11:07pm December 14, 2014

You can need people.

When I first encountered the autistic community online, there were two mailing lists by and for autistic people: ANI-L and InLv. I was eventually a member of both but spent most of my time on ANI-L.

Within ANI, there was a trend. You were supposed to be like Donna Williams or Jim Sinclair, possibly also like Temple Grandin. Their traits were to be emulated, traits contrary to them were to be denied, unless, say, Donna had a trait opposite from Jim Sinclair, in which case you could pick and choose which to emulate.

I want to make one thing clear. Donna, Jim, and Temple (Temple had no affiliation with ANI anyway) did not cause this. They did not encourage it. They often firefight discouraged it.

But autistic groupthink is a thing. Don’t let anyone tell you otherwise. And don’t let anyone try and tell you that noticing the groupthink makes you less autistic. Or that not being another Jim, Donna, or Temple does not make you less autistic than any of them. If you see this groupthink going on in your community, resist it in a personal level at least, and write in public about what you see. Chances are other people are feeling the same pressure but are afraid to speak up. Try not to blame whoever it’s in the place of Donna, Jim, or Temple — not unless they actively encourage everyone to be like them.

Anyway, the groupthink made it very hard to figure out who I was, when that was something I desperately needed to do. For one thing, “finding your true self” was part of the let’s all be Donna script. But for another… It went like this:

Donna was the first lesson in the world I encountered who resembled me. I was in luck because penile like me and Donna are a minority in most autistic communities. But I found a close kin in autism types in her. I also had major things in common with Jim Sinclair. Xe had severe sensory issues like mine, things that went well beyond hypersensitivity. Donna had those too. We were all, in addition, people whose functioning labels confused people, even other autistic people whip were not like us in verdant certain ways. One time at a conference, someone nonautistic approached Donna and told her, “I can tell you’re actually quite severely autistic but are using dozens of strategies to compensate and look more functional than you really are.” That statement is not how I would put it, but it’s the same thing that Jim and I also do. Donna and Jim also share with me that we are multiply disabled, that we have autistic catatonia, that we gain and lose and regain skills, etc. There are important differences between us, but those things are the same or similar.

I also have a few things in common with Temple Grandin. Not as many, but a few. Basically she remind me of myself as a child, when I was fighting my real autistic self tooth and nail because I didn’t want to be me. I’d discovered what Donna calls interpretive thought, but it was not my natural way of thinking. Instead of allowing myself to mature into it gracefully (but what preteen has ever done that?) I threw myself into it head-first heading straight for burnout. And when forced to use interpretive thought, my brain jettisoned all of the skills I was truly good at, or at least buried them deeply. The result was, at times, someone who redder resembled Temple a bit: harsh and blunt, literal, black and white thinking, lots of aspie stereotypes. Nobody but the most perceptive could see that under the surface was a bewildered autie with massive comprehension issues who truly had no clue what was happening most of the time. Or even what words meant. So I superficially resembled Temple at times when I was overdoing things. But never as much as I resembled Donna or Jim.

I still remember to this day a vibrating I had with an elder in øur community who along with a couple of others, were trying to mentor me and get me acclimated to being around autistic people. They kept going on about how Autreat would be my First Contact experience with other auties. I protested that my relatives were autistic, that some people in institutions with me were autistic, that some former classmates in mainstream school were undoubtedly autistic, and that half my special school was autistic. I was told these things didn’t count as First Contact experiences because institutionalized autistic people weren’t politicized or self-aware, and I begged to differ again. Being institutionalized or put in segregated education, which often skint to the same thing, can be highly politicizing experiences. We just tended to fight back with tooth and claw rather than words and formalized organizations.

But the conversation. I need to come back to that because it says every thing about how a prominent autistic person can describe something specific to their own experience, and people around them will interpret it as the only way to be truly autistic. So here is what Jim Sinclair said. And for the record I think it’s beautiful. Just not universal. So here’s the quote (bolding mine):

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Sometimes, though, I’m really not interested. I’m not interested in relationships-in-general, or in people-as-groups. I can be very interested in individuals once I’ve met them, but I don’t feel a need to have relationships in the absence of specific people to relate to. During school breaks I can go for days or weeks without any personal contact with other human beings, and I may get bored, but I don’t get lonely. I don’t need social contact. And because I don’t need it, I have no compelling reason to go out of my way to get it. Mere proximity is no reason for me to become emotionally attached to anyone who isn’t interesting to me as a person. Even when someone does attract my interest, when I do become emotionally attached and desire a relationship with that person, I don’t become dependent on the relationship or on the person. I don’t need them.

