Difference, Disability, and Disorder

Part of being autistic means that I process things differently than most people. Sensory input, social cues, emotions, physical sensations, information from spoken or written words—all of these come in (or arise within me) with varying degrees of intensity, and sometimes get tangled up with one another. Sensory input can distract from social cues, for example, and information in spoken form may be missed if I am trying too hard to attend to social expectations. And both social and sensory input can easily become overwhelming and/or draining, especially if I encounter high levels of both at the same time.

The way I present my own thoughts and reactions to things is different, too; I gesture extravagantly when I talk, but my facial expressions are often minimal, and may not reflect what’s going on inside. I don’t have much vocal inflection unless I really pay attention to it, and I prefer to converse for information rather than social purposes. Plus I often see patterns and connect dots many people don’t, and this sometimes makes it hard to follow my line of thinking unless I explicitly outline each step (which I often neglect to do because they seem so obvious to me).

These things make me different, and they can also sometimes be disabling. Or, to be more precise, they can lead to my being disabled by certain situations—the social and sensory overload at my reunion dinner earlier this month is a good example. (And I didn’t even mention the huge crying meltdown I had when I finally got back to my hotel room and tried to get to sleep, as well as the exhaustion I felt for the whole week afterward.) I have also been at a disadvantage in social interactions such as job interviews, where “people skills” and nonverbal communication are evaluated at least as much as experience. And, of course, I have experienced my share of social exclusion, especially when I was younger.

So in some contexts, I have felt disabled by my differences. But does that make them “disordered”?

Autism is, of course, defined in the Diagnostic and Statistical Manual of Mental Disorders. Its entry also has “disorder” right in the name: “Autism Spectrum Disorder.” And like most other entries in the manual, its diagnosis assumes impairment of “normal” functioning. But this glosses over some important considerations about what constitutes “normal.” Especially when it comes to “disorders” of social communication, the social context is at least as important as any individual “impairment.”

Research into autistic social communication has found that misunderstandings between autistic people and non-autistic people are a two-way street, something that sociologist Damian Milton has termed the “double empathy problem.” Meanwhile, some other new research has shown that social interactions between autistic people are as effective as those between non-autistic people in terms of communicating information and generating rapport. Where communication breaks down is between autistic and non-autistic people (again validating Milton’s concept of the “double empathy problem”).

These findings reflect my own experiences, although of course there are autistic people I don’t connect well with, and non-autistic people I am very close to. But to say that my social and sensory differences constitute a “disorder” in contrast with “normal” functioning is…well, normative. Would I really be better off if I could tolerate, or even enjoy, an experience like my reunion dinner, but lost the sensory sensitivity that allows me to notice so many subtle aspects of my environment? Or if I cared more about social standing and interaction than getting lost in hyper-focused research into a favorite topic? Being like the majority has its advantages, but so does being me.

So yes, I am different. I am sometimes disabled by the combination of my differences and inaccessible environments or rigid social expectations. But I reject the label of “disorder” even as I embrace the label of “autistic.” Learning that I’m autistic has been immensely helpful. Knowing this earlier might have helped me avoid the massive burnout I experienced in my early thirties, due to not understanding my own social and sensory needs. Because in the right environment, or with the right supports, I don’t feel impaired, and I have no problems socializing. (I had a lovely dinner with friends two nights ago, for example.)

That burnout hit me hard, and led to reduced employment and financial difficulties. It also forced me to make a lot of changes in my life in order to cope with stress. Many of those changes were positive, and all of them put me on a good path in the long run, but it was a tough transition (and it would still be years until I got my diagnosis). And certainly there are autistic people with challenges different from mine, and/or with additional disabilities, who find the world a lot more disabling. But whenever I think about ways to make the world better for autistic people across the spectrum, they don’t involve changing us. Instead, they involve making things more accessible to people with varying sensory and social needs, people with different communication styles and methods, and people who experience the world differently.

Removing my differences would also make me fundamentally different. That might make me more like others, and closer to the norm, but who is to say that would make me better? And who is to say that the world would be better for it, too?

