Culture and Community

I attended a conference last Friday put together by Autism Connections, an autism services provider based in western Massachusetts. The event was organized around two keynote speakers, Steve Silberman and Al Condeluci. I may write more about the conference itself later, but for now I just want to pull out two strands of the discussion that have been intertwining themselves in my head ever since. They have to do with culture and community.

Steve Silberman, the author of the influential book NeuroTribes, The Legacy of Autism and the Future of Neurodiversity, gave a two-part talk about the history and the future of autism—or I should say, the history and future of how autism has been identified and defined. As is reflected in his book, he advocated moving from a pathologizing medical model of autism and toward a more inclusive, neurodiversity-informed model, and during the “future” part of his talk he spoke a bit about the development of autistic culture.

One thing that stood out to me during this part of his speech was his experience attending Autreat (a retreat put on by autistic people for autistic people) as a neurotypical. He said that by the end, he had acclimated to autistic culture to the point that the NT world seemed very harsh by comparison. Listening to him, I was reminded of how much I have really longed to be able to attend something like Autreat, to experience that kind of autistic-friendly environment for myself. I feel like it could hit a sort of “reset button” inside me, to counteract some of the acclimation I have had to do to navigate NT culture.

The second speaker was Al Condeluci, who has done a lot of work related to supporting people with disabilities and creating ways to increase community involvement. In his talk, he spoke a lot about building social relationships that include people with different disabilities, rather than excluding them and isolating them in institutions or special programs. He pointed out that relationships are built on similarities—we seek to bridge the differences between us and find commonalities in order to relate to one another—after which we can begin to appreciate our differences.

At one point, Al talked about the process of helping someone build relationships in the community by seeking out groups that share common interests. He used the example of someone with Down syndrome who enjoys photography, and said that instead of looking for (or creating) a photography-focused social group for people with Down syndrome, it would be better to find a photography-focused social group for everyone, and introduce the photographer with Down syndrome to it in a way that made it accessible and welcoming for her. This not only allows this particular individual to build relationships within the broader population, it also increases visibility for people with disabilities instead of isolating and segregating them, as often happens.

Now, as part of a writing project I’ve been doing, I’ve been reading a lot about the Contact Hypothesis, which essentially states that positive contact between groups can (if done correctly) reduce intergroup prejudice and anxiety. There is a lot of research backing this up, and it’s one reason why it’s important to me to speak openly about being autistic. If people don’t know any autistic people—or don’t know they know any autistic people—it may be easier for them to buy into various stereotypes about us. So I am fully on board with increased inclusion and visibility for autistic people and people with all sorts of other differences and disabilities in society.

But the thing is, we also need our own spaces. This is where these two strands of thought become tangled for me. I do believe that building a more inclusive society requires more inclusive involvement, and it is clear that greater contact with minority groups can really change attitudes. (This has been studied with regard to racial, ethnic, and sexual minorities, and probably others.) But events like Autreat, or even just small get-togethers among just autistic people, can serve as a powerful reinforcement that, as a minority, our ways of being and interacting are just as valid as others.

I also think it’s important to keep in mind that, when it comes to approaches people use to reduce ingroup/outgroup tensions, members of the majority (or otherwise dominant) group tend to prefer it when everyone becomes subsumed into a single, more-encompassing ingroup—in other words, when “us” and “them” become a unified “we.” It’s sometimes called “recategorization,” but another common word for it is “assimilation.” This approach de-emphasizes everyone’s differences and, at least rhetorically, insists that we are all the same because we are on the same team; you’ve probably seen this done with appeals to a national identity to unify different ethnic subgroups.

Members of minority groups, however, tend to prefer it when integration into a single group is done in a way that allows for each subgroup’s individual differences to be preserved. Working together on the same team is still valued, but instead of “the team” being seen as one big, homogeneous group defined solely by team membership, people are seen as having dual membership in the team and their particular subgroup. (And in reality, we all have multiple group memberships that overlap and intersect, but for now I’m trying to simplify.)

