The Diagnosis Formerly Known as Asperger's

In the months after my young son was identified as having Asperger syndrome, I wondered whether he would outgrow his diagnosis. I never imagined that his diagnosis would outgrow him. Still, that’s happening with changes to the diagnostic criteria and terminology relating to autism. This is far more than a medical technicality. For autistic people and their allies, the issue is packed with implications for identity, community, and access to education and health services and legal protections. Raging opinion has long since burst the banks of the autism blogosphere and spilled into the mainstream media.

Fragments of the debate over autism terminology

The revisions to the Diagnostic and Statistical Manual of Mental Disorders by the American Psychiatric Association are a worthy attempt to simplify and clarify the diagnostic criteria and terminology for autism. Forgive me if I don’t lovingly embrace them. The proposed changes are radical, and clumsy handling by the APA has not helped them go over. The fifth edition of the DSM is due out in May next year. Among its various revisions, it will eliminate Asperger’s as a formal diagnosis and fold Aspergerians into the broad Autism Spectrum Disorder category. (And, in theory, people diagnosed with Pervasive Developmental Disorder Not Otherwise Specified — although some seem destined for the new Social Communication Disorder diagnosis, which the APA insists is not a form of autism.)

When my son was born in 1996, the Asperger’s diagnosis was only two years old. Asperger’s Disorder, as it is known in the inherently pathologizing terminology of the APA, had been formally introduced to researchers and clinicians in DSM-IV, published in 1994. This followed years of demands from autistic people and their allies for due recognition and support. Nevertheless, the principle of the new umbrella autism diagnosis makes some sense. Plenty of Aspergerians have already put themselves into the autism category, resisting the Asperger’s label for admirable reasons that I’ll look at in my next post. But at the Asperger’s Association of New England (AANE), based in Watertown MA, where I serve on the Board of Directors, we witness the value of the Asperger’s diagnosis to many — and I’ll get to their reasons too.

The arguments over the Asperger’s label don’t align neatly with the usual autism factions. Some who reject it are motivated by inclusion and solidarity. Others appear to do so for reasons of exclusion and hierarchy. Needless to say, these groups aren’t snuggly bedfellows. Autism politics has been a treacherous business since long before the APA launched its latest debacle. Planning this blog, I’m thinking about the importance of not unfairly judging people whose experiences and perspectives I don’t share — and I’m uncomfortably aware that this decision could itself look like an unfair judgment on others.

What am I doing here, anyway? I’m the non-autistic parent of an Aspergerian-slash-autistic teen son and a typically developing tween. My friends include autistic adults who provide generous consultation services on all matters autistic (actually, on all matters) and straightforward (read: polite yet merciless) feedback on my rough drafts. They'll make frequent appearances here. I’m a consumer of online coverage by self-advocates who engage with and tolerate me in varying degrees. I chair a fledgling Advocacy Committee at the AANE and edit its recently re-launched blog, AspBlogosphere. My involvement with the AANE inevitably influences my perspective, although my posts here do not represent its positions. And I’m part of a committee responsible for a pioneering Standardized Patient program at Tufts University School of Medicine, Boston, in which autistic people educate medical students about autism and the barriers to health care they encounter. My professional background is in journalism, I’m a candidate for a Masters of Science at Tufts, and I welcome good faith feedback and criticism. I’ll be reporting and remarking on issues, events and research affecting the Asperger’s community — families, friends, clinicians, and (primarily) people with Asperger’s and related profiles, regardless of which diagnostic label works for them. That which we call a rose by any other name would smell as sweet.

I’m reminded of the traditional chant on the death of a monarch, which acknowledges the immediate transfer of sovereignty to the heir. “The king is dead! Long live the king!”

And so:

“Asperger’s is dead! Long live Asperger’s!”

The fine Aspergerian mind will always be with us. As for the label, I’ve a feeling it won’t easily be wrested from those who find it helpful. I envision my son as an old man in 2070, croakily confiding that he has Asperger’s — or autism. And I’ll guess that whichever terminology he favors (and if we’ve done our jobs right) whoever’s listening will have a pretty decent sense of what he means.