Going Back, Moving Forward

Looking out from inside the main entrance to MIT

As I mentioned last week, I’ve been having some feelings about my recent return to MIT for my 25th reunion, and how that relates to how I’m feeling about starting graduate school in the fall. Thanks to alexithymia, I’m still not entirely clear on what all of those feelings are, but I can at least articulate a few things at this point.

One thing I noticed while walking around campus is how little I remembered about how to get around, outside of the most obvious landmarks. I can chalk some of that up to physical changes that have occurred on campus over the past 25 years, but to be honest, there was a lot I just didn’t remember. My therapist has pointed out that having fuzzy or ill-formed memories of a period in your life (childhood, for example) is a common symptom of having had depression during that period. I think this is absolutely spot-on regarding my time at MIT, which was four years of increasing pressure, anxiety, and alienation. I’m sure I was deeply depressed for a good portion of it, too.

Another thing that came to mind, especially as I talked with people from my class, was how completely my interests have changed from when I first decided to attend MIT. Well, I shouldn’t say “completely,” I suppose; I had been very interested in psychology and other social sciences starting in high school. But I was certain, back then, that I wanted to be a scientist in some sub-field of physics, so that’s what I went to MIT to do. It was not a good fit.

I excelled in math and science in high school, and I received a lot of praise and attention for this in particular because I was (perceived to be) a girl, and that made me think it was what I wanted to do. At MIT, I kept up, but I quickly learned that I didn’t like physics as much as I had thought I would. Perhaps more importantly, I met a lot of people who really did live and breathe their chosen fields, which made it clear that this was not something I could keep pursuing for the many more years it would take to get the advanced degrees needed to do interesting work in the field—a field whose work no longer appealed to me anyway. For reasons to do with my ROTC scholarship, I was limited in my options for changing majors, so I stuck it out in physics, gritting my teeth and taking humanities electives to keep myself sane.

This is one reason I hadn’t seriously contemplated graduate school until now. Right after graduation, of course, I was far too burned out to even consider more education anytime soon. Because I was an Air Force officer, and a master’s degree was eventually required to be promoted to major, people would ask me early on (even as a brand-new 2nd lieutenant) when I was planning to start working on it. I would shudder inwardly and tell them not right away, I still had a lot of time. (And I doubted from the beginning whether I would be staying in long enough to make major anyway, so…)

But even later, when I started thinking about going back to school, I always felt at a loss when it came to what I might study. More physics was right out, but then what? Not only did I not really know what I wanted to do, I also dreaded the possibility of finding myself in the same position of studying something that felt like a chore I was forcing myself to do, rather than something I was truly interested in. Even when I started taking classes two years ago, thinking I might eventually apply for a Master’s of Social Work to become a counselor, I knew that a lot of that curriculum would be very difficult for me to navigate. Learning psychology is great, but the practical aspects of learning counseling skills, and all of the interpersonal elements of that kind of work, seemed more daunting.

Then I took sociology. It’s funny, because it was a little bit of a fluke; I was planning to take Intro to Human Services my first semester, as it was a prerequisite for most of the other classes that I wanted to take. But it was canceled at the last minute, so I substituted Sociology 101 instead. That was on my list of classes to take, but I had initially planned on taking it a little later. It worked in my schedule, though, so I took it right away…and realized this was the thing I wanted to study.

In a way, I had been studying it for a long time. Sociology is a vast field, or maybe a series of related fields, and a lot of my reading over the years could be filed somewhere under its umbrella. As I mentioned earlier, I enjoyed learning about psychology starting in high school, but even more than individual psychology, I was fascinated by social psychology and the study of social interaction and the structure of society. And is it any wonder? The social world was frequently baffling to me, and yet here was a way of studying it, picking it apart, and looking for patterns. That first sociology teacher described sociology (citing C. Wright Mills) as “making the familiar strange,” in that it questions the taken-for-granted nature of society and holds things up for study that most people didn’t think twice about. But for me, a lot of that “familiar” was already strange. Of course I wanted to study it.