So this is how I see the resolution of the issue I’ve outlined above: I want autistic people to be visible and included (and appreciated) in the larger society, and I want us to have our own spaces where we’re not constantly pressured to accommodate the expectations of neurotypical communication. Because right now, if we want to be included, we have to make those accommodations, and I don’t see that changing anytime soon.

Reference: Intergroup Contact: The Past, Present, and the Future

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Reading People (Or Not)

Sometimes I just have to let things go. I find myself going over and over something I’ve said, second-guessing my own reactions and wondering if I’ve inadvertently said something wrong, pissed someone off, hurt someone’s feelings…but I’m not going to figure that out by rehashing it over and over. Either they’re going to tell me so, or not.

The trouble is, people often don’t tell me one way or the other, and therein lies the problem. I can’t help it if people don’t tell the truth about their own reactions, and I can’t be expected to just know. It’s been pretty well established that people with vastly different ways of thinking and experiencing the world have trouble seeing each others’ perspective—we think differently, so…we think differently. Damian Milton calls it the “double empathy problem,” and points out that it’s not a one-sided autistic “deficit,” but rather a mutual disconnect in our understanding of each other.

And I definitely know that my reactions to things have been misunderstood with great frequency throughout my life. I’ve been called selfish while I was actually bending over backward to make someone else more comfortable, and I’ve been called thoughtless when I was actually consumed with concern for someone else. That’s one of the reasons I worry so much about people’s reactions when I say something that might make them uncomfortable, or need to ask for something to change. I have no idea if they’re understanding me, or if they’re reading something into my words that isn’t there.

One problem is that I can’t really trust how I read people, so before I say something that might potentially be taken negatively, I have to prepare for all sorts of reactions. I kind of have to assume the worst, to be honest, just so I don’t get blindsided if and when they jump down my throat. (In my defense, I have also correctly predicted reactions that were all out of proportion to the situation, even when others told me that I was worrying too much, and of course that person won’t react that way. But those were situations where the person in question had previously overreacted and taken things personally, so I had already seen that pattern play out. It’s interaction with less-familiar people that sends me into a tailspin of self-doubt.)

My therapist noted this week that I seem to have problems “owning” my negative reactions to things, and she’s right. It came up toward the end of our session, so we haven’t had a lot of time yet to pick that apart, but a great deal of it is due to all of the above: expressing a negative reaction to things, even a mild one, has so often been punished that I do so only warily. Either it’s misinterpreted as a personal attack, or taken as me asking for special treatment instead of “sucking it up” and getting on with things. And so I’ve learned to be extremely diplomatic in my approach…but I still end up with no idea what the response will be, even when I think I’m being completely reasonable.

At least I can usually recognize what is reasonable and what isn’t, both in terms of my request or statement and in terms of the other person’s reaction. And I get righteously indignant when people react unreasonably. But that still leaves me feeling bruised and vulnerable, and wanting to crawl back into my shell and not engage in situations where I might need to speak up. Because that’s the tension I feel all the time: I can’t not speak up when something is unreasonably uncomfortable or unfair, but I hate speaking up to point those things out.

But you know? The times that I have spoken up, usually about things that other people were silently putting up with, I have always had at least one other person—and usually more—tell me that they appreciated that I said something, because it bothered them, too. I just wish they would take the initiative once in a while, because it sucks always being the one to reach a breaking point first. But I suppose our social and sensory sensitivities make that almost inevitable, like being the canary in the coal mine. The situation is toxic for everyone, but autistic folks are going to feel it first.

Anti-Social Media

I have something of a love-hate relationship with social media. I mean, it’s got the word “social” right there in the name, so that’s probably no surprise. I do use it, but I tend to use it in very specific ways, depending on the platform.

Twitter: I have a few different accounts on Twitter, which I use to organize various streams of information. The one I use in connection with this blog, for example, is pretty much “all autism, all the time.” This is the primary one I post to, while the others are mainly for informational purposes.

I’ve been engaging with it less lately, however. I find Twitter to be both valuable and problematic; the short format makes it easy to skim posts to find things of interest, but it also does something…scattering to my brain. The short format also seems to lend itself to statements that are absolute and unequivocal, which tend to rub me the wrong way. Overall I tend to come away from it feeling on edge, if not outright pissed off.

