Useful Tigress Blog

A better world is possible, and we can make it real.

Cousinhood in Neurodivergent Communities 

The concept of “cousins” in the context of neurodivergence recently crossed my scope a while back, and I gotta say I’m really fond of it. It’s a very good concept in general; it coaxes us away from absolutism into a sort of friendly flexibility. This is a considerable virtue when it comes to neurodivergence — it reminds us that in a domain with so much uncertainty, we will often do better by seeking to be compassionate to each other than by seeking to discover the immutable eternal rules of things. Very seldom in life do such rules exist anyhow.

Here’s an excerpt of that piece that I want to talk about:

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. […] 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.

For several years, I had an itch in my brainstem about my brain and autism. A wordless suspicion. I didn’t talk about it, because it was just an intuition, and it didn’t fit all the evidence. But I had to guerrilla-teach myself a lot of conventional social skills, I have sensory processing issues, and I have compulsions, lurking tics, stimming. Two or three times I brought it up to people whose judgment I trusted and who were themselves autistic. They laughed at me. It hurt, a lot. Why? Eventually I found out more about the symptom-constellation of ADHD and, coincidentally, read about the “cousins” idea at about the same time. Those two ideas clicked together very helpfully. My friends were right to tell me, “Krinn, it is really really deeply unlikely that autism is what’s going on in your brain.” But my lived experiences were getting dismissed, which is always a shitty experience. So that’s why it hurt. It was interesting to look back and see that condense into a dualform experience of being right and wrong at the same time.

The idea of “cousins” is helping me by giving me a way to conceptualize me over here dealing with my ADHD neurodivergence as part of a loose network of neurodivergences with buzzing probability-clusters of common experience. I am not aware of whatever community of folks with ADHD is out there, and my social graph skews pretty heavily towards autism-spectrum issues. I’d be surprised if there was no community out there, though. One of the interesting things about neurodivergence is this sense that it’s possible to have community around these ways of experiencing the world. These are ways that are basically peers to the neurotypical experience, ways of existing that are just as capable of leading to a happy, healthy, self-actualizing life as neurotypicality. So there are communities of people out there articulating this experience, to themselves and each other and to people who don’t share the experience. This is great!

This is also a contrast to depression, which is also something going on in my brain. I don’t think of my depression as neurodivergence. It’s not another valid way of experiencing the world. It just sucks. A central point of neurodivergence activism is “hey, don’t try to cure us: we’re having a valid experience of the world here, we don’t need or want curing.” That’s a statement I couldn’t make about depression, ever. If I could just tear out the part of my brain responsible for depression and throw it in the river, I’d do it in a hot second. It is just random awfulness shoved into my brain.1 I suspect my experience of depression is average in this regard.

The opening sentence of Anna Karenina is one of the ways I think about depression. “All happy families are alike; each unhappy family is unhappy in its own way.” It’s not so much that depression convinces you that happy people are all alike, but rather, it convinces you that you are uniquely unhappy. You are uniquely terrible, it tells you. You are alone. You deserve it. The commonplace that depression is a liar, is true, but a little misleading. Depression doesn’t so often tell you big lurid whoppers — that’s more the domain of panic and anxiety disorders. Depression is good at lying. It also has the advantage of playing both sides: you start to want to believe these horrible things about yourself. You can construct an ironclad case against your own happiness. It feels so reasonable. Everyone is, in fact, special and unique and amazing. It’s just that in your case, depression tells you, you are special and unique and amazing in how horrible and unworthy of love you are.

Depression is more like autoimmune diseases than it is to, for example, a flu. You don’t just “get better.” What depression and autoimmune diseases have in common is that their presence, their main symptoms, prevent you from doing the things you’d need to do to get better. If you don’t know that depression/autoimmune disease is what’s going on with you, it looks like things are just petulantly & persistently failing to work, falling apart. It looks like you’re just broken in some mysterious way that you can’t fix. But these things are actually failing because of a disorder one meta-layer away. Being able to see that that’s what’s going on doesn’t fix things. It does, however, make it possible to cope with things. “Cope with things” is what’s on offer. There is no way to just fix the things going wrong — there’s no panacea, just a bag of coping tactics. It’s a big bag, which is good, because for any given person only maybe half of the tactics work and you don’t know which ones until you try them.

My experience of depression is that it has non-consensually taught me the skill of looking other people in the eye while I have a sucking chest wound in my emotional/internal/personal life and saying —

“Nah, I’m fine. I’ll walk it off. Not nearly as bad as it looks.”

“Krinn… you’re coughing up blood while you’re speaking and it’s dripping from your chin.”

“I’m fine.”

“Krinn, I can see past your goddamn ribs.

“I. Am. Fine.”

“Krinn. Are you sure you don’t want help?”

“It is okay to not help me.”

On bad days you think of suicide not so much because you want to die as because you feel dead already. The world passes you by. You do not matter. You are forgotten. There is no malice in it — you don’t have enough entitativity to hate. People are simply going on with their lives – nice, clean, livable, tolerable lives. There is no particular reason for these lives to include you.

It’s a lot easier, in some ways, to think about my experience of ADHD. It has many unpleasant parts, but it’s in that class of things that are “just” an alternate way of experiencing the world. There’s also the luxury of having a small cluster of effective life-easing drugs with hit rates in the 90+% region. Drugs for depression never get better than “cautiously optimistic” odds. You can tell if Adderall helps in maybe a week, two tops. If you want to figure out if some SSRI works for you, you’re looking at more like two months to ramp up, figure out if it’s working, and to taper off safely if it’s not, which you will have to do before you can try something else. There’s plenty of room to talk about the complicated results of medicalizing brain shapes, of declaring some brains to be “disordered” in their unmedicated state. The DSM is first and foremost a political document, after all. But the advantage of having psychiatric drugs, ones that mediate your experience of the world in a sustainable way, is that you can figure out for yourself whether your life is more livable with or without them.

Which brings me back to cousins. Life is generally more livable when you’re around people who get you, who share some significant commonalities with you, who affirm your way of experiencing the world. The concept of “cousins” permits us to bring more such people into our lives. As such, I think it’s definitely a Good Thing. I think it’s also useful in the case of depression and related shitty things that can happen to brains. If I acknowlege, say, people with chronic pain/fatigue syndromes as “cousins” in this sense, I at least have more people I can talk to about the shitty experiences I’m having, and who are living through their own similar ones. We are more trying to survive our things for as long as we can deal with, rather than affirm them, but having company still improves things.

Live, as Vonnegut says, by the illusions that make you brave and kind and healthy and happy.

  1. One of the grim jokes I make is that if my depression has a purpose in life, it’s to make me much more fond of my ADHD-ness and my trans-ness. They’re so much more tractable!