together, discuss our experiences, do advocacy, or just hang out—with each other, with earlier-diagnosed autistic people, with undiagnosed and questioning autistic people, with people who aren’t autistic but share significant traits and life experiences due to some other disability, and with other disabled people more generally.
Knowing about our differences is essential, though. That helps us make spaces and priorities more inclusive both demographically and in terms of other life experiences. It also brings competing access needs into the open, so we can come up with ways to address them, whether in the same space or by creating separate spaces.
For adult-diagnosed/self-diagnosed autistic people in particular, I think the most common shared experience is revelation. There’s a very common process of making sense of your life that happens after learning you’re autistic. Learning something core about yourself, something that pervasively affects how you experience the world, is a big deal when you’ve gone through so much of your life not knowing about it. Revelation doesn’t always happen in the same way; for some people it’s right after learning they’re autistic, for some people it takes longer, and for some people it doesn’t happen at all. But most people who learn they’re autistic have some helpful revelations, and for many people it’s life-changing.
The biggest factor making our life experiences differ: so many things can make big differences! So I’ll just answer with respect to the process of revelation I mentioned above: the biggest factor is getting accurate and relevant information on autism, and that typically means information accumulated from other autistic people. I say “accumulated” because one autistic person’s experience can differ greatly from another’s, no single autistic person is an expert on everything about autism, and all of us have believed some inaccurate information (and all of us have incomplete information). And of course you don’t have to be autistic to know accurate things about autism. But access to autistic people’s collective knowledge makes a big difference.
Related to that, you asked about demographics or intersections I wish I’d been able to include more of. Many! I don’t think it’s possible to be comprehensive in one anthology, or in one list, but there are a couple demographics I wanted to have authors from, and tried to get, but it didn’t work out: intellectually disabled autistic people who were correctly diagnosed with intellectual disability as kids but whose autism went undiagnosed until they were an adult, and autistic people in their sixties or seventies or older.
Ada: Many of the stories in this book are about difficult experiences – depression, discrimination, burnout. If you could change one thing about the world to make it easier for autistic adults, what would it be?
Elizabeth: Universal basic income, or some way that autistic adults can easily access housing, food, and healthcare without gatekeeping (including without a formal diagnosis), and without punitive bureaucracy. Autistic adults have high rates of unemployment, poverty and homelessness, fewer social resources to draw on, and more difficulty navigating paperwork and requirements (often due to executive dysfunction). It’s easier to cope, self-advocate, get your needs met, and do fulfilling things when you’re not struggling to survive, at risk of losing needed resources, and/or dealing with the effects of stress, fear, masking, sensory overload, unrealistic social demands, in interpersonal situations you can’t leave for financial reasons, etc. A minority of autistic people work, and some work in jobs that pay enough to support them and have job requirements or adequate accommodations and understanding co-workers. But most of us don’t.
Ada: Western culture seems to have grown more and more fascinated with autism in recent years, but that fascination often comes with misinformation or fear. How have media and cultural narratives about autism affected the way that autistic adults without a diagnosis see themselves?
Elizabeth: Media and cultural narratives are often created by non-autistic people who describe and define us based on their own experiences of being a non-autistic person who’s interacted with autistic people (or sometimes just read descriptions of autistic people by non-autistic people). There are accurate portrayals, often created by autistic people, but those don’t get as much exposure. So the ones that take up the most space in mainstream Western culture often aren’t accurate.
Autistic people don’t always express ourselves in the same way neurotypical people do—our emotional expressions might differ, or our body language, or our spoken or written communication. We’re also pressured heavily to mask: to suppress autistic characteristics and simulate more neurotypical ones, even though it’s effortful and does long-term damage. Not everyone can mask, but people who can are frequently doing it to some degree in some or most situations. People who don’t understand how our expressions differ or how masking works misinterpret us and portray our experiences in inaccurate or incomplete ways. Sometimes they don’t portray us as having experiences at all.
