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?

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.

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?

Too Much and Not Enough

Boston skyline with trees in the foreground and blue sky above it.
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.

Crunch Week, With Ducks

This last week felt like a marathon run at a sprinter’s pace. My work schedule became something of a crunch just as I was finishing up the last week of my school semester. But finish it I did, and all of my work, too; there just wasn’t much time for anything else.

I did go to Pride last weekend, which was my first time. And it was fun, but very…overwhelming. I felt like I was constantly immersed in waves of people, and the sound system for the staged events was ridiculously loud (and I was wearing earplugs). If I wanted to be close enough to be able to see the stage, I had to put up with a volume level that threatened to give me a headache. I don’t understand how anyone could stand it, to be honest—especially the people who were even closer. I’m still happy that I went, but it was hard to enjoy it as much as I wanted to.

So I started my week feeling already a bit fried. Then I had a number of “extras” sprinkled throughout my schedule for the week—one-off events, or monthly appointments—that filled in a lot of the time and also made me feel continually pulled from one thing to the next. That also tends to leave me feeling fried. So here I am at the end of the week, trying to remember what it is I wanted to write about, and deciding I’ll just write about feeling fried.

This weekend is a busy one, too, and Monday is looking like a bear, but at least after that my schedule “should” be easing up now that my classes are done. But there are so many things that I’ve been wanting to get back to, or wanting to make time for, and I keep saying, “Ok, over the summer I’ll…” I want to make sure I don’t let those things slide, but I also need to give myself time to decompress from this latest crunch time.

Luckily, our beautiful land is full of spring wildlife, and the pond in particular has been a source of relaxing visuals and lovely sounds. (Although around dusk, those sounds can really ramp up. If you haven’t heard it, you’d be amazed at how ear-splitting a pond full of frogs can be.) I can’t help but take moments throughout the day to pause and look out at all of it.

So, here: have some ducks. In the past couple of years, we’ve had wood ducks bringing up ducklings in our pond, but this year it’s the mallards who have been around the most. Hoping for ducklings either way, though!

Pair of mallard ducks standing at the edge of a pond

Recharging My Batteries

…is not something I did this weekend. In fact, I need a weekend after this weekend, but I’m not going to get one. At least I do have this Friday off (for Veterans Day), so it’ll be a short work week, but I expect it to feel long instead.

I visited family this weekend, including going to a wedding reception for my cousin. I hadn’t gone to any family functions in a while, so it was good to see people (although everyone’s kids had grown roughly six feet taller, so I didn’t recognize any of them) but it was also very loud, the food arrived late, and everyone was very huggy. Focusing on conversations against a background of loud music and lots of other conversations took a lot of energy.

Overall, though, it was a really good visit — I got to spend time with my parents and sister, and the dogs were really well behaved. I even got some study time in, so I’m not too far behind my usual weekly schedule. I’m just wiped out now, after the three-hour drive home in a rainy drizzle.

Last week I was actually very good about being aware of my energy and anxiety levels, and postponed starting on a new work project that could have started on Thursday, because I had a lot of things to get done before heading out for the weekend. Of course, that project was postponed until tomorrow, so I can’t really take the same steps this time, but at least I did get a lot of things wrapped up before the weekend so they won’t be hanging over my head this week. Just the usual load of work, school, and personal projects — but I’ve gotten used to managing that, and I can find little ways to recharge as I go.

And that starts right now, with a relaxing rest-of-my-Sunday. Hope you’re having a good one! 🙂

Authentic Autistic Cooking

I have never liked to cook. I did it a little back when I lived alone, and a little more when I was with my first husband; he didn’t really like to cook either, so we agreed to split the job. But my current husband loves to cook, and, well, I like to let him. 🙂

The only problem is, he works in the evenings three days a week, which means I need to fend for myself for dinner. Sometimes he makes me something in advance, other times I get take-out, and yet other times I eat leftovers or some frozen dinner type of thing. But none of that is ideal, and one consequence (besides me not eating as healthily as I wanted) is a feeling of dependency on my husband; when he isn’t home, I’m not sure what to do, which leads to increased stress. It took me a little while to pinpoint this, but when I did I knew something needed to change.

But cooking? I have never really enjoyed cooking.

For one thing, I like to have clear instructions when I am first learning something. Once I’m comfortable, I can start to wing it, but I don’t like to do that right away. The trouble is, when trying to follow a detailed recipe, I’d inevitably run into ingredients (or sometimes tools) that I didn’t have, so I’d have to adapt it. That involves evaluating what I do have, and making decisions. This quickly becomes overwhelming. Of course, I could always choose a recipe ahead of time and make sure I had everything I needed, but somehow that never seemed to happen. (Good old executive functioning…)

So I decided that if I was going to start cooking for myself on nights I was alone, what I needed was a) step-by-step instructions, and b) the knowledge that I had all the ingredients required. Enter meal subscription boxes.

There are a lot of those out there now; you may have heard of Blue Apron or Hello Fresh, but there are several others. After a bit of research I ended up choosing Sun Basket, because I liked their ethic of using organic and ethically/sustainably sourced ingredients. I also liked that I could choose which meals I received, so I wouldn’t be surprised by a main ingredient that I absolutely abhorred. I don’t have too many food issues, personally, but there are some things — eggplant, for example — whose texture I just can’t take.

So I just got my first box this week, and cooked my first meal last night. This…was a lot of work. With a few small exceptions, what they send you are raw ingredients, so that you are cooking entirely from scratch. That’s one of the things I liked about this plan, but it is quite a lot more than I am used to doing. Also, while the recipes do include timing instructions (while the X is baking, prepare the Y, etc.) at least this first time, things didn’t work out exactly to plan. So it was a bit of a scramble at times.

I also have some sensory issues around getting my hands sticky, or slimy, or in contact with raw meat. So I was frequently stopping to scrub my hands free of oil, lemon juice, and/or bits of food as I went. (That probably didn’t help with the timing bit.) On the other hand, I did enjoy the sensory experience of smelling everything as I chopped and cooked it, as well as the visual display of all the fresh ingredients on the cutting board.

And in the end…this was by far the best meal I have ever cooked to date. The mix of flavors was very nice, and there was plenty of food. Beyond that, I had a fantastic sense of accomplishment from making this meal, as well as a pleasant sort of fatigue that left me very relaxed after I ate it. I’m looking forward to trying a different dish tonight, and tomorrow my husband and I are going to make one together. It’s only been one night, but so far this seems like a great solution to my original problem of what to do for dinner on my own.