Instagram: I use this to share my photography, and to follow other people’s photos from around the world. I follow both people I know and people I don’t on this one; if you follow me and your postings look interesting, I will follow you back. If you’re posting all selfies and pictures of food, I probably won’t.

Pinterest: Honestly, I don’t really use Pinterest in a “social” way at all. I use it to unwind and look at beautiful pictures related to several of my many and varied interests. I save images of potential craft projects, as well as pictures related to nature, animals, and geekiness. I think I’ve followed one person I know on there; otherwise I use this to connect with images and ideas, not with people.

Facebook: I use Facebook primarily with people I know. It allows me to keep in touch with relatives and friends in a way that I otherwise wouldn’t, given my aversion to frequent gatherings and dislike of phone calls. It’s ironic, though, because on the one hand this is the platform where I connect with people who actually know me in person, but on the other hand, it’s also the one where I feel the most constrained when it comes to sharing my opinions and activities. I have learned over the years that I DO NOT like long comment-conversations on Facebook, even if they are positive and not contentious. (If they are contentious, I will literally lose sleep due to stress.) And frankly, I have never seen a Facebook conversation actually sway someone’s opinion. I’m sure it happens, somehow somewhere, but I have only ever seen people dig in their heels, or just ignore the arguments presented.

And here is where I have a huge peeve with social media. It is true that many of these platforms are perfect for sharing one’s views on current events, and for helping to motivate activism. But that is not how all of us use them (or we might use some platforms this way, but not others). It annoys me to no end when I see people taking others to task for not posting about this or that thing, or equating “not posting” with “not caring.” What I always want to shout back at them is, “Not posting about it here does not mean I am not a) talking about it elsewhere, b) deeply concerned about it, and/or c) actually taking concrete action about that thing.”

So…I don’t know. I have thought several times about disconnecting from social media altogether, but I keep having second (and third, and fourth) thoughts. I really do feel the need to reach out to people sometimes, to share things going on in my life and see what’s going on in theirs. But I also know that it stresses me out, and it’s often just a distraction when I want to be focused on something else. And then there are the privacy issues, media manipulation, and deliberately-addictive qualities of social media outlets that are just flat-out problematic. Am I talking myself into quitting them now? Maybe. Let me go see what my Facebook friends think.

Keeping My Cool

Snow-covered hemlock trees with the morning sun behind them

I hate conflict. Really, seriously dislike it. I always end up feeling terrible after (and during) an argument, even if I feel that I was completely in the right. Part of it is that I always do want to consider other perspectives; I want to be fair, and hear the other side out. But what this feels like internally is this: I absorb the other person’s viewpoint, and really take in what they’re saying. It can even feel like I am adopting their point of view, “trying it on” to see if it makes sense to me. But then I end up getting defensive, because it feels like my own perspective is being overwritten, and I’m afraid of losing my own viewpoint. I feel like I have to claw my way back to my own thoughts and feelings, and that can be scary.

On top of that, I generally don’t feel like the other person is doing the same thing, so I end up feeling like I am losing ground, wavering in my conviction by even pausing to consider the other point of view. But I really do think this ability to take on other perspectives, to suspend judgment for a moment and really try to see where they’re coming from, is a strength, and that society would be a lot better off if more people did this. So it’s not that I want to close myself off and stay dogmatically attached to my own opinions — but I do want to avoid that feeling of defensiveness that arises.

What I try to come back to is this: people are free to disagree with me, and I am free to disagree with them. I don’t need to convince everyone to agree with me, and in the end it’s not possible to get everyone to agree on everything. This is freeing to remember, and allows me to step back from seeing an argument as a battle that can be won or lost, and instead think of it as an interaction that might show me something interesting.