When portrayals of autistic people suggest our internal experiences don’t exist or don’t matter or aren’t as meaningful as those of our family members, or suggest we’re not disabled but merely quirky, we don’t see ourselves. And of course most of us are not (to give a couple common stereotypes) white cishet male detectives/programmers/scientist abrasive jerks, or nonverbal white boys with violent meltdowns (and those of us who either of those are still have meaningful internal experiences and are still disabled!).
I think the main effect of inaccurate portrayals is to make autistic people think they’re not autistic. When we see realistic media and cultural narratives, those generally include a wide array of demographics, and internal experiences: sensory overstimulation, burnout, trying to decipher a confusing and sometimes hostile social world, attempts we make at communication that are misunderstood or rejected, as well as good things—sensory enjoyment, experiences of stimming, special interests, connecting with each other. There are good media and cultural representations out there, and I’ve seen more in recent years, especially on women and female-presenting kids and adults, and on non-cis autistic people, and nonwhite autistic people (and people who are more than one of the above). But they aren’t yet being given the share of public attention that they deserve.
Ada: What’s one thing that autistic people who were diagnosed as children – especially very young children – often don’t “get” about adult-diagnosed autistics? Do you find that both groups are equally included in autistic culture?
Elizabeth: The autistic spaces I’ve been in all include adult-diagnosed people (if they didn’t, I wouldn’t be there!) and have (less consistently, unfortunately) include self-diagnosed and questioning people, and the autistic culture(s) they draw on and contribute to generally do too. If anything, the spaces I’ve been in have more adult-diagnosed/self-diagnosed people and overrepresent our interests (and since I’ve been the primary organizer of the space I’ve been most present in—Twitter’s weekly #AutChat chats—some of that’s my fault; I try not to bias the chats too much toward my own interests, partly by taking topic requests from attendees and inviting them to write questions, but I also fill in topics and questions where needed, and those are inevitably more focused on things I know something about). There are also a lot of spaces I’m not in, especially in-person spaces, blogging scenes, and Facebook groups.
I don’t have a strong sense of what child-diagnosed autistic people don’t connect with about adult-diagnosed/self-diagnosed autistic people. I do think a higher proportion of younger-diagnosed autistic people are puzzled by the extent to which we often find autistic identity positive and useful. Child-diagnosed autistic people are more likely to have authority figures and peers use an autism diagnosis to justify mistreatment, sometimes including harmful therapies like ABA or quack “cures.” Undiagnosed autistic kids are still mistreated for having autistic traits, but other people don’t attribute it to being autistic. We also don’t have access to accommodations or support, and we don’t have a diagnosis to help frame out experiences. When we learn we’re autistic we’re more likely to be able to choose who we disclose to and we’ve had years or decades of having insufficient explanations for our experiences. We’re more likely to have more access to other autistic people, and to resources created by and for autistic people, at the time we learn we’re autistic. And because adults often have to actively seek out a diagnosis, or come to a self-diagnosis after looking for something to explain what’s going on, the subset of autistic adults who get diagnosed/self-diagnosed includes more people who think knowing they’re autistic will be helpful.
This doesn’t mean it’s better to wait for diagnosis until adulthood, and it’s never better to wait until a burnout or crisis. It means that learning you’re autistic should happen in a setting where it brings brings needed support and self-knowledge, should never be used to harm, and should happen as early as possible. This is basically what we all want.
I want to add that age at diagnosis doesn’t neatly define separate groups of people, since people (including autistic people) sometimes misunderstand that. Some people aren’t identified as autistic in childhood solely due to the stereotype that only white boys are autistic, or that being autistic means you can’t be interested in other people or have friends or speak, none of which are criteria for excluding people from a diagnosis. Some people aren’t identified because their parents are neglectful or abusive. Sometimes people diagnosed as children and people diagnosed/self-diagnosed as adults literally the same people; their parents hid their diagnosis from them and they only found out after they learned they were autistic as an adult.
Ada: What’s the most surprising thing you learned while putting together “Knowing Why”?
