I thought that I would be steadfastly opposed to the changes. But I was surprised to find myself, after reading some articles and some parent blogs, unsure about where I stand on them.
It's not that I don't believe that the conditions that are most likely to be affected by the the diagnostic criteria for autism (Asperger's Syndrome and Pervasive Developmental Disorder Not Otherwise Specified) don't exist. It's not that I don't share concerns that the proposed DSM-V diagnostic criteria for autism might narrow the definition of autism so that people who would have been diagnosed with Asperger's or P.D.D.N.O.S. might not be any longer, and therefore be denied needed supports and services.
I just wonder if we've built Asperger's especially up in our minds (at least in some cases) as something that requires more supports and services than it actually does. If so, the changes to the diagnostic criteria for autism might actually move us back to a more balanced view of autism and of people.
I think what really brought this out for me was a quote from a mother of a woman with Asperger's saying that she was afraid that her daughter wouldn't get into supportive housing if she lost her diagnosis under the new diagnostic criteria criteria for autism, and another quote from Lori Shery, President of the Asperger's Education Network:
“If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”
"God forbid they experience failure," I thought.
Lessons from "Sheldon"
Sheldon Cooper, one of the main characters on the CBS hit "The Big Bang Theory", is seen in different ways by different people. One group (which includes my father) sees the character's tendency to take everything literally, his apparent lack of empathy and inability to understand social cues and rituals until they're explained to him, his focus on his own set of rituals, and his difficulty with dealing with changes in his routine, as delightfully "quirky."
My friends in social services and I see him as a wonderful study in Asperger's syndrome, although it's never been mentioned in the show. It doesn't matter. Sheldon has his own group of (non-disabled) peers, including a roommate, a girlfriend, and friends at work. His "quirks" sometimes drive them crazy, but they've developed ways of dealing with them.
Sheldon doesn't always thrive in the "real world", by any means. His difficulties relating to people and understanding social conventions cause him setbacks, and he doesn't always understand what has happened and why. But he functions in his job and his relationships, without a diagnosis and without any formal supports.
I'm really uncomfortable with the idea that social services' role is to protect people from failure, or surround them with so much support that they can't be "quirky" anymore. Because people with disabilities need to learn how to deal with failure, just like the rest of us...and part of making society truly inclusive is learning to deal with other peoples' "quirks", whether there's a diagnosis attached to them or not.
Asking Tough Questions...
To be clear: I'm not denying that Asperger's Syndrome and P.D.D.N.O.S. may present challenges that require support. The proposed changes to diagnostic criteria for autism for the DSM-V need to take into account that some vital supports, including respite, require a diagnosis, and researchers need to question whether their plan to use one set of criteria to diagnose all the autism spectrum disorders actually captures the full range of the spectrum. For our part, as parents, educators, advocates, and agency workers, we need to ask ourselves some questions before we start to panic about the implications of the new diagnostic criteria for autism:
- How are our attitudes toward and perceptions of autism and disability affecting our reactions to this news? Is our thinking accurate in all areas?
- Regardless of whether the new diagnostic criteria for autism goes through, how do we teach society to see the person before the diagnosis, and realize that there are people out there who (for a variety of reasons) have trouble in social situations? Sometimes that's just who people are...
I need to do some more reading on the proposed changes to diagnostic criteria for autism. I'd like to hear other peoples' thoughts. Click these links to learn more about the proposed changes and their potential implications:
And more on "The Big Bang Theory": http://www.cbs.com/shows/big_bang_theory/