I’m not always able to remember this, but when I do, it calms me down immensely. I am not responsible for single-handedly “fixing” the world, or for changing everyone’s minds. Even when the issue is something I consider extremely important, even vital for people’s well-being, this is still the case. Often it’s just not the time or place for a particular argument to be accepted, but I also know that very often people hear and dismiss things that they later come back and reconsider. So maybe I’m planting a seed that will bear fruit later — I may never know. The only thing I can control is how well I make my case; whether that changes the other person’s mind is up to them.

Interpreting Regulations

When I was in Air Force ROTC in college, we had a month-long training period in the summer between sophomore and junior year, called Field Training. This was roughly our equivalent to boot camp, so it was a fairly harsh environment with a lot of demanding activities and constant scrutiny and evaluation. Strict adherence to regulations was expected.

At the time I went to Field Training, I had very short hair, similar to how I wear it now. This allowed me to stay within regulations without a lot of fuss; if I’d had long hair, I would have had to braid or otherwise bind it so that it stayed above my collar, and given how little time we sometimes had to get ready in the morning, it was nice not to have to worry about that. But somehow I still got into trouble for it.

Now, the regulations around women’s hair are different than those for men, even beyond the fact that women are allowed to have long hair in the first place. Men’s hair has to be trimmed to stay above the top of the shirt collar, whereas women’s hair only has to remain above the bottom of the collar. That’s only about an inch of difference, but it matters when you have a lot of hair that you’re trying to keep up in a braid or a bun.

But I didn’t have to worry about that, right? My hair was trimmed right to the hairline in back, so I didn’t give much thought to keeping it off my collar; it just was off my collar. Or so I thought.

The cadets in Field Training were divided into flights; two flights made a squadron, and all the squadrons combined into a group. (This mirrors the organizational structure of the US Air Force as a whole.) There were cadet officer positions within each of these levels, most of which rotated to give everyone experience with command, but each level was also commanded by an actual commissioned officer who was supposed to provide guidance and discipline while overseeing our training. My flight commander was a woman whose name I can’t quite remember, so I’ll call her Captain Jones.

Capt Jones had short hair, too, although she kept hers longer on top than I did. I recall it as one of those wedge-shaped hairdos with longer, wavy hair on top, and very closely trimmed sides and back beneath. In any case, about two weeks into Field Training, she pulled me aside and told me I had to get my hair trimmed because it was touching my collar. “It still counts if it’s touching the inside of your collar,” she said. “It has to be above the collar, period.”

Now, this was patently false, as I’ve explained above. But there is a far-reaching commandment in the military: thou shalt not interpret the regulations to a superior officer. This includes quoting a relevant regulation to argue with someone senior to you, as well as quibbling with their interpretation of the same. It is considered insubordinate and disrespectful, as well as a form of making excuses.

I really hated this prohibition. If someone was wrong about something, it shouldn’t matter whether they were above me in rank or not: I should be able to (politely, of course!) point out their error to clear things up. Both my memory and my attention to detail were exceptionally strong, and since I worked very hard to make sure I learned all of the rules, I typically knew the regs that applied to me inside and out. So when someone else got them wrong, or (worse) accused me of getting them wrong when I knew I hadn’t, I wanted to be able to correct them. It was a matter of fairness to me, as well as accuracy; if I was actually getting something wrong, that was one thing, but being told I was wrong when I wasn’t was another thing entirely.

So biting my tongue was always hard, but it was frequently expected during my time in the military; strict hierarchies tend to require that. I did find ways to raise issues, however, and it’s a skill that has benefited me in the rest of my life as well. I’ll call it the Question That Isn’t a Question (QTIQ). In Capt Jones’ case, it went something like this:

“I’m sorry, ma’am,” I told her. “Was I wrong that it just has to be above the bottom of the collar?”

See, by phrasing things this way, I can bring up my understanding of the issue in a way that’s not confrontational. The hope is that this will jog the other person’s memory that, oh yes, that is the case, or at least open the door to further discussion that might lead to actually looking things up for clarification. It’s not really a question, because I already know the answer, but it allows me to challenge factual errors that I could not otherwise correct due to power imbalances. It might make me sound like I’m uncertain or timid, but I’ve been in enough situations where I really had to avoid pissing off powerful people, and it has worked well for that.