Elizabeth: It was surprisingly hard to find adult-diagnosed/self-diagnosed cis men to contribute, probably partly because cis men are more likely to be diagnosed in childhood. It’s also possible that girls, women, and other autistic people who are female-presenting or grew up female-presenting have to self-advocate more strongly. We have more executive function impairments and more difficulty managing tasks of daily living (see https://www.thecut.com/2017/08/a-new-look-at-how-autism-affects-girls.html) and are put under pressure to meet gender role expectations for neurotypical cis women, who are expected to do more executive function and caretaking than neurotypical cis men. So we’re less likely to get diagnosed as kids, pushed harder to do things we’re already less able to do, and consequently may wind up thinking and talking and writing more about how being autistic affects our lives (though this doesn’t mean that cis men and male-presenting autistic people have it easy!). That’s speculation, but I don’t think it’s unreasonable speculation.
I suspect women and female-presenting autistic people also have greater rates of unemployment and unemployment, both due to more difficulty working and to gender role expectations, especially for childcare, that result in our staying at home or working part-time, and that results in more of us being writers because other options are less accessible to us. But that’s even more of a guess.
Ada: What do you hope neurotypical readers will take away from this book?
Elizabeth: That our experiences are meaningfully autistic ones. Being autistic influences many aspects of our lives, and knowing we’re autistic is important, often helpful, and sometimes essential. Sometimes people (including sometimes autistic people) think that if we’ve grown up without being recognized as autistic, it’s because it doesn’t affect us much, but that’s not accurate. When we look superficially neurotypical, it’s because we’re doing a lot of effortful and tiring work behind the scenes.
That other aspects of our identities interact with our being autistic, and lead to our having different experiences from each other.
Most of the pieces offer practical tips for coping or self-discovery, and it’s possible some of those will be useful to neurotypical readers as well.
Ada: What’s next for you as an editor? Are there more projects on the horizon?
Elizabeth: I’m writing a humor fantasy novel set in a malfunctioning magical theme park (which includes, among other characters, an autistic character). It’s pretty far along in revisions, and I’m also working on a sequel for this year’s NaNoWriMo. I’ve committed to finishing at least the first one and getting it out on submission before taking on any other writing- or editing-related projects. I’m also maintaining a system I developed for ASAN to make legislative advocacy more accessible, as a secondary project.
If I did take on another major editing project, I’d love to do a nonfiction anthology exploring autistic people’s experiences with gender identity, or a fiction and nonfiction anthology with autistic authors writing on changeling tropes. I’ve also thought about starting a speculative fiction humor magazine.
If you liked this interview, you can check out “Knowing Why” for yourself here on ASAN’s website!
Here’s another announcement I have been late making! Augur Issue #1.3 is out, and my poem “How I Knew My Professor Was a Faerie in Disguise” is in it.
Augur is a Canadian magazine of literary fantasy and fabulism. The tagline of this issue is “From dragons to swans to Tim Horton’s.” Without giving spoilers, I’m pretty sure my poem is where the Tim Horton’s part comes from. 😀
You can read the poem by purchasing the issue or subscribing on Augur’s website.
Last week, Angry Robot and the Czech publisher Triton agreed that THE OUTSIDE will be published in a Czech translation in the next 18 months.
This is my first foreign book sale, and I’m very excited!
Full story here: https://www.angryrobotbooks.com/2018/11/the-outside-heads-to-czech-republic/
Today’s Book: “Conservation of Shadows,” a short story collection by Yoon Ha Lee
People who have read my reviews of Ninefox Gambit, Raven Strategem, and Revenant Gun will not be surprised that I am a big fan of Yoon Ha Lee’s writing, or that this fandom extends to his short stories as well.
“Conservation of Shadows” is an excellent collection which shows off Lee’s strengths as a writer while also displaying surprising breadth.
