Friday, July 17, 2015

On ASD and Labels and Being Weird

I wrote about this two years ago, and coming across this site on autism stories inspired me to revisit why labels can sometimes be helpful. Sort of. Here's the relevant part of my previous post:
"But here’s another part of the problem: if a student in my class acts differently, and I explain to the class he has Aspergers, then people are generally okay with his behaviour. It’s okay once there’s a label on it. But why can’t we just say, “Hey, that kid says random non-sequiturs all the time. Cool.”? Wouldn’t it be better for everyone if we could be okay with the different behaviour without a label in place. Then we could just accept people immediately instead of waiting to find out if they actually have something legitimate - a real problem rather than…what?…an intentional act of non-conformity to social norms? I guess we want to know whether or not the person can help it – has control over it. But we can all help many of our odd behaviours to an extent when we’re rested and aware and feeling up to it – even many kids with a label."
I've never been officially diagnosed as having ASD, but when my daughter was diagnosed with Aspergers (back when that was a thing), the psychometrist gave me an informal diagnosis of Autism just from the brief visits we had had and a bit of my history - particularly the difficulty with language acquisition.

I think of myself as mainly just weird. I don't quite fit for better or worse, and I often wear my difference proudly, generally embracing weirdness as non-conformity. There's an interesting kind of freedom that comes from being slightly marginalized.  But I also sometimes consider the benefits of wearing an "I have ASD" label on my shirt just for the overt acceptance it might bring.

Even as an adult I run into people who say things like "I remember when I met you, and you seemed so weird." I had thought I had just congratulated her on her pregnancy like a regular person would, but apparently my behaviour was strange - strange enough for her to continue to recount it whenever she introduces me to someone. Once a colleague told me, "I hated you when I first met you" because, even though I felt like I was nodding hello in the halls adequately, apparently it wasn't obvious enough to satisfy his expectations of friendliness. He made me aware that everyone in his department is uncomfortable around me because I'm so unfriendly, so I worked more on my "Hello!" behaviour. More recently, at a party, a woman openly pointed and laughed at my enthusiasm for a song being played, and later a guy drunkenly told me I don't interact with people normally and I better fix that if I want anyone to talk to me again.

Sometimes I take these comments appreciatively as cues to specific behaviours that need work, but other times I just shake my head and go home to read a book. People can be jerks. And they likely don't mean to be mean, right? Just like I don't mean to be a bitch when I don't appear to acknowledge people. We have to give people the benefit of the doubt.

If I don't have at least a beer or two in a social gathering, I will typically remain mute for the duration. I can go weeks without speaking. It's not that I'm shy, but that I'm either bored by chitchat, or I start thinking in depth sparked by anything beyond talk of the weather. I get too internally busy to talk to the people in front of me. I sometimes put on a socializing act, asking people about themselves, which can be even more awkward: "Why do you go around interviewing everyone? That is so weird."

One of these kinds of comments sparked an important revelation about a year ago, when I was listening intently to a woman tell a story. She suddenly turned to me and yelled, "Stop staring at me!" Back in university I actually spent time with a therapist working exclusively on eye-contact (one... two... look away) because my default is to look at the ground. He got as far as getting my chin up, but then sometimes, apparently, I stare. I worry so much about looking at people's faces that I forget that all-important "look away" part! And sometime, I get completely lost in how interesting a person's face can be. REALLY INTERESTING! What was revelatory about this comment was that I think it might finally explain why some people, men and women, think I'm in love with them, making sure to tell me they're married or not a lesbian several times in a single conversation, or hitting on me and refusing to believe me when I say I'm not interested in them that way. They believe my body language over my words - my many, many words to the contrary.

I find that kind of thing fascinating!  But I have to admit it would have been nice to be a little further along at this stage of the game. I would have liked to understand these sorts of things back in my twenties. Alas. But then again maybe it's better that I was very self-accepting. I don't remember things well, so I write down everything. That's just the way it is. I've coped with my idiosyncrasies where possible and laughed at the stuff that can't seem to shift rather than question any of it - until recently.  Last year, on a beach, a friend of a friend badgered me about why I take notes when I read a book. I explained that I can't follow what's going on without keeping notes. But why? I just can't. But why? It's just not my forté. But why? Because I'M DUMB! Geesh!

