What if you aren't autistic anymore?

What if you aren't autistic anymore?

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. 


Comments

  1. My eldest's dx read's "a mild form of ASD" so technically... we'll still qualify. Reality is, by highschool - 2013 - it'll be gone and he'll manage without it.

    I personally, am looking forward to the changes. Yes, the eldest has "issues" still, but he has outgrown the "autism" label with approrpriate education, speech therapy, social/behaviour teaching.

    My youngest will qualify. He is on the more severe end but unlike some bloggers with severe children who are upset about the changes, he has made huge gains in communication and education. He would fall under "moderate" in a safe place like home/school classroom. He would qualify as "severe" in public. Although I was surprised that he did talk to the piano teacher on Tues (1st lesson)... not easily, not often, but he did managed some "yes/no" answers. Again, better every day.

    Yes, I think it's time the autism dx returned to being a "disability" and not a "way of being".

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  2. I loved this post - very insightful and thoughtfully expressed.

    My boy has Aspergers and I can see how the changes might affect people like him so far as funding for services goes. But as you pointed out, the DSM is a guide only. As always, it is degree of impairment that is the prime consideration. Will that change much? I don't think so. If your child has some sort of problem, the services will still exist and the help is there no matter what diagnosis you get (or don't).

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  3. I was hoping you would share your thoughts on this subject. I’ve commented before so this might sound familiar, but my 25 year old son was diagnosed with PDD-NOS but not until he was 22. He started exhibiting delays at 18 months. Doctors and educators could never come up with a label because he didn’t fit into a nicely defined category. The “label” became important when he started school because he needed special education services but without a label he couldn’t qualify. I fought with them using the argument, “it’s obvious he needs help. It’s not our fault you can’t define him?” Common sense prevailed (we invented “Globally Developmentally Delayed”) and I made sure he receive whatever services he needed either through the schools or privately. He qualified for SS benefits at 18 years old and still receives career services through our state.

    I guess what I’m wondering is, are there autistic folks out there who can only be helped by autistic support groups? Would they not qualify for other services like my son did/does?

    As you said much better than I can, autism is just a definition. If someone no longer fits the narrowed description of autism, it does not change that fact that they are challenged in some way(s). And they are not going to disappear. Maybe by narrowing the definition, professionals will be encouraged to find a new definition for folks like my son (even though we didn’t need one to know he needed help). I propose, “Wonderfully Different.”

    In all fairness, when a child is sick or not typical, a diagnosis can be of solace to some parents and I’m sure can lead them to others they didn’t know were dealing with similar issues. But you don’t have to have a label to know your child is not walking on schedule or is obsessive about things or is socially inept. Treat what you see. I doubt I would have done anything differently if he'd been defined as autistic when he was 2.

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  4. I can't say if support groups are the "only" help for some teens and adults. I'm sure some feel those groups are essential and part of their identities. "Autism" is something I have neither fully embraced nor rejected, any more than I consider "palsy" a definition of me.

    Did "autism" change anything? Would losing the label change anything? It might have been helpful for my wife and the university disabilities office. I suppose it was.

    I didn't name the blog, "The autistic, brachial plexus injured, partially paralyzed, dystrophy challenged, seizure enduring, mentally gifted, me." Of the labels, the only one that seems to have a "culture" attached is autism. Not sure why that is, or maybe I simply never saw the other descriptions as connected to communities that do exist. I'm in my own little world, I suppose.

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