Defining my disorder

This was an interesting NY Times op-ed ("Defining My Dyslexia") of someone's firsthand account of dealing with dyslexia and coming to see it as having both helped and hurt him in his life. I thought there were some interesting parallels:

Last month, at the Emily Hall Tremaine Foundation Conference on Dyslexia and Talent, I watched several neurobiologists present evidence that the dyslexic brain, which processes information in a unique way, may impart particular strengths. Studies using cognitive testing and functional M.R.I.’s have demonstrated exceptional three-dimensional and spatial reasoning among dyslexic individuals, which may account for the many successful dyslexic engineers. Similar studies have shown increased creativity and big-picture thinking (or “gist-detection”) in dyslexics, which correlates with the surprising number of dyslexic entrepreneurs, novelists and filmmakers.

The conference’s organizers made a strong case that the successes of the attending dyslexic luminaries — who ranged from a Pulitzer-winning poet to a MacArthur grant-winning paleontologist to an entrepreneur who pays a dozen times my student loans in taxes every year — had been achieved “not despite, but because of dyslexia.”

It was an exciting idea. However, I worried that the argument might be taken too far. Some of the attendees opposed the idea that dyslexia is a diagnosis at all, arguing that to label it as such is to pathologize a normal variation of human intellect. One presenter asked the audience to repeat “Dyslexia is not a disability.”

On what role people with a disorder should have in helping to define that diagnosis:

At the heart of the conference was the assumption that a group of advocates could alter the definition of dyslexia and what it means to be dyslexic. That’s a bigger idea than it might seem. Ask yourself, “What role should those affected by a diagnosis have in defining that diagnosis?” Recently I posed this question to several doctors and therapists. With minor qualifications, each answered “none.” I wasn’t surprised. Traditionally, a diagnosis is something devised by distant experts and imposed on the patient. But I believe we must change our understanding of what role we should play in defining our own diagnoses.

Before I went to medical school, I thought a diagnosis was synonymous with a fact; criteria were met, or not. Sometimes this is so. Diabetes, for example, can be determined with a few laboratory tests. But other diagnoses, particularly those involving the mind, are more nebulous. Symptoms are contradictory, test results equivocal. Moreover, the definition of almost any diagnosis changes as science and society evolve.

Diagnostics might have more in common with law than science. Legislatures of disease exist in expert panels, practice guidelines and consensus papers. Some laws are unimpeachable, while others may be inaccurate or prejudiced. The same is true in medicine; consider the antiquated diagnosis of hysteria in women. Those affected by unjust diagnoses — like those affected by unjust laws — should protest and help redefine them.

I like that part, particularly "Diagnostics might have more in common with law than science. Some laws are unimpeachable, while others. . . inaccurate or prejudiced". He mentions as an example the role that people with autism have had in helping to change the common understanding of what that disorder means, particularly outside of clinical settings in which most disorders are studied. Once people started coming forward in droves as having autism, it helped spawn the neurodiversity movement and got people to challenge their false assumptions.

Some people might balk at  efforts to redefine disorders (particularly one as nefarious sounding as sociopathy) as not being all bad or even having positive effects on both the life of people with the disorder and the world around them. I don't see why, though. Wouldn't you want to think that people (even sociopaths) are not all bad? That they have special skills that could benefit society? That they might also have rewarding lives? I guess I just don't ever see the long term wisdom in further marginalizing already fringe  groups.