Lee is most famous for war-torn space operas full of wildly imaginative, magic-like technology, and these types of stories are certainly on display throughout the collection. Folded, origami-like papers come to life as battle drones (Ghostweight); a group of exiles compose music in honor of ships that have flown into a black hole (Swanwatch); a gun exists that will leave the person shot unharmed but erase all their ancestors from existence (Flower, Mercy, Needle, Chain); a book contains the souls of the dead and can be opened to draw on those souls’ abilities (The Book of Locked Doors).
But Lee also strays skillfully out of that genre, from stories of pure high fantasy in which necromancers or demons battle, to the urban sci-fi fantasy of the story “Blue Ink,” in which an ordinary modern-day child is summoned to the end of the world.
My personal favorite stories include “Iseul’s Lexicon,” a longer tale involving strange, cruel, fey-like aliens, in which linguistics are applied defensively to a magical language; and the title story, closing out the collection, in which the myth of the Descent of Inanna is repeated again and again by artificial, far-future entities.
Fans of Shuos Jedao (and, let’s face it, who isn’t a fan of Jedao?) will also enjoy “The Battle of Candle Arc,” his first published appearance, in which we watch him win a space battle using clever tactics against ridiculous odds, and get a hint of the motivation that drives him all through the Machineries of Empire trilogy.
There is a hint of non-neurotypicality in some stories, including “The Shadow Postulates,” in which the protagonist briefly mentions wanting to stim by unraveling the tassels of a carpet, but refrains so as not to disturb her roommate.
But for the most part, non-neurotypicality isn’t highlighted in this collection. It’s simply a very good group of stories by a very good autistic author, and that should be reason enough to go check it out.
The Verdict: Recommended-2
Disclosure: I have interacted very occasionally with Yoon Ha Lee online.
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For a list of past/future/possible Autistic Book Party books, click here.
With all of the things going on, I’ve neglected to promote some of my new short work this fall.
STORY REPRINT: Minor Heresies
“Minor Heresies,” which first appeared in Ride the Star Wind, has been reprinted in Transcendent 3: The Year’s Best Transgender Speculative Fiction. I was surprised that Bogi thought the story was “trans enough,” to be honest – but I am definitely not complaining about this lineup. (I am TOC-mates with Yoon Ha Lee, Shweta Narayan, Rose Lemberg, Rivers Solomon, AND Charlie Jane Anders! Among others. *heart eyes*)
“Minor Heresies” is set in the same universe as THE OUTSIDE, but occurs about 200 years earlier.
NEW POEM: singing teeth
In September I posted “singing teeth,” a new poem, on Patreon. It was exclusive to $5+ backers for a month, but now it’s free to everyone. This one is about finding one’s voice and having it be a more difficult voice to manage than one thought. Read it here.
NEW POEM: Held Tongue
A brand new Patreon poem for November, “Held Tongue” is still in its exclusive phase, but if you’re a $5+ backer (or want to become one) you can find it here. I’ll post again when it becomes open to everyone. Cheers!
Just in time for Halloween, Tor.com has revealed the AMAZING awesome spooky cover art for THE OUTSIDE!
I love this art SO MUCH, and I’ve been impatiently waiting for the reveal ever since my editor showed me the first draft version.
The reveal also comes with a short essay by me about mysticism and Lovecraft. You can read it here.
It’s been a busy, stressful summer, but that hasn’t stopped me from finding a few stories and poems that fill me with delight.
Half of it is from Twisted Moon. Don’t judge me.
Brooke Bolander, “The Tale of the Three Beautiful Raptor Sisters and the Prince Who Was Made of Meat” (Uncanny, Issue Twenty-Three, August). This is a feminist velociraptor fairy tale and if the words “velociraptor fairy tale” don’t already have you bounding off to read it then I don’t know how to help you. It is SUCH fun. It is a thing of pure joy and I’m just a tiny little bit mad that I didn’t think of it first.
Beth Cato, “To This You Cling, With Jagged Fingernails” (Fireside, June 2018). This is not a horror story. It is quiet and domestic and melancholy and nothing scary happens. But it also is a story that captures one of the inherent horrors of adolescence, especially non-neurotypical adolescence (although it is not an autism story either), in a way I have never seen done this accurately before. I feel seen by this story.
