Responding to /Neurotribes/

by KLS

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.).