The Value of a Diagnosis of Asperger’s

In a recent post I said Marcia Angell was too hard on psychiatric diagnosis. Long before perfection, diagnoses can be useful. For example, Alexandra Carmichael recently found out she has something close to Asperger’s Syndrome (note that she has not been diagnosed by a doctor). She explained why:

I feel like at least I’m on the *path* to a much smoother life now – whether I’m there or not can be debated. 🙂 Learning about Asperger’s has illuminated sensory and social sensitivities that I didn’t realize other people *didn’t* have. It was understandably confusing to live in a world where I thought I was defective because I couldn’t do what other people were doing as easily. Knowing that there is a subset of people who experience the world the way I do has been liberating, and seeing how other “aspies” modify their lives and routines to suffer less has helped me make helpful structural changes in my life, too.
For example, right now I am wearing my Bose QC 15 headphones on a flight from Boston to San Francisco, because I know that too much sound in a day can make me incredibly weak the next day. I’ve arranged to do 90% of my work by email and chat these days, with the occasional in-person meeting, because I know that my auditory processing is not great for phone calls, and it takes me days to prepare for and recover from a social meeting/event. I say no to most things I get invited to (conferences, dinners, etc), because I prefer to contribute my thinking/organizing/connecting talents online and reserve social energy for one-on-one time with close friends. I’ve also become aware that my ability to listen and empathize with people is powerful and something I enjoy, maybe in part because I build such intricate models of everyone I meet, so my purpose in life has become to listen and help where I can. I only wear comfortable clothes, because my mood will suffer terribly if I have jeans or high heels on. I give and receive lots of hugs, because these are very calming for me. I have a very detailed daily routine that I follow, which reduces cognitive load used to consider options every day and feels comfortable for me. I’m much more aware of my weaknesses, especially regarding relationships, and am very careful about communicating clearly and non-violently, making sure I have a good understanding of both my needs and the needs of people around me – so that I can help, or at least not harm them.
So things like this have all come about because of trying on the Asperger’s hat for a while, and the increased self-awareness that came with it. After a certain point, you can drop the label and integrate what you’ve learned into your identity. But for me, having the label for a while was a guide and a relief, helping me realize that it’s really ok to be myself.

4 Replies to “The Value of a Diagnosis of Asperger’s”

  1. It’s quite inspiring to read how knowledge about Asperger’s has improved this woman’s life. I’m puzzled by your raising it in the context of Angell’s views on psychiatric diagnosis, given that Ms. Carmichael seems to have benefited most from the classification of a set of experiences, abilities, and limitations she has as part of a human “type” that allows her to feel at peace with who she is and organize her life according to what works for her. She has not even been diagnosed by a doctor! This speaks much more to the power of making the ideas and findings of research accessible to the public. An important question is whether that research could be produced without the diagnostic apparatus. Probably not if we mean a system of organizing and classifying phenomena, but that’s not really at issue in the debate.

    1. Asperger’s is a psychiatric diagnosis. Created in the context of psychiatric diagnosis. “This speaks much more to the power of making the ideas and findings of research accessible to the public.” Well, who knows about “more”, but yes, it also suggests the value of doing that. Alex’s experience required both A (psychiatric diagnosis) and B (making ideas accessible). That B matters doesn’t mean A doesn’t matter.

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