Sunday, November 1, 2015

Family: A Love Letter to Autistic Space

Earlier this year, I had the opportunity to attend Autism Campus Inclusion, an annual, week-long summer leadership workshop created by the Autistic Self Advocacy Network. The main purpose of the event is to teach organizational, leadership and advocacy skills. However, both the participants and ASAN executives recognize that some of the most valuable learning experiences occur outside the workshop time, in casual conversation among the participants. On the first day, Ari introduced the workshop by stating that "this is Autistic Space. Therefore, you are allowed to be Autistic. You can rock, flap your hands, get up and pace, or leave the room at any time."

I've been in physical gatherings of only autistic people before, but I don't think many of them were ready to recognize Autistic culture as a concept, let alone critically analyze its meaning. In a casual two-hour discussion group at a coffee shop, there isn't much time dedicated to having a facilitator explain cultural values. A gathering of autistic people is not automatically Autistic Space. There is a whole spectrum (!) from "100s" like me, actively working on behaving more autistically, to those who consider acting neurotypical to be a desirable practice.

The essential elements of Autistic Space are naming it, explaining it, excluding the opposition, and giving it time to grow organically. At Autism Campus Inclusion, it turns out that a week is plenty of time. 17 Autistic people gathered in a dorm to proudly obsess over their favorite topics. 17 variably verbal Autistic people cooperatively enforced the "raise your hand" system, recognizing it as a practical necessity not limited to children or classrooms. 17 victims of ableism got a chance to freely vent about the ignorant shit assholes spew, not having to carefully explain why it's bad or argue against opposing politics. 17 transgender Autistic people (okay, maybe a few of us were cis) talked about gender identity in ways that both cis autistics and trans neurotypicals can only respond to with "yup, that sure does sound weird and complicated!" 1 Autistic person flapped their hands. The other 16 followed like dominoes.

One of the less organic elements of the event was the Color Communication Badge system, a recognition that social access is just as important as the physical (ramps, elevators), sensory (quiet, darkness), and emotional (respectful language, trigger warnings). For the uninitiated reader, the Color Communication Badges are a set of three cards, with a single "active" card showing in the front, interchangeable at any time.
  • Green means "I'm open to social interaction. Please approach if you are too."
  • Red means "I need to be alone. Don't approach me unless it's an emergency or I've told you ahead of time that you're on my red list as a support person."
  • Yellow means "I want to be social, but only with people I already know."
At ACI, some confusion arose specifically around the meaning of the yellow badge. I stated, and several others agreed with the sentiment, that I already consider us friends. Therefore there was little difference between green and yellow. I decided to repurpose the yellow badge as the generic, often-yellow symbol for "proceed with caution" and in practice, this was how it worked in general.

As I explained in the closing remarks, this was a misrepresentation of my own perspective, because I was afraid to say how I really feel: Other autistic people are not my friends, they are family. Before I go on with my own interpretation, I ask you, reader, to take a moment to think about this distinction. Words mean things, no matter what your dictionary says. There's a difference in feeling when you think about friends versus family. If you're Autistic, you might already know exactly what I mean. If not, it's at least a clue.

Friends are those we choose to maintain connections with. Family is who we're born with. One of the many blessings of autism is that we have a birthright to join the Autistic community. Just as queer or Deaf children may feel more connected to their communities than their bio-families, Autistic people thrive in the company of other Autistic people. Neurotypical parents are at best a supplemental aid, usually outright detrimental.

Even though I am privileged with access to a car, most people are surprised to find out that I regularly travel upwards of 30 miles, or about 3 hours of driving time, to get to those 2-hour coffee shop groups. Previously having acted intuitively, after ACI I've realized on a more conscious level the motivation I have to spend more time in the Autistic community. When asked where I'm going, my scripted answer is "I am visiting my family."

But where exactly is this "Autistic community", initialized with a capital A to signify cultural relevance? After all, I just said that the coffee shop groups, the majority of physical gatherings at least where I live, don't generally recognize autism as a culture (although I'd argue that a culture can develop even if the developers don't realize it). A community by definition is an interpersonal hub of culture. Putting a bunch of Autistic people in the same room, with no cultural significance, is just a gathering, not a community.

Before I gave in to worldwide peer pressure and created a Facebook account, I had already heard about some of the popular quirks, including "pokes" and "likes" as well as the way people use it. I decided early on that I would avoid a particular stereotype of internet users by never "friending" anybody I hadn't met, but otherwise take a pretty relaxed attitude: "If I've met you at least once, we can call each other friends online." Within the past year, I've adopted a second rule: If you are Autistic, you are my friend.

