a parliament of owls

life with asperger's

Tag: asperger

Responding to /Neurotribes/

I’ve just finished reading Steve Silberman’s Neurotribes. This book creates the first comprehensive history of autistics, linking us to our progression of diagnosis and treatment in the West and to other cultural groups including the disability activist movement (within autism, first dominated by parents and then taken up by ourselves) and electronics / computer / ham radio / internet and sci fi-fantasy fandoms (which gave us a home among other eccentrics — my husband and I have long called sci fi-fantasy fandom our “tribe”). The first third or so of the book hit me hard — it was difficult to get through — because of the misunderstanding and mistreatment of people on the spectrum (dehumanization, extermination, institutionalization).

The overall narrative moves from how we were defined by others, through the lens of pathology, to become defined in cooperation with others as well as by and for ourselves. Some of the writing is feel-good glib (too neatly concluded, too optimistically joined — he loves a hero narrative) and the author definitely takes sides on some of our internal controversies (sides I usually agree with, but sides nonetheless). For example, not everyone diagnosed with autism feels comfortable with its being understood as either a major filter for our perception / cognition or as the/a crucial dimension of our subjectivity / social identification.

Why does this matter? Because, by extension, not everyone diagnosed with autism wants to be part of a community of autistics or wants to belong to a cultural group identified with autism. Even those of us who do have our limits. Silberman seems to think that these are by default good things, empowering things — he has an extrovert’s bias. Community is always already positive, desirable, even to the point of nostalgic fantasies of autistics meeting in conventions and grokking one another, sleeping in public near one another, stimming together in hallways — I can’t tell you how uncomfortable these descriptions of communal experiences made me (head for the hills!).

Despite discomfort with the rather emotional and physically embodied models of community Silberman evokes, I spend hours each week giving anonymous advice online to other autistics and their loved ones and benefit from feeling a part of that community because it has helped me to understand and accept myself. At the same time, my son would rather not be part of the community, or even think of himself primarily as autistic, but pass as neurotypical because that helps him to feel unremarked and capable. Both can be decent options as long as the clinical label isn’t used to exclude, reduce, and deny (as it has too often in the past and sometimes continues to do in the present).

But Silberman also champions the cause of neurodiversity and its value to society. Although that is often reduced to its practical benefits (ala Temple Grandin), maybe that is a start to others accepting that humanity benefits when we broaden our sense of who matters (all of us) and how we ought to treat them (with kindness and inclusion). For this and for the comprehensive history of autistics told here for the first time, this is truly a valuable book, one that expands our potential for understanding difference along a different vector than we usually think of and are more familiar with as a general society or as academics (race, gender, class, sexuality, religion, etc.).

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Missing Signals: How People in the Workplace Let You Know You are “Different”

My current workplace has made a major commitment to “multicultural competency,” embracing diversity and inclusivity in the broadest sense — the way only a mental health provider embedded within a major public university can. Now that I am “out” at work as a person with Asperger’s, you would think — if people were walking the walk instead of just talking the talk — that they would be supportive of my neurodiversity. Some are. But some aren’t even trying to break a sweat, and this post is devoted to one means in which they signal their discomfort with my difference — or, rather, with the behaviors that result from it.

Earlier today I attended a “Multicultural Competence Committee” meeting, in which other new employees and I were oriented to the professional and personal development we’ll do over the next year in order to grow in this area. Let me say that I embrace diversity and inclusivity wholeheartedly. I don’t know that at this stage in my development I require a formal intervention, but I’m willing to see what’s possible. At the start of the meeting, we were invited to share our complex identifications with one another. Several people went before me (I chose to wait), and I enjoyed getting to know them better and learning their self-understanding and how it had evolved over time. For most people, race and gender were important identifications. For me, they have always seemed imposed from without rather than accepted from within. I explained this, and a number of other identifications in which I’m invested when I noticed the Chair look at the clock. I realized I’d gone on too long and wrapped it up. It might have been a kindness if he had given a more explicit signal sooner, since we Aspies can work up a monologue when a topic interests us — and cultural identification (my own and others’) is one of those things for me. But he meant to be kind, and that counts.

So what does the next person do? Does she begin her own story straight away? No. Like many people I encounter who believe I’ve violated a social norm, she indirectly announces that fact. She starts her statement with something like, “Well, I could go on with my story for twenty minutes or more, but I’ll keep it short and focused. There’s a lot more I could say, but I’ll just say that…” Ah. Now that got through, even in my dimmest moment. She has called me out. She has complained. She has done this indirectly, and in a fairly neutral tone, so it doesn’t seem that I can challenge her — nor would I, really, since she has a point. But the why of it troubles me.

Why, with her knowing that I have Asperger’s, does she still feel so put out that she must say something to the group to make the moment worse rather than better? Couldn’t she pull me aside later, if she really needed to say something? And, ironically, why would she do this in a forum designed to promote the acceptance of difference?  A possibility is that even though she knows I have Asperger’s the social deficit it imposes so closely mirrors intentional lapses in etiquette or social awareness that her default response is to take exception. That’s why Asperger’s is often called an “invisible disability.” We look normal, but we’re not. When I get caught up in a topic of interest (some call it an obsession), I enter a kind of flow state. I am transported somewhere else. Because I’m a professional with decades of practice in the world of work, and because I want to be the most pleasant and least annoying companion possible, I usually remember before it’s too late — I follow the time, or monitor my listeners. That’s how I noticed the Chair looking at the clock. But it’s not a strength, let’s say, even with so much practice.

This can happen even when I am asked a question. The detail, specificity, and intensity of my answer can make other people nervous, bored, annoyed. That happened at lunch today. One of the new staff asked a question about a notice he received about his utilities. I explained the concept of power aggregation, how it had been a subject of local city / county voting (aggregated plans leverage the collective bargaining power of consumers to reduce rates) now that it was permitted under recent changes in state law. He accepted the information well, since he was interested in making a prudent financial decision about his utility plan, but the other people eating with us went afterwards into long sweeps of how the question was so complicated and detailed they could not possibly form an opinion on it. I had just explained all of that to him, and recommended in favor of remaining with the aggregated plan, so what were they really saying? Their response was over-the-top dramatic enough that I believe they were expressing their pain at having to contemplate the details they had previously avoided as too dull and/or confusing. But again, in the form of an indirect, publicly aired complaint.

These co-workers also know that I have Asperger’s. I wonder if I was less tolerant of their differences what kind of indirect comment I might make about them in public? That kind of comment would certainly be less socially acceptable to make. And so we find that there is still a ways to go in understanding and even further toward acceptance.