1:32am October 4, 2014

Inverted assumptions about social connectedness.

Note: This is clipped out of a much longer post that got killed somewhere along the way by tumblr. An important, longer post, and this was the least important part. Also note that I don’t hold anyone responsible for assumptions they made about me or my brother as kids. We were kids. It was a long time ago. Nobody knew anything about autism. We weren’t even diagnosed yet. You can’t be blamed for what you don’t know.

This is something that has caused a lot of confusion over the years with me and my brother. I am very passive and likely to go along with things I don’t like, which allows those around me the fantasy world that says that I like things they want me to like just because I go along with them. My brother is, for instance, very loving and affectionate, but he spent his first several years “treating people like furniture” and screaming when “given affection”, because of his sensory defensiveness.

So I was less loving as a young child than he was, but was considered more loving because I would tolerate touch and even meld my body into my parents when held. Which is actually as strong a sign of autism as arching your back and pulling away when held, it’s been in the literature since at least the seventies. And it does not indicate any more, or less, affection, than stiffening when held. Both are sensory-motor responses and don’t indicate anything in either direction about degree of affection at all.

It’s not that I wasn’t affectionate at all, mind you. I was just less affectionate than he was. But I looked more affectionate because I was passive and did the melding-body-into-body thing and liked my stuffed animals sometimes (although not for the reasons people suspected). I can distinctly remember a time period when I didn’t understand affection at all – and even then, I was still attached to my parents and had nightmares about my mother going away and never seeing them again. They’ve since done studies showing autistic children are as attached to our parents overall as nonautistic children, showing the same amount of distress when parents have left the room. We just don’t always show the distress in the same ways.

One way I showed that distress was in a lesser ability to tolerate social situations without my mother around. In preschool, they called her in because I was playing by myself and shrieking a high-pitched cry any time another child got near me. My mother came in and saw me wiggling my fingers. She already had 20 years of raising an autistic child by that point, so she knew what to do: She wiggled her fingers right back at me. Wiggling our fingers at each other has become a lifelong signal of affection for each other. We can do it across a room without looking directly at each other at all. So much for stimming being “meaningless” – and it is true that when parents join in with their kids’ stimming, the autistic kids become much more receptive to the parents’ affection, because the parents have shown willingness to join us in “our world”, for lack of a better term. Anyway, as long as my mother was there to wiggle my fingers at, I did not scream, because I felt with my mother around I was safe. It was only when she was gone that I shrieked when approached by other kids.

Which should tell you a lot about the attachment autistic people do and don’t have for our parents. I think it did take me a little longer than most kids (including possibly most autistic kids) to learn affection for my family, but I certainly had attachment from an early age, just like pretty much all autistic people do. This is why the criteria of a total lack of social involvement with others was taken out of the autism criteria by 1987 (it had been in the first criteria in 1980): No autistic children actually fit that criteria. We only looked, to an untrained eye, like we did, because our displays of affection and attachment were atypical.

Which is why I’ve always wondered, if affection and attachment are normal in autistic children, why was it that it took me longer than average to develop affection for my family? And I mean, not from an outside perspective of “this person looks affectionate”, but from an inside perspective of “I feel affection”. I almost want to blame extremely severe sensory issues and cognitive delays that made my view of the world very unstable and confusing. I even believed at one point… I want to say “when I was three” but I really mean that period between ages 2 and 5 that I always refer to as “When I was three”… that I had two families and that my brother was the only one who could take me between them. Nobody told me this, it was because he took me around the block in a wagon and came back to our house. I didn’t understand we went in a circle.

I think lack of understanding of things like that could have contributed to my (comparative) lack of affection early in life. I remember so much more about things than about people, because people were blurs that didn’t sit still, and things stayed put. I had a lot of affection for things, I think.

