The DSM-5 is due out in 2013, and it’s official: Asperger’s is no longer going to exist. It will be merged with autism and PDD-NOS into a broad category of Autism Spectrum Disorder, with a “severity” numeric scale to help indicate what services are a good starting point. You can read more about this here at the DSM workgroup.
This change has led to a huge uproar within the autism community. The blogs I like and tend to read are mostly on the autism hub, and for the most part everyone there seems to agree that this is an excellent change. There’s no clinical distiction between AS and autism; the usual differentiation in diagnosis is the age of diagnosis and verbal skills (if you could speak relatively on time as a child or are being diagnosed at a later age or adulthood, AS tends to be the label). These are not good precitive measures of how a child diagnosed as autistic or AS will fare later in life, and an adult with excellent verbal skills may still lack intuitive social understanding or have extreme preoccupations and interests at a level surpassing adults who were diagnosed in childhood with autism. The new criteria seem pretty loose so far, and should encompass the whole spectrum of diagnosable individuals; I do meet the new criteria (though their vagueness took me a while to parse and work out which of the old criteria alligned where).
However, there are a large number of people on the spectrum currently carrying an AS diagnosis who are PISSED OFF. They don’t want to be lumped in with “them”–those autistic people, who you know are totes retarded and need diapers and just stim on string all day.
This, children, is called prejudice, and it’s bullshit.
See, the autism spectrum is broad–probably as broad as the neurotypical spectrum. It covers a range of traits, some contradictory, a range of IQs, a range of self-help skills. A person can be a genius with no ability to converse or remember to bathe, or intellectually disabled with fastidious hygiene and many compulsive behaviours. A person can be me: almost 25, graduate school educated, with a handful of close friends, with poor eye contact, obsessive interests, and some trouble working out emotions and social skills.
To paraphrase Ari Ne’eman, who I think got it very right: My identity isn’t about having AS, it’s about being on the autism spectrum. I don’t care what you call it, it is a huge relief to know that my collection of difficulties and strengths has a name, and there are people like me. I welcome this change, because I welcome the chance to show more people that autism is a spectrum, and we all deserve the help we need to be the best people we can be. I’m not ashamed to be on the same spectrum as kids I work with, or the adults they will grow into, because they are fundamentally human and we share overlapping traits.
Ultimately, I think the autism label will shatter as we find biomarkers for different subsets of persons on the spectrum–this genetic biomarker is linked to these autism spectrum traits, this one to these other traits, and so on. But for now, autism is a behaviour and thought driven diagnosis, and I welcome the inclusion of the spectrum into medical practice.
For more reading on this topic (by no means an inclusive list!):
Bev at Asperger Square 8
Sarah at Cat in a Dog’s World
Left Brain/Right Brain
Sadder but wiser girl at A Time Will Come
Joey and Andy’s mom at Life with Joey
My name is Ali, though sometimes it's Eliot.
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