a parliament of owls

life with asperger's

Tag: asperger’s culture

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.).

Claiming Asperger’s

Many people are wondering aloud these days about why they are hearing so much about autism in general and Asperger’s in particular. It’s legitimate to question why, and whether it’s always been around and in such prevalence. In March of this year, a new U.S. government report claimed that 1 in 50 school children are on the spectrum, higher yet than the 1 in 88 reported in a different report the year before. The March report was based on 100,000 parent surveys, which may be more suggestive of increased diagnoses and request for services than an increase in actual numbers of cases. Even so, the relatively large number of diagnoses raises the concern that autism spectrum disorders are a fad. Within the high-functioning autism community, one effect of this concern is that officially diagnosed autistics or those who love them go after those who are self-identified.

I am a self-identified high-functioning autistic. I do not yet have an official medical diagnosis, although my son has been officially diagnosed. As I describe in an earlier post, I first came to realize I share his diagnosis during the process of developing it in cooperation with staff at a local university psychological services center. I’ve tested this against the Baron-Cohen Autism Spectrum Quotient, which is a diagnostic inventory developed at the Autism Research Centre at the University of Cambridge; it’s so popularized now, it’s even appeared in Wired. Any score of 32 or higher is suggestive of ASD. I consistently score over that. My last evaluation two days ago placed me at 36. I’m now in the process of seeking a medical diagnosis, which I have put off because I had not needed it previously, being well adapted to work and life in general. Besides, achieving a diagnosis for a developmental condition like Asperger’s is no quick feat. It means an initial hour consultation followed by four two-hour testing sessions, as well as completing a long self-assessment questionnaire. And it’s not free; I’m fortunate to have the means to do it through employer-provided health insurance.

It can also be difficult to find a clinician who has expertise in and the availability to do adult Asperger’s assessments. Most clinicians are geared to assess children, which is understandable given that it is a developmental issue that can impact academic success and psychosocial progress. Those of us who seek adult diagnoses now were raised in generations when there was less clinical and social awareness of high-functioning autism, and certainly even that much less awareness again that females might be so diagnosed. Males are still much more frequently diagnosed (at a ratio of 4:1 with autism in general and 9:1 with Asperger’s), perhaps in large part because the main diagnostic criteria for Asperger’s was originally based on cases of boys alone.

Temple Grandin, now a famous instance of a woman with Asperger’s, as well as Judy Endow, an advocate on the spectrum, have both made progress in dispelling the myth that high-functioning autism is a boys’ club. Good work has also been done in recent years on the differences between male and female high-functioning autistics, especially by Tony Atwood. It’s in reading Atwood’s work on girls and women with Asperger’s that I had once again that shock of self-recognition I had experienced during my son’s diagnostic process. Once again I realized that so many of the characteristics I had thought were unique to myself were shared by others on the spectrum, this time female others.

Here’s one striking example: Much has been made of boy’s Asperger’s culture revolving around obsessions with trains, legos, and video games. My own son, now 12, continues to be absorbed in video games and, when he was younger, shared an equal absorption in trains and legos. People outside of the high-functioning autistic community might be quick to say that all boys tend to like these things, but the distinction is in the degree. Boys on the spectrum often show an interest in trains, legos, and video games to the exclusion of any other forms of play (except perhaps other mechanical or construction sets), any other kinds of interests (except a limited number of other obsessions, such as construction machines or insects or extreme weather phenomena), or any other topics of discussion. Girls on the spectrum, according to Atwood, often project themselves into reading, instead, and especially reading in the genre of fantasy. He reasons that girls on the spectrum find power in fantasy, identifying with characters who overcome through their special abilities, as well as finding in fantasy worlds a safe haven from social anxiety. By the time I had finished middle school, I had read Tolkien’s Middle Earth works, including the Silmarillion, seventeen times. I had read his letters and many books on his work, the myths on which they were based, and a biography. I had even kept an encrypted journal in Elvish script. And then, years later, there was a doctorate in British literature with a specialization in fairy tale and fantasy literature. In one of his books, Atwood even names literature professor as a common and effective career choice for women with Asperger’s. My hands shook when I held that book, reading what I had always taken to be the happenstance story of myself told with unlikely accuracy.

I can understand the desire of those already diagnosed with high-functioning autism to want to protect the value of the diagnosis from seeming to apply to everyone who has social anxiety or introversion or a certain nerdy or geeky turn. There seems to be some confusion about how these other qualities differ from this specific developmental condition, which can itself present in subtly nuanced ways across personalities. But I also think it’s okay for people to wonder if this diagnosis applies to them, to be Asperger’s curious or questioning, to use an analogy to LGBT culture. And I think that for many and maybe even most people, the journey to accepting a diagnosis is not an easy one, not when the diagnosis is understood as a potential set of costs as well as benefits. Eccentricity may be charming in short bursts, and adopting an eccentric pose may be fun in certain circumstances, but to be an eccentric by neurological fiat when one desires to be accepted, liked, and even unremarked and remarkable is an uncomfortable thing. There may be those of us on the spectrum who ultimately wear the diagnosis as if it were a badge of honor, who might take it as a point of pride to be different and therefore special, but this is itself an act of bravery and perhaps of defiance from those who have no choice but to live on the social fringe.