Friday, November 2, 2018

Knowing Why Is Everything: An Interview With Editor Elizabeth Bartmess on Adult-Diagnosed Autistic Perspectives

Sarah Kurchak
www.riskyfuel.com

The Knowing Why book cover
[image: Book cover with a black background,
with silhouettes of people of all sizes
and a dog, in a rainbow of colors.
Rainbow-colored text  at the top reads,
"Knowing Why: Adult-Diagnosed Autistic
People on Life and Autism.]
There are many problems with the ways in which autism is currently seen and represented in the media and public discussion. When the face of autism is still predominantly white, cisgender, heterosexual, middle or upper class boys, it erases autistic people of color, LGBTQA autistic people, and poor autistic people from the conversation and denies them vital supports and resources. It also ignores the fact that there’s an entire segment of the autistic population that spends their entire childhoods and adolescences not knowing that they’re autistic at all.

As someone who wasn’t diagnosed until I was 27, I grew up knowing that I was different but not understanding how or why for a large chunk of my life. That experience has shaped me in both positive and negative ways that are sometimes quite different from those of my counterparts who knew so much earlier. This has made me particularly interested in the perspectives of other people who have gone through similar processes. What common ground do people who were diagnosed or self-diagnosed in adulthood have? How do race, gender, sexuality, and class influence this later onset understanding of oneself? How does adult diagnosis inform our past, present and future? What can we learn from each other?

So I was thrilled when The Autistic Self Advocacy Network released its anthology Knowing Why: Adult-Diagnosed Autistic People on Life and Autism. The collection includes nonfiction pieces from a diverse group of autistic writers, and tackles everything from intersecting identities to passions to workplace concerns and burnout. It’s an excellent read and a valuable resource for anyone who has been through the process of being diagnosed or self-diagnosed as autistic in adulthood, anyone who wants to better understand us, and anyone who might be wondering if they might be autistic themselves.

I corresponded with the book's editor, Elizabeth Bartmess, to learn more about the anthology’s genesis, conception, and goals.

Can you tell me a little about the genesis of this anthology? What made you want to produce an anthology of work by people who have been diagnosed or self-diagnosed as adults?

In 2015, I was organizing collaborative Twitter hashtags, including #AutChat (which I'm still doing) and the #AutismMeans hashtag series. Ari Ne'eman asked if I was interested in editing this anthology for the Autistic Self Advocacy Network (he was president of ASAN at the time). He proposed a nonfiction anthology, with personal narratives by adult-diagnosed/adult-self-diagnosed autistic people, aimed primarily at an autistic audience.

When autistic people come together and share their personal experiences, a particular kind of magic can happen. Often there are refrains of "I thought I was the only one!" and "I never realized that was related to being autistic." Frustrations get shared, tips get passed around, lives get better. (This isn't just an autistic thing, of course, and it doesn't always happen, but I've seen it happen often.)

We also learn about experiences that differ from our own. Autistic people vary in our autistic characteristics, in other aspects of our identities, and in our own specific life situations. Creating supportive communities requires developing a broad understanding of both our similarities and differences.

When people learn they're autistic later in life, and get accurate information about autistic experiences, they often have many closely spaced epiphanies about their lives. I found this valuable to go through myself, and fulfilling to help happen for other people. The anthology was an opportunity to do that on a broader scale.

Did you have a list of prospective authors in mind when you started to put together this anthology?

There so many good autistic writers! Some people came to mind immediately, and I learned of more people along the way. In a couple cases I asked for adaptations of existing pieces. We also put out a call for interested writers, and got a big response. The final set of contributors is about half-and-half people I approached, and people who contacted me.

As an adult-diagnosed person myself, I’m impressed and pleased at the wide variety of extremely relevant topics that are tackled in the collection. Did you have themes in mind, or did they naturally appear as a result of the material the writers were submitting?

Thank you! I asked some authors for pieces on specific topics (intersectionality, mental health, managing disability and chronic illness, sensory and social issues). Other authors suggested topics; the ones included in the anthology are burnout, accommodations at work, technology, and passions, (often called "special interests"), and intersectionality and coping skills. The overall theme—the value of knowing that you're autistic—emerged out of the individual pieces.

Some common topics have been covered in depth elsewhere, so I didn't include them in the anthology. For example, navigating the diagnostic process as an adult, job interview etiquette, handling college. There are also important underserved topics I didn't include, such as trauma recovery, acquiring needed supports, poverty, and homelessness. Those need careful and extensive coverage, and I didn't think I could do them justice. And there are topics I didn't include because I didn't have space, or didn't realize their importance at the time, or had them lined up but they fell through (aging, parenting, pregnancy, queer dating and relationships are particular topics that come to mind). Many of these topics have had some work done, but it would be great to have more.

I really love your introduction, which addresses a lot of questions that I think every autistic writer and/or public figure receives when they write anything about their own autism. It also addresses a lot of concerns that many autistic people have about their own place in discussions like these. Why was it important for you to tackle these concerns so directly off the top?

Thank you! I wanted to address common misconceptions right off because they can be particularly emotionally fraught for autistic people who weren't diagnosed in childhood, to the point that even just reading about autistic people's experiences can be stressful. I think it's helpful for non-autistic readers too, but the primary reason I wanted to address them was autistic readers.

