For people who are diagnosed with autism in adolescence or adulthood, or people who are cut off from community-building for many years by lack of access to effective communication tools, finding the Autistic community can feel like finding Utopia. Finally! People who brain the way you do! People whose response to “hey, do you ever…” is “whoa, yes, of course I do” instead of a sideeye! People who have words for things you’ve always known are real but have never been able to word, like “stimming” and “inertia” and “burnout”!
Of course people want to dive right in upon finding this. It feels like a relief. It feels like home.
…Unfortunately, leaping in feet first can have undesirable results.
The Autistic community is a community. It’s indicated with a capital-a “Autistic” to signify that the community is infused with Autistic culture (compare “deaf,” or unable to hear, and “Deaf,” or part of a culture created and maintained by people who are unable to hear). And one thing all communities and cultures have in common is that they have rules. They have structures. They have established ways of doing things and people who do them.
It can be tough for autistic folks to realize that even Autistic culture has these rules and expectations. We get so used to watching non-autistics swim easily in our daily lives, while we gasp and flail, that we don’t realize that non-autistics, too, had to learn how to navigate. They don’t have to learn the way we did; the rules are more intuitive for them to grasp. But they had to be taught things like how to hold doors, say please and thank you and make small talk about the weather.
Autistic communities have rules, too. They’re just normed for the way we communicate and brain. And jumping in without being aware of them–or worse, insisting they don’t apply to you and that everyone else is somehow oppressing you by expecting them–can lead to serious misunderstandings, hurt feelings, and even retraumatization.
I found Autistic communities in 2010, shortly after I was diagnosed. By 2015 I was one of our communities’ published authors, presenting at multiple conferences a year, and having the awkward “celebrity experience” of having people sidle up to me bashfully to say “I love your work,” then squeak and disappear.
You don’t need to become a local celebrity if you don’t want to (in fact, it’s not as much fun as you’d think). But here’s how to avoid lobbing a grenade into a community that will otherwise offer your greatest support.
1. Read lots of blogs.
Blogging is the cornerstone of Autistic literature and culture. There are hundreds of blogs out there by culturally Autistic bloggers–more than I can possibly list here. Among the most culturally significant ones, however, are:
autistics.org – A classic, and essential reading for anyone who wants to understand Autistic culture. While the site itself appears to have disappeared, certain classic articles on it are available via the Wayback Machine. (The link leads to the archived version of “Help! I seem to be getting more autistic!”)
With a Smooth Round Stone – Mel Baggs has been part of the community for many years and has written many of the foundational texts, including large portions of autistics.org.
Radical Neurodivergence Speaking – Kassiane has been part of Autistic communities since literally the previous century. She’s also unflinching in her morals and has demanded unceasingly that our humanity be respected by the rest of the world.
Neurocosmopolitanism – Nick Walker’s posts on neurodiversity are the central texts on neurodiversity as a scientific fact, framework for viewing the world, and sociopolitical movement. Essential reading for anyone who wants to understand exactly how serious the community is about shedding pathologizing labels.
Yes, That Too – Alyssa Hillary has been writing about autistic topics with insight and compassion since before I got here. I consider Alyssa one of my “elders,” even though I’m ten years older.
2. Read some books and articles, too.
Books on autism continue to proliferate, so this task is getting harder than it once was–but better information is available in book and article form than there once was, too. It pays to be familiar with the really big fiction and non-fiction titles, like Neurotribes, Look Me In the Eye, Talking in Pictures, and The Curious Incident of the Dog In the Night-Time. If you’re going to talk about specific topics, like ABA or “refrigerator mother” theories of autism, make sure you’ve read the key texts there (the foundational texts of both are available on my archived blog).
But don’t stop there: to be properly connected with Autistic culture, you’ll need to read books by a wide range of a/Autistic writers, like The Reason I Jump, Typed Words Loud Voices, and the Clay Dillon series. You’ll also want to familiarize yourself with some of the academic work in the field, like Anne McGuire’s War on Autism and Jordynn Jack’s Autism and Gender. You don’t have to read these cover to cover unless you enjoy that kind of thing; just Google them and check out the summaries so you know they exist.
It’s not just books: Autistic communities have articles everyone is familiar with, as well. These include:
- Don’t Mourn for Us – Jim Sinclair’s essay aimed at parents whose child has just been diagnosed.
