Accommodations

I’ve been thinking about the concept of accommodations for people with disabilities. When I started taking classes again before applying to grad school, I made contact with the school’s disability services office but didn’t ask for any specific accommodations to be made. I wasn’t sure what kind of accommodations might be helpful, in part because I didn’t really know what to expect from my classes. But I wanted to be on their radar in case something came up, and I also wanted to be in the loop about anything autism-related that was going on at the school.

This worked out really well for me, and I plan to do the same thing at my new school. I still don’t anticipate needing any specific accommodations, but again, I’m not entirely sure what to expect from my classes (including the one I’ll be a TA for). But thinking about this reminded me of a journal entry I wrote late last year regarding some things that came up in the two classes I was taking; the following is based on that journal entry.

There’s a difference between asking for accommodations and asking to be able to stop accommodating the rest of the world for once. For example, I was in a class where we were given the option of doing an exercise as a whole, in one large group, or breaking into small groups for it. I expressed a preference for staying in the larger group. One other student agreed with me, but the rest preferred the small-group option. I didn’t press the issue, but I also didn’t realize that we were going to be doing a second small-group exercise later; if I had known that, I might have proposed doing one of each.

The thing is, I end up really drained and stressed out after doing small-group exercises where there are multiple conversations going on in the room at once; it takes a lot of effort to focus on the voices of those in my group against the background noise of other voices talking at the same time. That effort has a real effect on me. I could have expressed that explicitly, and suggested that it was an accommodation I would like to have…but I felt that would be imposing on other people. After all, I could handle it, it would just take a toll. Also, it takes a stressful toll on me to make that request in the first place, so it’s something of a tradeoff.

What I would really like, instead, is for things to just be different, so I don’t have to ask for accommodations. I feel like I accommodate the majority in so many ways that they’re not even aware of—that’s exactly what I was doing in the example above, after all. Is it so much to ask for an environment where I don’t have to do that?

Around the same time as this incident, I had an experience in another class that really had an impact on me in terms of expressing my needs and preferences. This was a statistics class, and the professor was asking students to come to the front of the room and write on the smart board when we were working on practice problems. She usually asked for volunteers, but when I hadn’t volunteered after several problems, she nudged me to do one. I didn’t mind the math, but the smart board was a little bit glitchy, and the text looked like it was jumping slightly. From the back of the room it wasn’t too bad, but I knew if I was up close to it, it would give me a headache pretty quickly.

Because of that, I kind of made a face as I started to stand up, and she said I didn’t have to do it if I didn’t want to. I explained that I would probably get a headache, and she said then I shouldn’t do it. I added something about having enough sensory issues just being in that room with those lights (it was an interior room with no windows, so it was all fluorescent lights and computer screens). She looked dismayed, and I quickly said it was ok, I just deal with it, and she said that since I was going to be in another class with her next semester, she would see if she could get a room that had natural light so we didn’t have to use the fluorescents. That didn’t end up working out, unfortunately, but I was really moved by that concern.

I forget, sometimes, how much sensory stuff like that I just grit my way through, to the point where I don’t even notice it anymore. I might eventually notice how drained I feel after class, but I’m just used to putting up with so much stuff that it doesn’t occur to me that there might be alternatives. I’m sure a lot of that stems from an entire childhood of being forced to put up with stuff (fluorescent lights, those high-pitched squeals from ‘80s electronics, the constant noise of other children) that other people didn’t even notice and didn’t believe could actually be bothering me. Then, of course, the gut-it-out nature of both MIT and the military shut down any desire to speak up and ask for changes.

What would things be like if I hadn’t had all of that extra crap to deal with? Or if others actually noticed and cared that it was hurting me?

Cooking Up New Habits

I’ve been working on building better food and fitness habits before I start grad school in the fall; I figure that it’s easier to build habits like that when I have free time, then I can adjust when time gets tighter. One of these involves learning more about nutrition and starting to cook more so I can eat more whole, unprocessed foods.

Cooking isn’t something I have typically enjoyed doing. For a while I experimented with a meal-kit delivery service, and got fairly comfortable in the kitchen, but I ended up getting tired of their recipes. I find a lot of things about cooking challenging. When I know what I am making, I’m pretty good at planning out efficient ways of getting everything done at roughly the same time, but planning what to make takes some effort. I also find things with many steps (like clean this, chop that, brown this, bake that) very tiring, and they look really daunting ahead of time, which makes me not want to even start. There are some sensory issues as well, especially around handling food; I don’t like wet or oily fingers, for example. And then there’s all the cleanup afterward.

