I suppose, people being people, that other Aspies have tried to explain how the condition affects their functioning in some way, such as difficulty reading non-verbal signals, only to hear, “I, like, get that too, you know: maybe I’m a bit Aspergers.” Even after ignoring the involuntary wince that is triggered whenever language is tortured in my presence, I struggle to respond to that. While I don’t want to dismiss out of hand the possibility that they might be correct, it can be hard to explain how AS (and autism) are about more than being awkward in social situations.
What I want to say to these people – but can’t because my AS makes it too difficult to formulate an adequate response without zoning out for too long and dropping out of the conversation – is that I doubt very much whether they do have AS. AS is not like a salad bar where you get to choose how much of each symptom you want. It’s not something I chose to have – I have it, live with it and cope with the challenges as best I can. Each symptom taken in isolation does not define the condition: it is called a pervasive disorder for a reason. It is a set of symptoms, usually with varying degrees of severity, and having AS means you pretty much got the lot.
What is “the lot”? To quote the Wikipedia article which summarizes the DSM-IV diagnostic criteria,
[…] a pattern of symptoms rather than a single symptom. It is characterized by impairment in social interaction, by stereotyped and restricted patterns of behavior, activities and interests, and by no clinically significant delay in cognitive development or general delay in language.
This doesn’t even attempt to explain why these symptoms occur: it is just a “pattern” that recurs and has been labelled as Asperger Syndrome. The label is a convenience, nothing more, to cover the effects of particular cognitive differences. It does not describe the differences between individuals with AS, the varying degrees of difficulty we face in everyday situations. Couched in the most general terms it says nothing about how it feels from the inside – how exhausting it is to deal with “normal” life, to feel so often that we have to consciously act “normal” with other people so that we are not seen as alien, to face censure for “inappropriate” behavior when we don’t conform to their “normal” standards.
I doubt that any sighted person would describe themselves as “a bit blind” because they close their eyes occasionally. Likewise, they are not “a bit Aspie” because they sometimes feel awkward in social situations or have a fanatical interest in, say, football. There is evidence that the Aspie label is somehow becoming seen as “cool” – I can’t understand why this should be so, because I know first-hand that the reality is that even in a mild form it causes significant difficulties for those directly affected, and also indirectly for those such as partners in relationships.
3 thoughts on “A Bit Aspie”
Here in the US, the New York Times has just run a couple of op-eds questioning Asperger Syndrome and how and why it is diagnosed. The writers seem to be saying that AS isn't really like autism, and that the diagnosis unnecessarily stigmatizes individuals who are simply "awkward" or "nerdy." One major error in one of these op-eds–a common mistake in the media–is using Warren Buffet and George Orwell (often Bill Gates and Mark Zuckerberg are also mentioned in pieces like this) as examples of people with Asperger Syndrome who met with great success without a diagnosis and supports. Problem is, neither Warren Buffet nor George Orwell has/had an Asperger diagnosis. It's disingenuous to make them a part of the conversation. I don't know if Asperger Syndrome is overdiagnosed. I would almost argue the opposite. And the people I know with AS struggle every day to make life work for them. My son has AS, and he has his worst experiences when adults in charge (generally teachers) decide he's "normal" enough to suck it up and act right. This leads to absolutely devastating and embarrassing public meltdowns for my son. These adults are thinking the way these op-ed writers are thinking: The child is just nerdy, and he's smart enough to learn to control his behavior. They don't want to believe that his brain is different, and that he requires a slightly different approach than would be used with another child. How AS became a synonym for "social awkwardness" is beyond me. The social difficulties in AS are far beyond just feeling uncomfortable at a party where you don't know anyone. People with AS often have trouble communicating even with their own family members, and can feel uncomfortable around people they've known their whole lives. It's very, very different from just feeling "awkward" at a party, or being a little too interested in music or books. So maybe it is overdiagnosed! If kids who navigate life perfectly well but spend a lot of time reading instead of playing sports are getting an AS diagnosis, then something is amiss. But a problem like that is with the overzealous clinician who misdiagnosed, not with Asperger Syndrome as a diagnosis. http://www.nytimes.com/2012/02/01/opinion/aspergers-history-of-over-diagnosis.htmlhttp://www.nytimes.com/2012/02/01/opinion/i-had-asperger-syndrome-briefly.html
I saw those NYT op-eds. I find it ironic that while AS is a term that is gaining wider exposure outside the realm of mental health professionals and those affected, it is in the process of disappearing from the clinical vocabulary with the upcoming revision of DSM.As with many terms once they enter the general lexicon it has become diluted and its meaning has shifted from a (moderately) well-defined clinical diagnosis to the point where, as you say above, it is synonymous with social awkwardness.Because of this I am leaning towards the approach taken in DSM-V where AS is subsumed in the wider autism spectrum. At one level I don't think the exact label matters: my main concern is that people who need assistance to get through life can still be identified so that help can be provided.Thank you for your comment.
I have been diagnosed for about 8 months after trying to figure out why I don't understand why my wife is unhappy in our marriage. Everything I talk about comes out as a TASK to her and she wants the meaning behind it.