5:32pm June 9, 2014

Cousins, ACs, autistics and cousins, autistic cousins, etc.

youneedacat:

We used to have a term in the autistic community, we called it ‘cousins’.

It started when Xenia Grant was talking to a guy who had hydrocephalus and had a lot in common with autistic people, but was not autistic. She took a look at him and happily exclaimed, “Cousin!”

(I like to keep track of who coined terms. It can be meaningful. Xenia is the friendliest person I’ve ever met, autistic or nonautistic. That’s the spirit that ‘cousin’ started in.)

Back when NT meant a nonautistic person, another abbreviation cropped, up, AC. AC meant “Autistics and Cousins” and covered autistic people and… cousins. So you’d talk about “ACs and NTs”. But who were cousins?

Cousins were people with a neurological condition other than autism, but it gave them important things in common with autistic people. Especially sensory processing, cognitive, and social traits in common with us.

Cousinhood wasn’t something that was based on a condition. It was based on how that condition worked for a particular person. So while sometimes we’d talk about ‘cousin conditions’, there was no condition where everyone with it was a cousin.

But some common cousin conditions included: Tourette’s, hydrocephalus, OCD, schizophrenia, and AD(H)D. Just as some examples. Not everyone with those conditions was a cousin, but lots of cousins had those conditions or related ones.

The cool thing about cousin was that it dealt with the ambiguity of life. It made it so that it wasn’t just ‘us and them’. There was a broad hazy area around autism where people could be considered in many important ways ‘like us’ without being autistic.

Two people on tumblr that my brain automatically classifies as cousins are karalianne and lichgem. (That’s assuming they’re not unknowingly autistic, of course. Some people think of themselves as cousins but turn out to actually be autistic.) I don’t see them as outside of the circle I draw around ‘autism’ for social purposes, because I draw that circle at the ‘cousin’ level rather than the ‘autism’ level.

I kind of wish that most identities had this ‘cousin’ thing going, because it would resolve a lot of boundaries that people want to be strict and are not. It deals with people who are a lot like a certain type of person, without exactly being that type of person. And it does so in a really friendly and welcoming way.

I know that Tourette’s has a similar but not quite the same idea, called “Tourette’s Plus”. Where the “Plus” conditions are conditions that people with Tourette’s often have in addition, like autism or OCD. Not quite the same idea, but similar.

Eventually people started deciding that the problem with ‘cousin’ was that it made ‘autistic’ the center of the neurodiverse landscape, and that this wasn’t fair. And maybe it wasn’t fair.

But still, I miss the days where you could say “AC” or “Cousin” and people would know what you meant, immediately. And where cousins were considered an actual inside part of the autistic community, not just “allies”. I know there are parts of the autistic community where all of this is still the case. But not nearly as many as there used to be.

So I’m throwing the idea out there just in case anyone likes it as much as I do. It’s not my idea, I didn’t think it up, it existed long before I even knew there was an autistic community (and I go pretty far back compared to a lot of people these days). But I think it’s a useful idea, in some contexts, as long as you do keep in mind that autistic people aren’t the center of neurodiversity.

(But honestly I think if all neurodiverse people used the ‘cousin’ idea in their own communities, then it wouldn’t be about autism-at-the-center anymore it would just be a useful idea for people who are very similar to you in important ways without being quite the same.)

Anyway… Karalianne was talking about how she feels sometimes like she can’t even talk about certain things without qualifying them a lot, because she’s not autistic, and she’s afraid of encroaching. And I remember a time when she was not considered encroaching because everyone knew she was a cousin and that was her place in the community and nobody (that I know of) ever questioned it back then. And it upsets me that this is not the case anymore. Because she totally is one of the first people to spring to mind when I think ‘cousin’.

And I wish that Xenia’s exuberant friendliness would somehow infect the term ‘cousin’ once again, because it needs that push.

I honestly think that the concept of “cousin” is part of why I have no problem with people self-diagnosing, like totally aside from all the practical reasons people don’t get officially diagnosed (and the fact that self-diagnosis is often the first step to formal diagnosis). And it’s why, on the ADHD blog, I tell people that even if they don’t actually have ADHD, they should feel welcome if they identify with the difficulties we have, because maybe some of the tricks ADHDers use will be helpful for them. The blog is for people who actually have ADHD, regardless of whether they’re self-diagnosed or formally diagnosed, but I will never turn people away if they have another thing going on that causes the same problems. Executive dysfunction without ADHD is a thing (like, an actual diagnosis); autistic executive dysfunction is often very similar to ADHD executive dysfunction (that’s how I first learned about it and how to deal with it, after all); anxiety and depression can cause executive dysfunction and attention problems. And so on and so forth. Heck, PTSD and brain damage can cause ADHD symptoms and ADHD meds are often really helpful for those people, so our tricks could be helpful too!

I still remember learning certain social skills via ASA. Everyone there was so welcoming and kind (welll, most people were) and willing to share knowledge and explain why people reacted to things the way they did. It was the first place I really felt like I belonged somewhere - online or offline. (Offline came with the love of the NaNoWriMo participants I started herding back in 2005. The faces have changed but I do feel like I belong in the group when we meet in person, and not just because I’m the “leader.”) I miss usenet just for that.

I think part of the change, for me, is that I did shift my focus over the years. I stopped focusing on autism so much. I started focusing more on ADHD. (That makes sense, of course.) I stopped working with autistic children. My life changed, and I changed, and I lost some of the connection to the community that I once had.

And I understand being wary of someone you don’t know. I faced it a lot when I was actually doing ABA for a living. I am wary of people I don’t know, too. I don’t blame anyone for anything, it’s just how it goes.

I do miss the term “AC” because it is a really helpful term to have. It’s better and more inclusive, I think, than “shadow syndrome.” And it gives people more of a sense of commonality and community and inclusion. It says “there are differences but still a lot of similarities and we can relate on that level and we are family.” (Family in the Lilo & Stitch way I think.)