My husband does like to cook, but there are several evenings of the week when he is not home because of his work schedule. We sometimes manage to make enough food so I have leftovers when he’s out, but that doesn’t always work. As I’ve been starting to cook more, our strategy has been to get me set up with the meat for my meal already made—either he cooks an extra serving the previous night, or picks up something pre-made at our local food coop, where I know they use good ingredients. Then I cook the sides to go with it. That way I have less work to do in the kitchen, and I can experiment with different vegetables and ways of cooking them.

In the course of this, I have discovered that I really enjoy roasted asparagus, broccoli, brussel sprouts, and carrots. The combination of roasted brussel sprouts and carrots is particularly good; I just make them very simply with a little bit of olive oil, sea salt and pepper. Soon I’m going to try roasted zucchini as well. (Roast all the things!) It’s been gratifying to find some new things I like that are easy to make, so I am looking forward to branching out into more recipes, including ones where I make everything myself. It’s also fun to cook together when my husband is home; that takes away some of the “so many things to do” anxiety about all the steps.

I have a book with a four-week meal plan that I’m thinking of trying out. That, too, would reduce some anxiety around deciding what to make for each meal. It’s just a matter of making sure we have all of the ingredients I need when I need them; sometimes it’s tricky given our shopping patterns, but I’m sure we’ll figure it out. And the recipes look great, so I think it will be worth it!

The HIPPEA Model of Autism

So! I have a new research rabbit hole that has captured my attention. It comes from cognitive science, which is not really my field, but it relates to autism and disability theory in some very interesting ways. My primary source for what follows is a 2014 paper by Van de Cruys et al., titled “Precise Minds in Uncertain Worlds: Predictive Coding in Autism,” which you can find in full at that link. I’ll include a full citation for it at the end of this post as well.

Let’s start with the words “predictive coding” in that title. The basic gist of predictive coding models (if I understand correctly) is that our brains make predictions all the time about what to expect from our environment (including our internal environment). Those predictions happen on various levels in a hierarchical way, with more complex predictions happening at a higher level than more basic processes, such as sensory input. We base these predictions on mental models of our environment, and we can update those models when our predictions fail.

Of course, the sensory world is not always predictable; in fact, it mostly isn’t. Nothing is ever exactly the same from situation to situation, plus our biological sensory systems aren’t perfectly accurate or consistent. Differences between our predictions and reality are called prediction errors, and as I mentioned above, those errors can be used to update our internal models—in other words, we can learn from them. But to be efficient in that learning, we need to be able to determine which of those errors are due to important changes in our environment that we should learn from (signal) versus random fluctuations in either our environment or our sensory systems (noise).

This involves having an idea of how much natural variability there is in the situation or environment; if something is different, we want to know if that’s an expected difference (which can therefore be ignored) or an unexpected one (which we should learn from). In the paper mentioned above, this is called “meta-learning”—learning what can be learned. Ideally, prediction errors are weighted such that differences that seem important (signals) are used to adjust the model while those that seem random are ignored. That weighting is based on what is called the “precision” of our prediction errors, which is an estimate of how much variability we expect in the system. If precision is high, it means we want to pay attention to more of these prediction errors, because we expect them to be meaningful; if precision is low, it means we expect most of that variability to be random noise that can be ignored.

With me so far? Because this is where the HIPPEA model of autism comes in. HIPPEA stands for “High, Inflexible Precision of Prediction Errors in Autism,” and it basically suggests that the precision of our sensory prediction errors is constantly on “high.” This means that we treat every incoming difference between our predictions and the environment as being important and meaningful, no matter how small and/or random it is. So we are constantly updating our models and learning from all of our sensory input, instead of treating some of it as random and ignoring it.

If that sounds exhausting, that’s because it is. Constantly feeling like we’re adjusting to new information results in chronic uncertainty, which leads to anxiety. And the more complex the sensory environment is, the more energy it takes and the more uncertainty we’re likely to encounter—and one very complex environment is the social environment. As Van de Cruys et al., put it, “we wonder whether social may just be a synonym of complex here” (p. 665, italics in original).

As laid out in their paper, this model predicts a number of common features of autism, including executive functioning issues, sensory perception differences (including sensory overload due to a constant influx of prediction errors), face recognition difficulties, and atypical social communication. One aspect that really caught my attention, though, had to do with stimming. As the authors pointed out, in addition to making predictions about our environment, we also make predictions about the outcomes of our actions; for example, I make a prediction that if I press down on the space bar on my keyboard, it will advance the cursor on my screen. I expect a certain tactile feedback from the keyboard, and visual feedback from my screen, and unless my space bar is stuck (or my hands aren’t where I thought they were), I get both.