The first misconception is that if someone wasn't diagnosed as a child, it's not important for them to know they're autistic. Autistic people are often told we don't have the experiences or needs that we do have, and we internalize that, to one degree or another. Many undiagnosed autistic adults first seek help and answers when unattended needs and the cost of masking autistic traits have pushed us into crisis, because it can take a crisis to override our internalized beliefs that we don't need or deserve support or understanding. Even people who aren't in active crisis are often struggling; it's just not true that lack of diagnosis/self-diagnosis means that we're fine.

The second misconception is that exploring whether we're autistic, thinking we're autistic, self-diagnosis, or even formal diagnosis insults and harms "real" autistic people. That's not true for a lot of reasons—health professionals often fail to diagnose people for superficial reasons, like being nonwhite or being female-presenting—but the reason I wanted to emphasize is that even if they're ultimately wrong (and they're generally not), when people explore whether they're autistic by reading about autistic people's experiences, it increases knowledge and understanding of autistic people. And when people realize they're autistic, that typically helps them personally, and also helps other autistic people generally. There's strength in numbers.

The third misconception is that autistic people are alike, so that if you don't see yourself in someone else's experience it must mean you're not really autistic. Autistic people vary a lot! That's part of what being autistic involves.

Your introduction also includes an acknowledgement of adults who are questioning whether or not they might be autistic and the anthology includes a list of resources for them, as well. Why was it important to you to reach out to this population?

I addressed some of this in my answer to the previous question, but I'll mention two additional reasons.

First, in my experience, and that of other people I've talked to, people generally start considering that the might be autistic because they are. Not always—sometimes it's some other variety of neurodivergent, like ADHD or CPTSD (both of which are common in autistic people too! Having one of those isn't equivalent to not being autistic). But they're rarely neurotypical.

Second, autistic people have built a number of strong autistic communities. People in them often have strong autistic identities, and talk about our differences from neurotypical people, and that can give outsiders the impression that if they don't have a strong autistic identity they must be neurotypical. That's not true; being autistic and having a strong autistic identity aren't the same thing. But people who are questioning whether or not they might be autistic can get the impression that it is true, and that's a barrier to self-knowledge, support, and help. (Including for people who are not autistic, but some other variety of neurodivergent.) So it's important to reach out.

Autistic people who were diagnosed or self-diagnosed in adulthood can have very different experiences—and often very different feelings about their autism—from those who were diagnosed as children. Is there anything that you hope that someone who was diagnosed in childhood might take away from reading this anthology?

When adult-diagnosed/adult-self-diagnosed people learn they're autistic, they typically have more autonomy than kids or teens do. Adults usually have more ability to influence who else gets to know that they're autistic, to refuse harmful quack "cures", and to refuse harmful therapies. (Not always, but more often.) Adults are also more likely to get diagnosed or to self-diagnose because of needs they themselves have identified.

This doesn't mean that it's better to wait for diagnosis as an adult. Often by the time we get diagnosed or self-diagnose, we've had many negative life experiences that already knowing they were autistic would have helped with. It's better to be diagnosed earlier and also not be subjected to mistreatment.

I hope what this anthology offers to autistic readers who've had bad or mixed experiences—some early-diagnosed autistic people but also some late-diagnosed/late-self-diagnosed autistic people—is a picture of what knowing you're autistic should get to look like: the benefits of self-knowledge when combined with relative autonomy and the ability to refuse consent to diagnosis-related harmful treatment. This is the world we want for all autistic people.

(A few caveats: knowing that you're autistic can do more harm than good when accompanied by misinformation about autistic people. For some people, learning that you're autistic means realizing that some things they thought they could change, they can't; that's rough, and grieving over it is normal. And sometimes the diagnosis can result in having autonomy or opportunities removed, even for adults.)

I think the anthology can also offer the same thing that learning about other autistic people's experiences can offer any autistic person, regardless of age at diagnosis/self-diagnosis: the chance to compare someone else's experiences to your own, think about might-have-beens, and potentially come up with ideas that could help you now, or that could help people who were in a position that you used to be in and that you could potentially help work toward, if that's something that's rewarding for you.

What about potential non-autistic readers? Is there anything you hope that they’ll take away from these essays?

That being autistic affects so many different aspects of our lives. That our experiences and challenges are not necessarily reflected in what we may look like to casual observers. That our identities are complex, and not just about being autistic. That we can be incredibly resourceful (even if we shouldn't be tasked with as much as we are).

Some non-autistic readers understand some or all of this already, particularly people who share significant similarities with autistic people due to other neurodivergence or disability, but also some neurotypical readers. They may be able to pick up some useful tips or ideas from the anthology, since coping skills that help autistic people can help other people, too.

Is there anything else that you’d like to address or discuss in this Q and A?

I started writing an answer, which accidentally turned into an essay too long for this interview. The brief version: how can we use accumulated autistic self-knowledge—of which this anthology is a part—to help deal with the extra burden that current and ongoing geopolitical events impose on autistic and similarly disabled people? In particular, how can autistic communities support autistic and similarly disabled people who are already maxed out and have no time or energy to devote to helping anyone else?

The anthology closes with a piece by A.C. Buchanan encouraging us to think and discuss our relationship to technology, not just as individuals but as communities. I think we can better use technology to expand the reach of our community-developed self-knowledge—in particular to help more autistic people identify themselves as autistic, to create additional supportive connections between autistic people, to create additional autistic spaces and make existing autistic spaces more inclusive, and to make more non-autistic spaces more accessible (including activist spaces).

There are already people who work on all of these and have worked on them for a long time, and made progress. I think we can channel more community effort into supporting those efforts and into creating new ones, and that using technology in new or different ways will be part of that.