The question was asked by a friend who had read the latest stories on the DSM-V and the criteria changes for autism spectrum disorders. See this New York Times article:
http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html
I've written a great deal about defining autism so you might assume I care a great deal, personally. But, as I have written several times, "autistic" to me is a description of some traits but not the entire me.
My doctoral thesis included a long section on definitions of autism and the challenges of labels. My Ph.D does include the word "rhetoric" and a part of me does ponder the nature of labels. But, caring intellectually is not the same as passionately identifying with a label.
Autism is a definitional issue.
- 1980: DSM-III adds "autism"
- 1989: First criteria for Asperger's published
- 1991: IDEA adds autism category to K-12 special education codes
- 1994: DSM-IV error expands autism ("and" becomes "or" in criteria)
- 2000: DSM-IV-TR corrects 1994 edition
- 2004: IDEA revised, slows increase in cases
- 2012: DSM-V to be finalized, December 2012 (narrower criteria, in theory)
No one, at least not to my knowledge, labeled me "autistic" before 2006. Though my blog is The Austic Me, it was created during a class project and the name was not my first choice. I was going to use "Inklings of..." but there were many "inklings" on Blogger. Using the autism label was a statement, yes, but also a question of sorts. What is the "autistic me" if I'm still the person I was before the label?
I keep intending to update my IDEA/OSEP data spreadsheet, which would illustrate a slower increase in diagnoses, but still an increase. What would help is to overlap this with a percentage change chart, since population grew markedly from 1995 to 2005. Population growth has slowed during the economic slump since 2007, though we continue to grow in the South and West as a nation.
The basic point remains: adding Asperger's Syndrome, broadening diagnostic criteria ("or" is far more inclusive than "and" in a checklist), and a new generation of diagnosticians/clinicians better trained to diagnose autism has expanded the numbers in a significant way. This does not mean all increases are the result of definitions and awareness, but these changes contribute.
An example is that "no one" died of breast cancer, officially, until Janet Lane-Claypon published a comparative study in 1926. Before 1926? Nobody was tracking cancer rates, especially of breast cancer. As technology improved, diagnostics improved, and medical education improved, we found more cases of breast cancer. We cannot say if cancer rates increased or not, at least not with any certainty, before we started collecting reliable data. But what are reliable data?
If we find the specific causes of several different "autisms" and the spectrum becomes splintered into known medical conditions, some undetermined etiologies, and some other diagnostic labels, that won't mean that the "autism prevalence rate" was magically reduced. It means we changed the definition.
Back to the central question: What if I'm no longer "autistic" in 2013?
For some families this could mean a loss of services and supports. For me? It wouldn't mean much of anything, but that does not translate into not caring about those at risk of losing educational and social supports. It does mean that my personal life and work life will not be altered in any significant way.
Someone might then respond, "See! You're not autistic!"
The "autistic me" is shorthand, a definition that encompasses some, and only some, of my traits. My other physical and neurological conditions will still exist and maintain my status as "disabled" according to U.S. law. My palsy is not going to be cured. My paralysis will not vanish. My vision will not be restored. I'll still need a cane some days and I'll still walk with a pronounced limp. I'll still be whatever I am.
The debate about "autism" as a definition isn't going to end with the publication of the DSM-V.
I won't stop having my "autistic" traits if some book changes the definition. The traits will remain.
Also, and we should admit this openly, good clinicians care first and foremost about patients. They will use the DSM, any edition, as required by government agencies and insurance companies, but that doesn't always mean applying the DSM rigidly. Obtaining appropriate supports and services might mean applying a label from the text that isn't an exact match. Clinicians will tell you that the DSM is a guide, not an inflexible force of nature.