In this model the purpose of stimming, then, is to create feedback that is predictable—predictable because it is something we ourselves initiated. I flap my hands and feel them flap; I rub something soft and feel the softness; I make a sound and immediately hear it. If I am in an environment where everything else feels unpredictable—meaning that I am adjusting to a large number of prediction errors—generating sensory input that is predictable helps to mitigate that. This is the case even when the form of stimming might otherwise seem to make sensory overload worse (like blasting loud music when you’re on the edge of a meltdown; yes, it’s loud, but I made it loud).

The HIPPEA model is still relatively new, and more research is needed to test its applicability, but I find it very intriguing, and a lot of it really makes sense to me. I initially came across it in another very interesting paper, Legault, Bourdon, and Poirier’s “Neurocognitive Variety in Neurotypical Environments: The Source of ‘Deficit’ in Autism” (2019). This paper used the HIPPEA model to argue that the so-called cognitive “deficits” in autism are actually caused by a mismatch between the kind of environments favored by autistics and the predominance of environments created by and for neurotypicals.

As Legault et al. explain it, HIPPEA suggests that autistic people end up with “overfitted” mental models: because we are constantly refining them based on every new piece of information, they become very detailed and very specific, but less generalizable to other situations. Neurotypicals, on the other hand, tend to have “underfitted” models, with less detail but more general applicability. Because they’re not including everything, they can tolerate (and even enjoy) much noisier, more unpredictable situations. They can also find new social situations more familiar, because they can generalize from their models, while we’re analyzing all of the differences.

Meanwhile, being in their environments leaves us exhausted trying to process all of the noise (both literal noise and figurative noise-as-opposed-to-signal noise) that they’re ignoring. But that’s where we typically are—in environments that favor the neurotypical form of prediction processing (not to mention the neurotypical definition of what is considered worth paying attention to). And as Legault et al. pointed out, framing autism as a set of “deficits” in autistic people ignores this imbalance in who gets to define the dominant social environment(s) in which we find ourselves.

So that is what I have been reading this weekend, and again, it really makes a lot of sense to me. But it’s also still a fairly new model, and I haven’t explored every aspect of it in depth (and again, cognitive science isn’t my field). Any misunderstandings or misstatements in how I’ve presented it are unintentional, and if you think I’ve made any, please let me know. And please let me know how you think this model relates (or not) to your own experience!

References:

Legault, M., Bourdon, J. N., & Poirier, P. (2019). Neurocognitive variety in neurotypical environments: The source of “deficit” in autism. Journal of Behavioral and Brain Science, 9(6), 246-272.

Van de Cruys, S., Evers, K., Van der Hallen, R., Van Eylen, L., Boets, B., de-Wit, L., & Wagemans, J. (2014). Precise minds in uncertain worlds: Predictive coding in autism. Psychological Review, 121(4), 649-675.

Under the Weather

No, I’m not sick, which is what people usually mean when they use the phrase “under the weather.” Instead, I am feeling the effects of this humid, changeable, off-and-on rainy day (with possible storms ahead). My head feels just as cloudy as the sky, and staying on task is harder than usual. Also kind of like the weather, I suppose, which is now starting to lighten up again.

Of course, it probably doesn’t help that I woke up around 4:15 this morning after one of my dogs started throwing up at the foot of the bed. Poor thing is fine now, but I had a hard time falling back asleep after that. At least, until my alarm started going off, at which point I fell asleep after hitting snooze, and cat-napped like that for the next 40 minutes. I even managed to have some interesting dreams in those little snippets of sleep.

I think of these weather effects as the intersection of internal and external sensory sensitivities. Atmospheric changes can have a big impact on me, even when they’re subtle. And while I think most people are affected by the weather in some way (in their moods, energy levels, etc.), I think I tend to notice it more than most. My interoception is wonky; I can totally not notice that I’m hungry, or tired, or need to pee, but I will notice the tiniest sensation that something isn’t right–if I’m getting sick, for example.

So, that’s about as long a post as I’m going to manage today. Think I’ll go stare into space for a while.

Finding Your People

One of the common themes in a great deal of autobiographical writing by autistic people is a pervasive sense of not fitting in, even among one’s own family. That’s one of the reasons that learning that one is autistic later in life can come as a profound relief; after a lifetime of feeling different, there is finally a name for that difference—or part of it, anyway. (Being autistic isn’t the only way a lot of us are different from others, but I think it’s often related.) Having that understanding often replaces a feeling of simply being bad or wrong for not fitting in or doing things “right.”

