Knowing Why: An Interview With Elizabeth Bartmess

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.

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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.

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If you liked this interview, you can check out “Knowing Why” for yourself here on ASAN’s website!

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