This all left me feeling very out of place at a reunion for a school that is so intensely focused on science and technology that it has a single department for “Humanities, Arts, and Social Sciences.” But this actually brought me full circle to the disconnect I felt while at MIT, and ended up making me feel better about the whole thing. I was out of place there, both that weekend and 25 years ago. But I didn’t know myself back then: I didn’t know I was autistic, I didn’t know what I wanted to do, and I didn’t know a whole lot of other facets of myself. I’m ok with being out of place there now; it’s not where I belong.

It is still part of me, though. I’ve been thinking of the move from physics to sociology like it’s a hard, right-angle turn, but physics isn’t a bad starting place for any field of study. I value the training I received in critical thinking, the scientific method, and not being afraid of complex math. And, of course, the trial-by-fire nature of MIT (it’s also called “drinking from the firehose,” so maybe I’m getting my metaphors mixed?) taught me a lot about taking on hard challenges and just plain getting things done. Ultimately, it feels good to have gone back for my reunion, and I’m ready to move forward in this new direction without hesitation.

Too Much and Not Enough

The view from the balcony at dinner.

I’m still processing some feelings about my 25th college reunion this past weekend, and how it relates to moving forward into graduate school this fall. I want to write more about that later as I figure it out, but today I want to unpack the most stressful aspect of the reunion, which was the class dinner on Saturday night.

I met up with a friend for the reunion, and this was the only scheduled event we had registered for, and it kind of dominated the whole day. We drove in early to attend an alumni memorial service (and to beat the traffic), so the day stretched very, very long before dinnertime came around. (It would have been harder to take a break and go back to the hotel than to stay on campus, due to the traffic and numerous other events going on in the area.) It didn’t help that I had slept very poorly the night before, due to the unfamiliar hotel bed.

We did have lots of time to walk around, take pictures, do some shopping, and have lunch, but all of this meant that I was pretty worn out by the time dinner rolled around. Then it started with a cocktail hour, with very few places to sit. The venue was pretty, with a nice view of the city, but standing for an hour after walking so much was very tiring. And while most of my day had been filled with one-on-one conversation with just my friend, now it was expanded to small groups. At first this was ok, because while it was more to keep track of, it also meant that I could just listen to some parts of it, without feeling the need to reply to everything.

I was happy to hear when dinner was ready, both because I could finally sit down and because I was getting pretty hungry at that point. Walking into the dining room, though, I found it disappointing that a) there wasn’t much of a view from that room, b) the tables were packed in pretty close, and c) dinner was a rather underwhelming buffet. I was expecting better food for the price of registration and the (admittedly vague) description of the dinner as “upscale.” Once things got going, however, these were very minor issues compared with the overwhelming nature of the social and sensory environment.

Reflecting back on it after the fact, it’s interesting to note that I didn’t have any issues with social anxiety that whole day. Instead, what came to a head during dinner was a combination of two separate, but related, issues: sensory overload and social overload. In terms of sensory overload, there were a few hundred talkative people all seated in the same room, plus a string quartet or something (I didn’t get a good look) playing in the corner. The noise level was overwhelming, especially all of the voices coming at me from all sides. People sometimes describe noise like that as a roar, or a wave of sound, but for me it doesn’t blend together. It was all separate, and never stopped. Eventually my head felt fuzzy, like my brain had been shredded into fluff by all of those individual needles of sound.

This was bad enough, but it really exacerbated the social overload that was also going on. This had already started, of course, given that I had spent the past twelve hours in near-constant conversation and interaction. So by the end of the day, the addition of more people to all of that interaction really started to take a toll. And with all of the noise, it was extremely difficult to understand what people were saying to me if they were more than about a foot away, and of course people were trying to talk across the table. So it required more and more focus just to follow what people were saying, and often I had to ask people to repeat themselves. And asking just increased the amount of interaction required, so it didn’t take long before I was starting to shut down.

I was able to get up and leave the room once I had finished my dinner, and there was a nice balcony with a view of the Boston skyline. It was quiet out there, and cool, so I was able to recover a little bit. I headed back in when I felt better, but if anything the room seemed even louder after taking a break from it. I didn’t last very long this time, and let my friend know I couldn’t take any more. To be honest, all I could really manage was something like, “I can’t do this,” while shaking my head and getting out of my chair. I fled back into the next room, where I found a table and sat down.