I can understand complex idea easily but get ridiculously confused by simple instructions. I can hyperfocus on one task until it's completed to perfection, but then I forget to feed my kids dinner. I'm sensitive to anyone marginalized, but also painfully sensitive to any unusual smell or sound to the point that I can't work with people who smoked a cigarette earlier that day. I can scan for information in a text with impressive speed, but I can't recognize my own kid in the hallway at school without scrutinizing people's faces or recognize anybody's car ever. I'm startled by touch and often avoid hugs except with my kids who sit all over me when we watch movies together. I can't do small talk, but any compliment from me isn't flattery; it's a fact. My spices are alphabetical, and my clothes are in the order of the spectrum, but my writing notes and to-do lists are on little scraps of paper all over the house. I show the wrong amount of enthusiasm for things: way too much for music and films I like and not nearly enough when I'm endorsing an idea. One-on-one I can be a great conversationalist, but add in a few more people, and I can't understand the flow of conversation: when to speak and how long after a topic has passed it can still be re-discussed. Can't we just raise our hands to speak everywhere!? When I get lost without a pen and paper to write down the different threads of conversation, I tend to just zone out until someone asks, "Who brought the deadbeat along?" I can type ideas quickly and fluently, but I struggle to say words correctly and often stammer when I speak. I stammer through most lessons in class, and I've never had a student comment on that. Colleagues, neighbours, and other adults I meet are another story.

I'm sure everyone can make a list of the nutty thing they do, but somehow I stand out a bit...more. When I go to environmental events with a group of like-minded people all just meeting for the first time, I sometimes end up alone in the crowd. People will openly walk away from me as I try to talk to them. Adults. Clearly I do something that's a little off, a collection of subtle little things, but I'm not sure quite what they are, and I don't think I'll be able to figure that out well enough to fix it before I die. And, when I do fix things, I end up feeling like I'm fake, acting out a part. It's a bit of a conundrum. And it's hard to remember all these little behaviours to do while I'm trying to think of something to say to someone.

If I wore a shirt that said, "Please ignore my social awkwardness and my inaccurate body language and eye-contact; I have ASD." would it help or hinder? I think it would feel like a crutch, an excuse for my behaviour. To clarify, I never feel awkward, which is likely part of the problem; it's just how other people seem to feel around me, and I'm genuinely remorseful for this effect I have. But many people face these same issues without a label.  David Roberts wrote about his difficulties with small talk and the effort it takes to maintain eye-contact appropriately while making conversation. And far too many people experience rude comments from other adults. Why should I get an out? Why can't we all?

I've gone back to various therapists specifically for social skills training, but they often like to go down the path of "But why do you care if people don't like how you are as long as you like yourself?" Right now we're on a pendulum swing to the side of independence to the point that we're not to be affected by how others react to us. There's something wrong with us if we mind being openly avoided regularly. Curious. It's a similar attitude discussed in this article on resilience as a false solution to poverty:
"What the resilience preachers look for is a person to be unchanged in the face of trauma. But I would argue that this is impossible, that people are always changed by trauma, and furthermore, that we ought to be."
And I respond to that therapy line with the pragmatic: it's difficult to work with people and connect if I'm doing things that put them off. But my response is met with more insistence on a mantra of self-acceptance over change. Maybe it's just too much work for them to figure out either. Acceptance might be good for self-esteem, but it's bad for getting through real-world encounters.

And not making eye-contact with the police, can, according to a video of the police arresting a boy with autism, be a life and death situation. Weird eye-contact makes police suspicious.

We've rallied hard for the world to be accepting of people because of their race, sexual orientation, and gender expression. We're not all the way there yet, and some still think it's reasonable to ask, "What are you?" It will be a great day when everyone can dress as they like and love whomever they desire without having to claim a label to help people understand them or to help them understand themselves. Without a label, those with a more fluid sexuality can change it up regularly without ongoing explanations. I wonder, then, can we try to be a bit more accepting of behaviour differences that aren't always within our conscious control: weird eye-contact, body proximity, gestures, long silences, verbal style...? It's trickier because we count on body language to give us information about people who might be sketchy or dangerous (it doesn't, however, make up 93% of communication). But maybe if we can override our instincts and have a few encounters with suspended judgment, it could pave the way to dismantling the need for acknowledging the ASD label as well - or any other bit of weirdness we encounter.



The Mound of Sound said...

Wow, that was incredibly enlightening. It almost sounds that buried inside all of this is the gift of chaos. You see things differently than most, take in things that others might not and process them differently. There's a price anyone pays for non-conformity and it's often brutal. It must be easy to feel that you're self-ostracizing. Others are held back by their conformity, adapting learned behaviours as their own, seeing things as their tribe sees them. Imagine what they miss.

Marie Snyder said...

I wrote about the freedom that comes with marginalization about a decade ago on a more popular blog I later deleted because of the number of sexually aggressive comments it got: "In the mainstream people have to maintain a very narrow realm of behaviours and attitudes in order to keep their place in the social hierarchy. Those that judge me most harshly, likely judge themselves with the same fervor....I believe it's always fear that drives exclusionary tactics." If we can just jump off that hierarchy, we can live so much more freely.