Sunday, June 27, 2010

Guest Post: Ambiguous Neurodiversity

Please welcome my college friend, Dave, who has written this guest post.  Dave is an accomplished musician and tech-savvy guy (and hey all you Boston-area ladies: he’s single!) who is struggling with his self-identity as he ponders an adult diagnosis of Asperger’s Syndrome.

This post grew out of a conversation about “ambiguous neurodiversity,” the state where one’s place between The Spectrum and Neurotypical is unclear. It’s the dilemma of being in a position where society’s general insensitivity towards issues of neurodiversity marginalize you, but not in a clearly identifiable position to benefit from the support networks and legal protections available to “truly” neuro-atypical individuals.

Anyway, the short version of my story is that I am an Aspie. Or I might not be.

The long story is quite a bit more complicated.

In undergrad, I went through teacher prep, and I worked three hours a week for a semester with kids aged 3-6 with PDD, autism, and other cognitive and behavioral challenges. I also had a close friend in town with a very low functioning autistic brother in his late teens. I knew the difference between Rainman and real-life autism. But that was 1995; almost nobody was talking about AS at the time.

Since my early experience and exposure to spectrum disorders, I have on occasion described some of my own behaviors and personality traits as ‘autistic,’ and once in a while I’d even ponder the possibility that it was more than an adjective. But that sort of ideation was always the fantasy of a self-diagnoser, or so I felt. The possibility that I could live with a spectrum disorder for 35 years without knowing it left me shocked, incredulous, angry at my parents for not recognizing the childhood patterns that precipitated my difficulties in adulthood, and… intrigued, curious, optimistic? A new door was in front of me, with new possibilities.

I brought the question of an AS diagnosis up with my therapist, and she quickly expressed her strong feeling that my primary diagnosis was depression. And thus began the wandering and wondering, unsure whether to trust a specialist with no more education than I have, but who has, presumably, helped clients with spectrum disorders in the past? Or my M.D., whose only experience with spectrum disorders is as the mother of an Aspie (who she says I remind her of)?

During this time, I came to realize an AS diagnosis would mean a lot to me. It would mean trying different avenues of therapy. It would mean access to a community that would understand the cognitive differences that my friends, family, coworkers, even my therapist, seemed unable to “get.” And it would explain a lot of things about my past and present experience, things for which I was, and am, desperate for an explanation.

It’s important to emphasize the sense I had during this period of not knowing who I was, what kind of brain I had, even whether the problems I perceived were real or imagined. This sort of ambiguity has a tremendous impact on me. If I am not sure what’s going on or am entering an unknown or unfamiliar situation, in any context (macro- or micro-cosmic, internal or external,) I become extremely uncomfortable and experience a high degree of stress. I think everyone experiences this; I don’t think everyone is paralyzed or overwhelmed by it, however.

But as I drifted through doubt and ambiguity, certain things started to click. The resonances began to overcome the dissonances. I found a quiz with more detailed questions, and a much more detailed analysis of the results, than previous tests I’d taken. On other tests I answered “no” to Clumsy, but on this test I answered yes to “do you have difficulty catching or hitting a baseball.” On other tests I answered “no” to lacking empathy, but on this test I answered “yes” to “do people get angry with you and you don’t understand why?” And so forth. And so two weeks ago I brought the results to my PCP for her to review.

I spoke to my therapist again on Thursday, June 17th. She reiterated her doubts but expressed openness to discussing it. The sticking point for both of us was the empathy issue. I strike her, and myself, as a highly empathetic person, and that is a pretty big contra-indicator for an AS diagnosis, or so I understand. But on Friday, I reviewed the results with my doctor, and she said what was already in the back of my mind about the empathy issue – that I’m an intelligent individual and I’ve adapted; I’m perceptive, and nurturing, and kind, and have learned to intellectualize an empathetic response where real empathy fails me.

In any event, perhaps ironically, perhaps auspiciously, on June 18th, 2010 (Aspies for Freedom’s Autistic Pride Day,) my doctor gave me a “working” diagnosis of Asperger’s Syndrome. I’m still not 100% convinced without a second opinion, but I am excited to be this much closer to having a slightly more certain and totally different perspective on the difficulties I’ve faced throughout my life.

The Autism Spectrum is just that – a spectrum. You’ve got individuals who are unable to take care of their most basic needs, like my friend’s brother; you’ve got individuals who are very high functioning but clearly display visible symptoms, and then you’ve got the infrared and ultraviolet bands of the spectrum – the invisible, ambiguous borderline cases, like mine. What it comes down to, for me, is that whether my brain proves to be a bona fide hair-dryer, or actually turns out to be a curling iron, or a waffle-maker, one thing is clear: my toast = epic fail. And not knowing why makes it all the more frustrating.

Everybody experiences challenges in life which only they can know, and I'm reluctant to compare mine to anybody else's. But I hope that sharing my experience has shed some light on what it’s like in the margins of the spectrum.

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