I think it’s interesting though that as usual the misconceptions about autistic children can go two ways: Those of us who are socially passive (we are an extreme minority, according to Lorna Wing) are likely to get seen as affectionate because we tolerate approach by other people, and people fill in the blanks with what they want to see. We may in fact be very affectionate. Or we may not be affectionate at all. You just can’t tell from our social behavior, because it’s all triggered and learned responses, in response to other people’s initiation. Those of us who are aloof (as my brother was at an early age, and as I was and remain sometimes situationally when I’m not passive) get seen as unaffectionate even if we are overflowing with love. And those of us who are active-but-odd (or actively odd, as some autistic people prefer) are most likely to be seen as affectionate because they’re doing the initiating. (I have my actively odd moments but they’re rare.)

For whatever it’s worth, I’ve always been predominantly passive, with some aloof thrown in and some occasional actively odd (especially around puberty, when I temporarily turned into Luna Lovegood) for good measure. My brother has always been predominantly actively odd, but he started off aloof, and he’s got elements of formal/stilted. I know a lot of people don’t like these categories. I think they’re useful for describing different social approaches, as long as you understand that a person can be more than one of them at different times.

I’ve found that being socially passive means that people can project whatever they want, onto me. If they want me to be social and loving and affectionate, then they will focus on the times when I have been approached by people and show responses that seem to indicate being social, loving, and affectionate. If they want me to be socially indifferent, they focus on the times when I am not being approached and am not able (or, they believe, willing) to approach anyone else, either. None of it has anything to do with me. It all has to do with who people want or expect me to be.

I have found the same problem when I am socially aloof. Aloof is where you act like you don’t understand that anyone is there, or you may even scream when someone approaches you too closely. It’s what most people think of when they think of autism, even though by far not all autistic people have a predominantly aloof social pattern.

I’ve found that when I’m aloof, there’s the assumption that I don’t want to interact. And that if I wanted to interact, I would interact. The idea of a severe initiation difficulty does not cross people’s minds. The idea of severe sensory issues making closeness to people intolerable doesn’t cross people’s minds.

But I’m not usually aloof. Aloof requires the ability to escape interaction. I rarely have that ability. I can mostly neither escape nor initiate interaction, both of which require a skill I don’t usually have. That’s why I think the social category of passive is so important: It’s different from the others. The others require actions on the part of the autistic person. Passivity requires only reactions, if that. It requires going along with the social interaction you’re being pulled into. And I don’t think it’s any coincidence at all that it’s linked to autistic catatonia, a condition involving the same difficulties, only in motor areas not just social ones.

Please understand I don’t blame anyone for seeing what they wanted to see. This was 30-50 years ago we’re talking about. Autism wasn’t on the radar of the layperson. Much less concepts like aloof, passive, actively odd, and formal/stilted social patterns. It was assumed that autistic people had no desire for interaction, and in fact that we never interacted at all or showed the slightest sign of sociability (which is contradicted strongly by later research). So it was normal for people — all people — to make the assumptions they made about my brother and me. I just think it’s interesting that my brother and me were so inverted: The way they saw him was closer to my internal reality, the way they saw me was closer to his internal reality.

TL;DR: My brother was a very affectionate autistic kid who was seen as “in his own world” and “treating people like furniture” and “not knowing people existed” because of his sensory defensiveness and aloof social pattern in early childhood (before he shifted into actively odd with a vengeance). I took much longer to develop affection towards my family (although I had perfectly normal attachment, just as my brother and pretty much all autistic kids do), because of severe sensory scrambling and other things that made it hard for me to fit together who people were and that kind of thing. But because I was socially passive and not sensory-defensive generally, people assumed I was very affectionate. When you’re socially passive, people project onto you whatever they expect to see, or whatever they want to see, whichever comes first and loudest. Be careful what you assume about an autistic kid – you may not be seeing their true feelings, you may just be seeing your nonautistic interpretation of what your feelings would be if you were acting like they are acting right now.

Oh and if you’re wondering? Both my brother and I love our families dearly now, and you couldn’t compare one love to the other at all. I’m only talking about early childhood development here, before I was capable of a sense of “me AND you” that’s necessary for certain kinds of affection.