I realized that I wanted more Autistic internet friends because I thought about how I came to understand that autism is a culture. A local social group recommended a popular blog as an information resource, which in-turn led me down a rabbit hole that has no bottom to be found. I now consider myself a collector of blogs. I started my own blog because of the cultural role they play. I follow so many #ActuallyAutistic people on Twitter and Tumblr that my feeds rarely show anything directly from someone who is not Autistic. I joined all the Facebook groups I could find, stumbling through bans from several bigot parents along the way. One such group serves as a place for support, venting, complex discourse, political action, and fun musings, all in a swirl of differing communication styles and emotional circumstances. Such a beautiful tapestry did not paint itself by chance; it was deliberately engineered to be a safe space lacking the presence of even a single non-Autistic person. By connecting online, we defeat the obstacle of geographic separation. The internet is doing for Autistic culture what sign language does for Deaf culture: It gives us a standard means of communicating, to share ideas and values. I "meet" other Autistic people online in the same way that people "speak" sign language. That is to say the scare quotes are not necessary.

Still, as much as I love the internet, and recognize it as equally legitimate and valuable as other parts of the real world, there are some things beyond its capabilities. We do not have spontaneous conversations resulting from random circumstance. We do not stim together, or take photos together, or put a hundred people in the same room.

For Autistic Space to appear offline, we must defeat geography in different ways: One is travel of course, but in a capitalist world, this can only happen on special occasions: Workshops, conferences, retreats. The more important mechanism is growing our numbers: We must impart the knowledge and values of Autistic culture upon those who are currently disconnected. The 1-2% statistic is significantly higher than the comparatively more prideful Deaf community, which has to overcome similar obstacles of isolation and ableism. Those of us who are activists must keep seeking out those who are part of our family but outside of our community. Eventually we will reach critical mass and the sociological system will become self-perpetuating.

There are many members of our community who are suffering from internalized ableism, some of whom generalize their self-hatred and lash out at other autistic people. This I know, and I have yet to express how it saddens me. They too are family. However that does not mean we must accept their actions. Bio-families have toxic members too, and I wholly endorse removing them from our lives. The difference is that by cultivating a beautiful and vibrant community, we may grant them a desire to return, strong enough to change their ways.

Every autistic person has the right to experience Autistic Space. Recognizing that through action is my hope for the future of my culture, my community, my family.


  1. Well, that was interesting.

    So much in this for me to process. I'm quite sure I've never experienced Autistic space as you describe it. The closest thing is my relationship with my romantic and life partner, which is so far the only non-solitary setting in which I have ever felt free to stim. The only time I've lived alone is a 1.5 year period between finally escaping the nest at 28, and having this beautiful soul somehow land in my proximity a year and a half later. Being a working-class kid, I always went for triple or quad occupancy at skool, for example. Being an underachiever at careerism meant staying with my parents longer that I probably should have, etc. Considering institutionalization for hand flapping (and selective mutism and a few other "complaints") at age 7, that's a solid 14 years of stim-suppression. Not 24/7 for the whole time, as I was fortunate to have some "latch key" time in the formative years, but first living alone experience at 28 and first supportive relationship at 29; isn't a "marathon" something like 29 miles or something? No doubt that has drilled some internalized ableism into my being.

    But again, this post was interesting, and took me some time to read. And a lot of stimming, if you don't mind my saying so. After all, on the Internet,( in theory,) nobody knows you're stimming. Which is both a feature and a bug.

    There's always the question of how quick or slow one is to self-diagnose. If too slow, is internalized ableism at work, or simply enough respect for Autistic space to be very averse to risk contaminating it with a false-positive diagnosis by a non-diagnostician? If too quick, is it just plain creepy? No easy answers, as is always the case.

    1. I usually conceptualize the idea of suppressing stims as a form of trauma, rather than a form of internalized ableism, but I guess it's really both. I'm glad you've found someone you can stim around. Being comfortable in your own skin starts in isolation, then with one person. Baby steps lead to bigger steps; sometimes you just keep making baby steps, and that's okay too.

    2. Trauma, I suppose, I always thought in terms of survival strategy, but person on defensive is traumatized person, so yeah

  2. I love the idea of Autistic Space, and I wish I could have it! The closest I get is when I go to a recreation center for people with developmental disabilities, and then everyone is just their true selves and everything (unless it is dangerous to others) is accepted. I too, since learning that I am autistic, have wanted to act "more autistic", by doing the things for myself that I would do for the autistic children I've worked with... using sensory breaks, for example, and weighted objects, to help ease my anxiety, using schedules, etc. And now that I know WHY I stim, I feel happy to just let myself flap when I need to... and it is very uncomfortable for me to be in places like my work, where my stimming and autistic behavior would be frowned upon.

  3. "Autistic space" sounds like a glorious idea. I thrive in the company of pretty much anyone, but there's something special about being around other autistic people.


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