In this case, unfortunately, it didn’t work to change the situation. Capt Jones informed me that, yes, I was wrong, and I needed to go get my hair cut asap. So there was nothing else to do but say “yes, ma’am,” and try to figure out where the hell the barber was.

But she was still wrong.

Putting In The Effort

I’ve written before about how much I’ve been enjoying my sociology class, and that enjoyment has continued as the semester has progressed. There are only three weeks left of classes, and while I’m looking forward to having a break, I’m going to miss this one. The readings were well chosen, and we’ve had some great discussions about them.

I haven’t liked my psychology class as much, but I attribute that primarily to the structure of it as an online class, and to frustrations with the textbook. It’s also a little too basic, given my earlier familiarity with a lot of the material; a psych class in high school got me hooked on learning about how humans work, and it’s been a fascination for me ever since.

That’s mostly because explicitly learning about this stuff has really helped explain so many things that didn’t make sense to me intuitively. I feel like I’ve always been something of a social scientist, making observations, forming hypotheses, and testing out different approaches. Other autistic people have expressed similar feelings; perhaps the most famous is Temple Grandin’s description of herself as being “an anthropologist on Mars,” trying to figure people out. Many of us analyze our every interaction, looking to crack the code.

The thing that strikes me most about that right now is how much effort we put into this whole human interaction thing. And it really is a ton of effort: the amount of processing that goes into even casual social interactions can be exhausting, and the mental strain that results is often a big factor in autistic burnout. Plus the time it takes to get things “right” can easily lead to social anxiety, as the cumulative weight of failed interactions starts to add up.

So why is there still a pervasive stereotype that says autistic people are not interested in social interaction? Certainly, some of us aren’t; we’re a varied bunch, after all. But as a generalization, it falls far short of the reality, and I think the sheer volume of effort we put into every interaction gives an indication of how short it falls. And given that some new research shows that neurotypical people are less interested in interacting with autistic people based on superficial first impressions and social judgments, it’s past time we stopped placing all the blame for social difficulties on the autistic side of the interaction. We are putting in the effort. I think we should get some credit for that.

Mixed Messages

When I was young, I received constant messages that I didn’t belong. I was weird, and I said things others didn’t understand, largely because I was making intuitive leaps that they couldn’t follow, or because I was working off of detailed information they didn’t have. I didn’t grasp that at the time, of course. I mean, I was a little kid and they were grownups — of course grownups would know more than I did! But when it came to my interests, they often didn’t. They weren’t the ones spending long afternoons reading the encyclopedia, after all.

Perhaps because of things like this, I also began receiving messages that I was gifted. I was praised for being very smart, and for picking things up faster than other kids did. I was admonished for getting impatient with other people, and told that not everyone could learn as quickly as I did, or remember as much, or connect as many dots. Essentially, I was told that I couldn’t expect everyone else to keep up with me.

So I started trying to incorporate this perspective into my understanding of the world. Instead of assuming other people had all of the knowledge I did, I would share some of what I knew as part of making my point. For this, I was called a know-it-all. When someone asked me if a math test had been easy, I would say it had been easy for me but I didn’t know how it was for other people. For this, I was told I was conceited and that I shouldn’t act superior.

I’m sure I did come off as pedantic at times, especially before I learned how to moderate the level of detail I included in conversation. Most of the time I was just excited to talk about something cool I had learned. And I know lots of people saw me as aloof, maybe even condescending, but the truth was I felt anything but superior. There was still that constant drumbeat of judgment, telling me I was weird and wrong and no one could understand me. But trying to acknowledge that I wasn’t like other kids never seemed to help, so I learned to stop even hinting that I was anything special.

BUT.

All through my life, right up to today, when I try to generalize from my own experiences to suggest what other people might need or want or enjoy…I am told that I’m an exception, that most people are not like me. This happened just a couple of weeks ago, and it’s happened my entire adult life. If I act like I’m different, I’m being egotistical. But if I assume I’m the same, I have unrealistic expectations of other people.

Has anyone else out there experienced these kinds of mixed messages?