Meg Elison, “Rapture” (Shimmer #44, August). This story is beautiful and amazing. I want to go to Elison’s afterlife-for-writers when I die.
Lavie Tidhar, “Gubbinal” (Clarkesworld, July). This is gorgeously alien (in the adjectival sense) SF with just the right little hint of cosmic horror. But what I most appreciate about it is the Boppers. If AI ever did run amok, become self-sustaining, and escape its creators, it would be vastly less likely to take over the world etc as humans understand it, and much more likely to behave more or less the way Boppers do. As a computational creativity researcher, I love them.
Alix Bosley, “Leda’s Womb” (Arsenika, Issue 3). YOU WANT SOME MYTHIC BODY HORROR POETRY? HERE’S SOME MYTHIC BODY HORROR POETRY. This gave me a very effective heebie jeebie without even talking about anything graphic or gross, just eggs and pregnancy and birds. Yipes. Well done.
Ceto Hesperia, “Io.” (Twisted Moon, Issue 4). Proving once again that I am a sucker for sexy astronomy poems.
Ariadne Makridakis, “Desert Skin in the Rainforest” (Twisted Moon, Issue 4). And this one! This is just so sensory in the best way.
Lynne Sargent, “Tasting” (Twisted Moon, Issue 4). Um. Speaking as a wildly unpredictable non-neurotypical person, I am pretty sure being in a relationship with me is EXACTLY like this poem. Again, I feel seen.
These past two months marked the release of Uncanny Magazine’s Disabled People Destroy Science Fiction! special issue, and many autistic authors appeared in this issue at the top of their game – both existing favorite authors of mine and at least one voice which is new to me.
Rita Chen, “Ctenophore Soul”
[Autistic author] A poem about the central role of damage and injury in… well, all of life, and of choosing to live with the damage instead of trying to erase it. I love the sea imagery in this – I am a sucker for anything involving weird sea creatures and a ctenophore is a real thing. [Recommended-2]
Rose Lemberg, “core/debris/core”
[Autistic author] This is a poem about skin disease, but also about aesthetics and shame, about the desire to write a future in which everything is clean and perfect, even though this denies and erases the reality of human bodies – particularly disabled human bodies, but also all of them. Angry and compelling. [Recommended-2]
A. Merc Rustad, “The Frequency of Compassion”
[Autistic author] Ok so this story just happens to push, like, SEVENTEEN of my personal story buttons at once and I love it. “The Frequency of Compassion” is a first contact story in which Kaityn, a hyperempathic autistic astronaut, encounters a wounded member of an alien hive mind. I love the hive mind – a friendly entity/ies in which individuals remain distinct and valued parts of the whole – so much. I love Kaityn’s helpful AI friend Horatio. I love the way everyone respects each other’s pronouns and needs, how the alien makes mistakes with Kaityn’s mental boundaries and then apologizes and fixes them, how both the AI and the aliens respect and make adjustments for Kaityn’s needs, including the need for a few days of downtime after a stressful experience and for forms of sensory stimulation that aren’t overloading. I love how Kaityn is kind-hearted and interested in art, despite their need to withdraw from other people. I love how they are hyperempathic on a sensory level, but are also shown as deeply caring even when they don’t sense emotions directly – respecting the imagined boundaries of the moon they land on, for instance, with a characteristically (but un-stereotypically) autistic sense of animism. I just. I love almost everything about this. GO READ IT. [Recommended-1]
Bogi Takács, “Spatiotemporal Discontinuity”
[Autistic author] This poem shares some traits in common with Toward the Luminous Towers and other work of Bogi’s – depicting, not a real-life disability, but the experiences of a person in some other world who is modified for some sort of incredible journey through physical or conceptual space, and who has difficulty with ordinary embodied existence afterwards. Bogi’s writing about this type of techno-magic and its complex personal and social effects is always fascinating, and this one is no exception. [Recommended-2]