My friend followed me a few seconds later, along with another friend of hers we had been sitting with. They asked if I was ok, and at first all I could say was, “No,” but then I explained that I was overloaded and done being in the dining room. My friend was ready to leave, too, so we said goodbye to her other friend and headed out. I was extremely tired, but I think I was still really wound up from all of it, because even after we got back to the hotel I couldn’t relax enough to get to sleep. (I also needed to stay up a bit to eat some of the snacks I had brought, because I hadn’t really eaten enough dinner.)

The whole experience was both overwhelming and underwhelming at the same time, and the underwhelming nature of the dinner itself made it really not worth dealing with the overwhelming social/sensory aspects. Other than wearing noise-canceling headphones (which were all the way back in my car and would have made me extremely self-conscious), I can’t really think of anything I might have done to improve the situation. Sitting in a different location in the dining room might have helped, but it was very unclear where the best place would have been. Even around the edges of the room, it was hard to find a spot that wasn’t close to one of the buffets, or a busy doorway, or the musicians. Short of filling my plate and taking it outside to eat, I couldn’t really have taken more of a break from it—and at first I was really enjoying the conversation, so I didn’t want to just bail on my whole table right off the bat. Mostly I was disappointed by the whole situation.

It has taken me a day or so to recover; I didn’t sleep well again that night, and then I had to drive home in the morning. My body bounced back from the hours of walking, but my brain was still fried. Ultimately, I think having a larger venue so the tables could be spread out more, perhaps with smaller groups of people clustered in different areas, would have helped immensely.

And, of course, better food.

I’m Going to Graduate School!

So…I guess I was busy again during the spring semester, since I haven’t posted since January. 😉 But the semester went very well. I took Sociology of Gender and a class in research methods for the social sciences. Both were interesting, although the latter was mostly focused on psychological research methods, while I’m more interested in sociology. There are some overlaps between the two, though. And the final project left me with a finished research proposal that I’m hoping to turn into an actual project someday (probably with some modifications as I learn more, though). I’ll post more about my final projects for both classes a little later, though; they both relate to things I’ve written about on this blog before.

But, of course, the big news is that I got into graduate school! I will be starting in September in a doctoral program (with a master’s along the way) in sociology, with a paid teaching assistantship that will replace my current part-time job. This will be a huge change in just about everything, but I am very excited about it. They admit only a small cohort each year, due to the financial support they provide, and I’m looking forward to getting to know the other people in mine, and learning what their research interests are.

I’ll be going back to my first alma mater, MIT, this weekend for my 25-year reunion. It’s my first time back in a long time, and of course since I’ve been back in school I’ve been thinking a lot about my experiences the first time around. One big difference as I head into graduate school is that I won’t be living on campus. It’ll be a longer commute than I’ve had in a while, but not by much, and being able to come home to my quiet house in the woods will be a nice change from dorm living. And, of course, I’m older now and have a much better understanding of my neurology and my sensory needs, as well as more confidence when interacting with both professors and peers.

One thing I anticipate appreciating about grad school is the opportunity to focus deeply on my chosen subject matter. Autistic hyper-focus, activate! 🙂 That has also been a nice feature of my last two years in school, since I was not pursuing a degree so much as filling in some undergraduate pre-requisites for my new field of study. So I was able to choose only classes I was interested in. The graduate program does have some required classes, of course, but they’re still focused on sociology and related research-y topics like statistics and writing. And I think I’ll really enjoy having my job also be something related to my field of interest, rather than being completely unrelated as my current job is.

So now I have the summer to decompress and prepare for these big changes. I’ll be staying at my current job until the end of July, then taking August off. I have a couple of possible plans for that month, but I’m waiting to hear some more details before finalizing them. In any case, I’m still doing my usual amount of reading and thinking about research that interests me, and I’m hoping to get back into the swing of writing outside of class assignments again. I do want to blog about my experiences in academia, so I want to re-establish some good writing habits while I have some spare time. So I will be back posting again before another six months passes.

Promise. 🙂