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?

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?

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

Identity First

As I mentioned in my last post, I have had a post about so-called “person-first” language percolating. This will likely not be my only post on the subject, but I at least want to begin formulating my thoughts on the matter — partly because I expect that this will come up as I begin my studies in human services, and I want to have at least some thoughts lined up.

Let’s start with some definitions. “Person-first” (or “people-first”) language is a formulation used in many branches of human services, education, etc., wherein the individual’s disability or condition is expressed second, after some noun describing the individual: person with autism, for example. A common alternative is called “identity-first” language, which uses an adjectival form of the disability/condition before the noun: autistic person, to continue the example.

The way it is usually presented, the argument for “person-first” language is that it emphasizes that the individual is, well, a person first, and then their condition or disability. It puts forth the notion that a particular attribute is not the person’s identity, but more of a secondary trait. People who insist on this formulation often say we should not let our disability/condition/etc “define us.”

But here’s the trouble: it’s not up to others to decide what defines us. Many of us do consider autism part of our identity, and not as something separate (or separable) from who we are. It pervades our entire way of thinking, communicating, and viewing the world. “Autistic” describes the type of person I am; autism is not some incidental trait I happen to have.

Let me expand on that a moment. My last post consisted of screen shots I took of Google auto-complete search suggestions for various examples of “person-first” language. I found similar suggestions offered by Yahoo’s search engine, as well. Essentially, I wanted to convey a sense of the sorts of things people use this type of phrasing for — in other words, what sorts of things are seen as something one “has” rather than something one “is.”

Looking at those examples, I generally do not consider autism to be in the same category as other things people “have.” Many of these things are temporary conditions: having a fever, for example, or having braces. Autism is not temporary; it is lifelong. Others are things that do not have easily-created adjectives: “children with hair loss” cannot easily be changed to “hair-loss-experiencing children,” or some such. Autism has a ready adjective: autistic. Still other examples are physical traits that could often go either way in terms of language: “people with green eyes” vs “green-eyed people.”

That last one I could make a case for; mixing up the language between “autistic people” and “people with autism” isn’t intrinsically negative in my mind. After all, some people on the spectrum do not consider autism a part of their identity, and prefer person-first language — that’s fine, too. I am entirely in favor of people using whatever language they prefer about themselves. What I do not appreciate is the insistence that only certain language be used about a group of people — and especially not by people who are not in that group themselves.

(I am also in favor of varying one’s language in the interest of euphony, which frankly is another peeve I have when it comes to insisting on person-first language all the time. It’s clunky.)

But here’s the thing: when it comes to eye color, most people don’t, ahem, bat an eye over one’s choice of phrasing. You could say “blue-eyed” or “with blue eyes” and frankly I don’t think most people would notice. People only insist on “person-first” language when the characteristic in question is something stigmatized, something that they think we should distance ourselves from. They say this phrasing helps remind others that we’re people first, because people will otherwise not think so.

A recent article in the Journal of Child Psychology and Psychiatry highlighted this fact, and suggested that the insistence on “person-first” language may serve to accentuate stigma. Where the prescription for person-first language was intended to apply to everyone, it is used more frequently for people with disabilities, and “…is most frequently used to refer to children with the most stigmatized disabilities.” Because of this, it actually highlights the stigma attached to certain conditions, and helps to perpetuate it.

I found this paragraph particularly telling:

“Furthermore, children with more stigmatized disabilities are more likely to be referred to with gifted person-first terms (e.g. gifted children with autism), whereas children with less stigmatized disabilities are more likely to be referred to with gifted identity-first terms (e.g. gifted blind children). For children with two disabilities, the more stigmatized disability is more likely to be referenced with person-first language (e.g. blind children with autism, 94%), whereas the less stigmatized disability is less likely to be referenced with person-first language (e.g. autistic children with blindness, 6%).”

As I said before, I have no quarrel with people who choose person-first language for themselves. I also have no problem with using a mix of language for the sake of variety (though I prefer “on the autism spectrum” as an occasional alternative to “autistic”). But I think the institutional insistence on using only “person-first” language with regard to autism is marginalizing — especially considering that it has been repeatedly demonstrated that there is a widespread preference for “identity-first” language among autistic people ourselves

Autism Appreciation

Ah, yes. Autism Awareness Month.

Once more, we meet again.

(Ok, it really starts tomorrow, but I’m already looking over the horizon in weary resignation.)

Last April was my first time writing about this phenomenon, as it was my first time experiencing it…well, no, not my first time as an autistic person, because I’d been that all along. But it was my first time knowing that I was autistic, knowing that I was one of the people the world was allegedly being made aware of.

Did all that awareness work? It hadn’t up to that point; as I wrote last year, all of the previous “awareness” months hadn’t made me aware that I was autistic, so clearly the type of “awareness” being spread was not so helpful in that regard. From the generally baffled and surprised reaction I’ve gotten from people as I’ve started to tell them I was autistic, it hasn’t helped them become more aware, either. And my continued exposure to mainstream impressions of autism hasn’t convinced me that awareness is growing on a larger scale, either.