- Being Autistic Together – Jim Sinclair’s cultural commentary on the creation of ANI, or “the story of how one Autistic community was put together and why its expectations are the way they are.”
- Here, Try On Some of My Shoes – K’s piece is so well-known it is often summed up with a single word: “Shoes!”
- It’s Time to Accept That They Hate You – Athena Michaels-Dillon sums up why so many people in Autistic communities no longer even want to talk about “playing nice” with non-autistics who won’t ally with us.
- Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind – Melanie Yergeau’s article in Disability Studies Quarterly is the best academic piece currently existing on the topic of “theory of mind.”
A decades-old Internet custom (and I mean “decades”; we did this back in the days of dial-up and Usenet) is that of “lurking.” Basically, it means joining an online community, making a brief introduction, and then reading along quietly for a while until you’ve gotten the hang of the pacing, ideas, and terminology used in that community. People who demonstrated they had not done this “background reading” were admonished to “lurk moar, n00b.”
Lurk in Autistic communities for a while. Read blogs. Read blog comment threads. Join communities on Facebook. Follow hashtags (be aware: #actuallyautistic tends to contain actually autistic people, while #autism tends to contain far more parents bemoaning their child’s sad and sorry fate, on both Tumblr and Twitter).
4. Lurk moar.
A brief introduction when you first join a Facebook group or similar online forum is a good idea, but after that, just sit back and observe for a while. Notice who posts, who comments, and what gets said. Notice how certain topics are handled. If links or other information is posted in response to someone’s question, read this information. Make a good-faith attempt to find the answer to any question yourself before you post it to the community.
5. Stop lurking when you know you can contribute in a way that isn’t regularly done yet.
For me, this happens in one of two ways:
- I speak up in a community when I know the answer to a particular question, when I can link someone to a resource that answers that question, or when I can paraphrase or explain a concept in a way that hasn’t been done in the conversation already.
- I blog when I have something to say that I haven’t already seen said on another blog.
These two parameters don’t hinder me much. I’m prolific: I write 10,000 words a day on average, and 20,000 when I’m really “working” that day (like today). I’ve published two academic articles (here and here) on autism-related topics, and I have an academic book chapter on autism and changeling myths coming out next year. I’ve written an entire novel whose foundational “stuff” is my lifetime of autistic-in-a-nonautistic-world experiences. I’m writing its sequel as we speak. There are at least four more in the series after that.
But I didn’t even start writing about autism until 2013. I didn’t start publishing any of that writing, even in blog form, until 2014–the same year I started actually speaking up in online communities. My first academic article didn’t come out until 2015, the same year I started attending conferences to meet other actually-autistic people in meatspace.
The aforementioned Athena Lynn Michaels-Dillon, who is now my editor, my best friend, and the person who gave me my current job? Yeah, I sat on her university email address for over a year before I contacted her, even though it was given to me by a colleague who knew we’d get along like a house on fire. And when I finally contacted her, I didn’t even contact her–I had the editor of the Hilltop Review do it for me! Score one for autistic shyness, I guess.
You certainly do not have to be an academic or a prolific writer to be valuable and valued in Autistic communities. You do need to contribute perspectives that move conversations forward in some way.
6. Piss people off strategically.
Notice I didn’t say “don’t piss people off.”
Sometimes, in life, you need to say or do things that other people disagree with. Sometimes you need to say or do things that other people think are downright wrong, rude, mean, or unfair. This might be as small as saying to someone on your Facebook friends list, “Please stop defending ABA on my wall or I will unfriend you.” It might be a bit bigger, like saying to another professional in your field, “I refuse to work with you as long as you insist that trans women aren’t really women.” It might, someday, be as big as saying to a business partner, “You no longer do your job, so you need to leave.”
Autistic communities are part of life, which means that sometimes you’re going to piss people off. The important thing to do is to choose when, where, how, and who you piss off as much as possible. Lurk enough that you know who the most prominent people in the community are. Read their work and talk to them so you know what is important to them and how they think. Doing so empowers you to decide whether you want to alienate this person, and if so, what it is that matters to you more than being their buddy.
(Psst – this is particularly important if you ever want to write a book about autism.)
What all six of these point boil down to is respect. Respect the communities you want to participate in, and they’ll respect you.
My Patreon is full of exclusive fun stuff, including sneak peeks at the aforementioned very-Autistic novels–and you can help me write more of them.