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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Meeting People

Last Wednesday, I participated in a panel discussion at my community college for autistic students. Well, it was a panel of autistic students, but I suppose it was mostly held for the edification of faculty, staff, and other students. The questions related to our experiences in school on various levels: the physical and sensory environment, the social environment, academic expectations, etc. There were five of us on the panel, and our answers (and our communication styles) reflected a lot of the diversity of “the spectrum,” though of course not all of it.

One of my professors was in attendance, and we had a great discussion about the panel in one of my classes the next day. When he asked me what I had thought about the panel, I answered truthfully that the biggest thing I had gotten out of it was the chance to meet the other panelists! I really enjoy meeting other autistic people. We’re not all going to hit it off, of course, but there is usually a nice familiarity—at least on some level—that I’m not used to feeling with those of the predominant neurotype. And from talking to the other people on the panel, I clearly wasn’t alone in that.

In fact, except for one person who had to leave for a class right away, we all stayed an extra twenty minutes after the panel was done, in order to chat and get to know each other better. And we started talking about setting up some kind of regular get-together, like a casual drop-in lunch, that would allow us to stay in touch. I really hope we’re able to carry through with that, given that this semester is almost over.

Then the next day, on Thursday evening, I went to a social/support group for trans and non-binary people for the first time. And it was so cool to, again, find a sense of familiarity in other people’s experiences that I don’t usually get. Even when our paths had been very different, and our actual gender identities varied, the fact that each of those identities was accepted, and we could all talk openly about our feelings and experiences without the usual gendered assumptions was really freeing. I’m looking forward to going back again.

Both of those experiences last week—especially coming on back-to-back days as they did—highlighted what a difference it makes (for me, anyway) to meet people who experience the world (and/or themselves) in ways similar to my own experience, which is usually quite different from that of mainstream society. We’re not all going to agree on everything, but it’s just nice to know I’m not alone. And for the most part, I have found myself in very good company.

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.

Academic Aspirations

So I’ve decided to take the leap. I’m going to start making preparations…to apply…to eventually enter graduate school. It’s a slow-motion leap, since the application deadline is all the way in January of next year, and I’ve got several things to do to get ready. But I’m hoping that after one more year taking undergraduate classes, as well as taking the GRE and preparing a solid application, I’ll be a good candidate for the program I’m looking at.

And that program? It’s a doctoral program in sociology. Gulp. I had initially discounted the idea of aiming for a PhD, feeling that it was too long a road to start down in my forties, and unsure how I would be able to pay for such a thing. But this department offers assistantships and tuition credits, so not only could I have my studies paid for, I could essentially have paid work in the department while I study. Sounds like heaven to me.

So, yeah. Sociology. I’ve been realizing that I am strongly drawn to social science research and writing, and I would love to explore sociological theory as it applies to the autistic experience, as well as areas related to disability, gender, and stigma. And this particular sociology department sounds like a very socially-conscious one that seeks to use its research to influence public policy in various areas, and that sounds like a great combination to me.

But it’s going to take some work to get there. I’m hoping to take the GRE this summer, which will take some preparation; I’ve always been pretty good at test-taking, but a lot of the relevant knowledge has atrophied since my original college years. And I want to put together a really great writing sample that showcases my interests and writing ability; I actually have an idea for a project that grew out of some planned blog posts that kept growing in scope until they really deserve to be a longer piece.

And that brings me to my current academic advisor, who is awesome. I had a meeting with him last week to register for next semester’s classes and discuss my eventual goals. He’s always been very encouraging of my plans, and after actually having me as a student in two of his classes this semester he has become even more enthusiastic about my plans for grad school. So when I told him about my plan to produce this research project as my writing sample, he offered his advice and support in refining it, and proposed that I work on this project in place of some of the future assignments for one of his classes.

So I am off and running on putting that together. And I’m very excited to be moving forward with a plan. I’m still very nervous about several things, of course. What if I don’t get into the program? Or what if I do, and it all ends up being too much to handle? But I’m remembering how much I really love academics when I’m studying something I’m passionate about, and I am very passionate about this.

And autistic passion can make things happen.

An Active April

I’m sure I’ll write more about April as Autism Awareness/Acceptance/Appreciation Month at some point in the next thirty days, but…not today. Today I am planning and prioritizing all of the various things I need to do during April, many of which have to do with everybody’s focus moving onto autism for the month.

The first priority is my upcoming webinar for young autistic adults interested in starting their own business; that’s coming up this Wednesday. To to fair, its timing wasn’t specifically related to April, as it’s part of a webinar series that has been going on since (at least?) February. But I ended up with a date in April, so it happens to be right at the beginning of the all-autism-all-the-time frenzy of the month.

Then two weeks later, I will be participating in a panel discussion at my local community college on the topic of being a student on the autism spectrum. I’ve been in communication with the coordinator to help streamline some of the questions and make sure the focus isn’t entirely on areas of difficulty. I’m really looking forward to this event, actually, and I’ll be curious to hear what other students have to say about their experiences.

At the end of the month I’ll be attending the Annual Autism Conference put on by Autism Connections in western Massachusetts. One of the keynote speakers will be Steve Silberman, whose book Neurotribes is still one of my favorites on the subject of autism (and definitely my favorite by a non-autistic author). I’m not sure what else to expect from this one, but I’m curious to see what the overall tone of the gathering is, and how inclusive the organization is of autistic perspectives.

During all of this, I also have to get through the last full month of my spring semester, do all of my software-testing work, and keep up with my responsibilities to my coaching clients. Oh, and try to expand the contents of my Etsy shop, get some writing done, and have some kind of family life with my husband and dogs.

It’s a lot, but it’s manageable. It’s all about prioritization and tracking. Calendars, checklists, and to-do apps are my friends—actually, they’re way closer than friends. Todoist is pretty much my constant companion these days, and I highly recommend it, especially for recurring tasks that need to be done every day, week, or month. And I recommend including self-care and “recharging” activities on to-do lists, because they’re important, too. There’s something particularly satisfying about getting that feeling of accomplishment from checking something off your list when that something was itself relaxing and rejuvenating. “I got so much done today, including taking a break!”

Speaking of which, it’s looking rather nice outside. I think I’ll go enjoy it.