So I’m with those who say we don’t need any more of that type of awareness. But we do still need more real awareness — the kind of awareness that comes when we listen to what autistic people have to say about autism. We need the kind of awareness that counters the fear-mongering approach of groups like Autism Speaks, the kind of awareness that would help people like me realize we’re on the spectrum, and help the people around us to understand how we see the world.

I am also with those who say that beyond Autism Awareness, we need Autism Acceptance. It isn’t enough to be “aware” of autism if that awareness leads you to rail against it and treat it as a great burden on society that needs to be cured. Although I would hope that true awareness would not lead in this direction, acceptance is still another step beyond awareness. As Shannon Des Roches Rosa has written, “Awareness is passive. Acceptance is a choice.”

So should we rename April to be Autism Acceptance Month? It would be an improvement, I think, and I fully support those who do so. But I also think we can go another step further, and call it Autism Appreciation Month.

Because just as we need more than awareness, we need more than acceptance. Acceptance can manifest in very positive ways, but it can also manifest in ways that involve one group “putting up with” another group as an act of charity. “I accept your many flaws and love you anyway” is sometimes the vibe I get from that sort of thing. (Not always, but often enough to raise my hackles.) Appreciation, though, requires recognition of our strengths as well as our struggles, of our gifts as well as our “deficits.”

Can we as a society come to appreciate the benefits bestowed by our sensitive autistic senses, our iconoclastic honesty, our deep love of our interests? Can we celebrate the physical and emotional expression embodied in spinning, bouncing, flapping, or rocking? Instead of grudgingly making accommodations, can we learn that making workplaces and public environments more comfortable for autistics makes them more comfortable for everyone, and actually thank autistics for pointing out the problems?

That’s what we really need: a true celebration of our differences, and recognition of how those differences can be a positive force in the world. But I think that’s going to take a little more than one month to achieve.

Approaching Accommodations

Now that I finally understand that I am autistic, and can point to at least some of the ways in which that has affected my life, I am able to rethink many of my experiences in new ways. Like many other people whose autism went unrecognized until adulthood, I feel able to look back with new eyes, especially on those places where I struggled. Just as with words, meaning changes with context.

I am also starting to think about how I can bring that understanding into my present work and home life. Now that I know (at least a little better) what kinds of support and/or accommodations I might need, how can I go about creating or asking for them?

Up until this point, I have gone through life without accommodations — or rather, it would be more accurate to say that I have made self-accommodations. My relationships, my living arrangements, and my employment choices have all been influenced by my own sense of what worked for me and what did not. In most situations I have made changes when I felt things reach a breaking point, rather than continuing on and getting, well, broken.

But the trouble is, outside the context of disability, self-accommodation can easily look like failure; you just can’t handle the things other people seem to be able to. Even asking for accommodation (again, without that context) will often be seen as complaining. And gaining this context for myself doesn’t always help when it comes to support I need from other people, especially in situations where I am not sure how much to disclose.

And now… I’m not sure what else I want to say at this point; I only got this far by sort of thinking out loud. The main thing is that I don’t really know how to do this — after all, I grew up not knowing I even had a disability. And I’m sure that as I start to ask for the things I need, some people will interpret that as meaning that I’m not disabled enough to need supports. It’s a vicious circle.

Of course, the ideal situation would be if everyone, disabled or not, could ask for what they need without being seen as a whiner, a troublemaker, or a burden. We all have our strengths and weaknesses, as well as preferences for how we can do our best work. So let’s just build that world, and this whole question will be moot. Easy peasy. 😉

Beginning With Tears

I didn’t want to start out this way. I didn’t want my first post on this blog to be about pain and tragedy. But today is the Disability Community Day of Mourning, and I did not want to let that pass without a few words.

Last year, at age 43, I discovered that I am autistic. I see this new knowledge as a blessing, a gift of self-understanding and self-acceptance that puts so many struggles and triumphs in my life into better perspective. It helps me to honor myself as I really am, to appreciate my strengths and my neurodiverse perspective while also connecting with others who share similar “wiring.” Yes, there are difficulties associated with autism, but finally knowing that I am autistic helps me manage them and allows me to take care of myself better.

But there’s also no escaping that much of the world does not see things the way I do. They do not see autism as a benefit to society, or even as a neutral difference among human beings. Instead, they see it as a tragedy, as something to be eradicated. They see it as something harmful, as a burden to those who love us — a burden so great that they will even excuse violence done to us by those who claim to love us.

This day of mourning exists because, with frightening frequency, disabled people are killed by their families and caregivers, and society sympathizes with their killers. Zoe Gross explains it better than I could, in her essay, “Killing Words.” (That link opens a pdf document.) All I want to add is that today my heart aches for this new community I have just found, a community that has already helped me so much as I learn more about my place within it.

So for all those in mourning, I stand with you. And for those who would like more information, ASAN’s Anti-Filicide Toolkit is a solid place to start.

(Image of a yellow candle on a black background, with the words “Disability Community Day of Mourning” in white.)