But having a name for it also does something else that has been equally profound for me: it provides a way of looking for others. Learning that you’re part of a neurominority gives you the language to seek out others in that same minority, with whom one might find common ground. Of course, like any minority (or majority, for that matter), autistic people are not monolithic; common ground isn’t necessarily automatic. But I have found—and have heard it echoed by many others—that it often takes less effort to connect with the thought processes and interaction style of other autistic people than with the world at large.

I have noticed that descriptions of autism often include depictions of non-autistics as “naturally” understanding social interaction and social cues in a way that we do not. But a great deal of research in sociology and social psychology has centered on a) common breakdowns in such communication, b) understanding how people learn these things through the process of socialization, and c) how they differ across cultures. They’re not innate, and they’re not infallible—not for anyone.

Now, maybe that begs the question of why autistic people don’t seem to absorb the same lessons about social expectations as others; there seems to be something innate that makes our social styles different. (I suspect a combination of monotropism and sensory differences, which may themselves be related.) But the impact of that difference can vary by culture, too: for example, cultures vary in how, and how much, eye contact is used. Being in a subculture focused on a particular interest feels different than being in a group of people making small talk. The social environment you’re in shapes social expectations, and makes it more or less likely for you to be able to meet them.

So finding other people who have a similar social style can feel like coming home to one’s native culture after trying to make do in one that is different and much less comfortable. A lot of us get pretty good at the latter, but that doesn’t mean it’s easy. And when it seems easy to everyone around you, it again starts to feel like you’re bad or wrong. Finding other neurodivergent people who are similar to you (which, again, won’t necessarily be all of them, and I also don’t mean to say connection isn’t possible across neurotypes) can go a long way toward alleviating those feelings by reflecting back a different way of being and socializing that feels more like home.

This is one more reason I embrace the label of “autistic” as a social identity, as I mentioned in a recent post. Doing so has allowed me to find community. It’s not my only community, but it is extremely precious to me. It is my hope that identifying as autistic will also allow others to connect with me, so we can build that kind of community for more of us.

In the Looking Glass

I had a great discussion earlier this week about my research interests in sociology. (Opportunity to gush and info-dump about everything I’ve been reading and thinking? Yes, please.) One of those research interests is the application of sociological approaches to identity formation to the formation of autistic identity.

There are detailed examinations in sociology of the way in which self-identity is formed through interaction with others; Charles Cooley called this the “looking-glass self,” and elaborated that we form (at least part of) our self-concept based on how we believe others perceive us, and what judgments they might make about us. This imagined perception and judgment may or may not accurately reflect how others really see us, but it requires putting ourselves in other people’s shoes in order to view ourselves as they might.

I find this whole idea very interesting from two perspectives related to autism: first, there is the mismatch in thinking that frequently leads to misunderstandings between people with different neurotypes. (This is the issue that is typically mis-labeled as a “theory of mind” deficit in autistic people, but which is more accurately described by Milton’s “double empathy problem.”) Given this, if one is frequently wrong in assessing other people’s perspectives because their way of thinking and perceiving is very different from one’s own, what effect does that have on this formation of a “looking-glass self”?

And second, there is the very real stigma and antipathy surrounding not only the label of autism, but autistic traits and behavior. For example, a series of studies found that non-autistic people rated autistic people unfavorably, and indicated less willingness to interact with them, based on only brief, “thin slices” of recorded behavior. This was in the absence of any information about diagnosis or autistic identity; that negative impression was based only on quick first impressions. And if you’re autistic, you don’t need studies to tell you how being perceived as “odd” or “awkward” can lead to social exclusion and/or hostility. So when what one sees reflected back from others includes that kind of hostility or simple reluctance to engage, what effect does that have on one’s self-perception? (This is explored in the literature on stigma, as well, and applies to people with other stigmatized identities, which I also have an interest in.)

So I am interested in looking at these processes from the perspective of an autistic person, and in particular as one who believes that “autistic” can be a positive identity—in fact, having a positive identity as an autistic person has been shown to improve mental health. But I realized, a few days after my conversation, that when presenting my ideas on this topic I probably have to start by establishing that “autistic” can be an identity at all. I think most people hear “autistic” and think only of it being a diagnosis, rather than a social identity—a neurominority. And if non-autistics react negatively to autistic traits in social interaction, then it’s an inherently stigmatized identity, even beyond the label. That has real effects on people’s lives (as it did on mine before I even knew I was autistic), and it has its roots in the social world, not just in individual neurological differences.