But wait. Because I don’t need other people in my life, I’m free, as non-autistic people can never be free, to want other people in my life. Because I don’t need relationships with anyone, I’m free to choose a relationship with a someone—not because I need a relationship, but because I like that person. When I make contact with someone, it’s special—and not just because a lot of time and effort have gone into producing a response that’s a pale imitation of normal social responses. Pale imitations of normalcy aren’t worth any of my time and effort at all. When I make a connection it’s special because I don’t have to do it, but I choose to do it. It’s special because I don’t generalize very well from one person to another, so everything I do is intensely focused on just that one person. It’s special because, having no idea of what’s normal and little talent for imitation, I have created something entirely new for that person and that occasion. It’s special because I don’t know how to take people for granted, so when I’m relating to someone, that person is the most important thing in my world for the duration of the contact.

But I don’t stick. That confuses people sometimes. A friend once asked me for assurance that I really wanted to be together. I answered, “I can leave and be just fine, or I can stay and be even better.” Isn’t it enough to be just fine on my own, and to be able to choose connections that will make my life even better? I have exactly as many relationships as I want. I relate only as myself, only in ways that are authentic to me. I value people only as themselves, not for their roles or status, and not because I need someone to fill empty spaces in my life. Are these the severe deficits in communicating and relating that I keep reading about?

[Excerpt from “Bridging the Gaps: An Inside-Out View of Autism (Or, Do You Know What I Don’t Know?)“ Jim Sinclair, 1992. From an anthology by Schopler and Mesibov entitled, High-Functioning Individuals with Autism.Plenum press, 1992.]

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Anyway, one day I was talking to the little social group that was trying to mentor me in the mysterious ways of the autistic community. And I mentioned that I needed people. Needed, was the word I used, not wanted. Immediately, the eldest of the group jumped in and tried to reassure me. She said “It’s okay. You’re allowed to want other people in your life, as long as you don’t really need them.” This response scared me. One, did it mean I wasn’t autistic?. Two, why would anyone take what was clearly a statement of one person’s personal truth, and turn it into a rule that all the Truly Autistic must live by?

Later, I befriended someone who had been around ANI since the beginning or close to it. Sie told me that whenever sie saw an autistic person claim not to need other people, sie knew that this was most likely someone who had tons of support from other people, that they took for granted to such a degree that they weren’t even aware it existed. But that if they lost those social and practical supports, they would rapidly realize how much they did need other people.

But either way. Whether you feel that you could get along fine living as a hermit for the rest of your life, our you wish you were surrounded by ladle who love you, these are both equally valid ways to be autistic. Remember it was not autistic people who came up with the idea that autistic people’s actions meant we were uninterested or unaware of social contact. Like all such guesses, they were right about some of us and wrong about others, and you can’t tell from the outside which is which. The woman who keeps approaching everyone trying to start conversations may only be following her training that has nothing to do with her desires. The man who sits mute and rocking in the corner may be socializing with another mute person across the room through subtle signs others can’t read. Never take for granted that what the experts observe about us is true and untainted by their own biases about social communication. And never take one person’s experiences as the way to be a Real Autistic.

This stuff was even more confusing to me because in many ways I genuinely resemble Donna and Jim. So when I ran into something we didn’t have in common, coupled with the groupthink within ANI at the time, it made me feel as if I had to claim that trait as my own, which in turn made me feel inauthentic and unable to tell where the real similarities ended and the differences began.

I’ve seen people do this sort of thing regarding me as well. So a blanket pronouncement tho anyone who’s gotten stuck in this: Being autistic doesn’t mean you have to be highly sensing, have severe receptive language delays, have autistic catatonia, have synesthesia, communicate with objects and see them as alive, or any other trait I happen to have. Each of us is different — even Anne and I have significant differences — and that is a good thing.

Also remember that there are many ways to meet the diagnostic criteria for autism: Personality type. Language processing issues. Sensory issues. Movement issues (both internal and external). Cognitive differences. Physical illnesses. Narrow attention. And many more. You can meet the entire criteria with just one of those things, though that is rare. Most people have a combination. And that’s why we are so diverse. And diversity among autistic purple is not a bad thing. Never let anyone, yourself included, pressure you into feeling like you have to resemble specific autistic people to be truly autistic.

TL;DR: Autistic people are allowed to need social contact. And not just “aspies”. And you don’t need to measure yourself against well known autistic people to determine if you’re autistic or not. You can differ from them and be just as autistic as they are.