Some clinicians call for a broad application of "autismness" that scales from "zero autismness" to "classic autism." This would result in a lot of autism diagnoses.
Others, especially researchers, cling to the DSM-III tradition that autism cannot be comorbid with a known physical diagnosis. This was explained to me in this way: if you know the cause, you can research and treat accordingly. Things we do know to be "medical" are moved out of the DSM on a regular basis. This is a logical strategy for categorizing and treating conditions. You wouldn't study Fragile X the same way you might neurotoxin exposure.
I fall into the "if you know it, classify it" camp. If I know the cause of my condition (and I do), then I should receive medical and educational supports accordingly. "Autism" by itself would be too vague. I have a left frontal lobe incursion from a complicated delivery exacerbated by some other issues. In Minnesota, I am diagnosed with HFA ("autism"), but in California my physical injuries and their expressions were the only diagnoses.
I compare this to "cancer." The term by itself, while somewhat helpful, tells a physician little. However, if we clarify the diagnosis of cancer to the specific type, it can be appropriately studied and (hopefully) treated. "Cancer" is too broad to be medically useful, just as "autism" is often too broad to help determine specific research needed and treatment strategies.
For clarification, my specialty is language comprehension and educational strategies. My research was both on the rhetoric of autism diagnostics and how to best address the language development of students with autism; many of us struggle with the "oddities" of language.
Nothing is odder than being "autistic" in Minnesota but not in my native California. It is one reason I do doubt the label's usefulness except in the most general applications.
Diagnosis is still difficult. Have you heard of the ASDS or ADOS test for autism? It's supposed to be the gold standard.
ReplyDeleteI agree with your cancer analogy. Autism, to me, is very broad and it's hard to quantify, as in insurance codes. There are many different variables and grey areas.
I think the insurance companies will more or less nail it down but it will take years, I'm sure.
Doctors? Ha. They can't seem to agree among themselves.
I've written about the Level 2 diagnostic instruments and their challenges:
ReplyDeletehttp://theautisticme.blogspot.com/2010/06/autism-screening.html
I dislike symptom based, observational diagnostics. I hope we do add to the current list of known causes -- though that list is short and represents a small, small percentage of diagnoses. I dislike the "We know it when we see it!" approach to labels like "autism."
I am impressed with your accomplishments. That gives parents like myself so much hope. My daughter was diagnosed autistic at age 5. No way was I going to let that diagnosis stop us from helping her reach her highest potential. She worked very very hard (so did we) to get to where she is-- a senior in a performing arts high school in New York City, with college in her future. I share some of what we did for her on my blog: tpassione.blogspot.com
ReplyDeleteMy thesis will also contain such a chapter, it's very important to make sense of the whole thing to establish that autism is not such a certain or a rigid category as some would have it.
ReplyDeleteThere is a lot more material around now to cite, and more coming out all the time as autism is now coming under more of a sociological and anthropological conspectus than ever before with clinicians and academics under the researchers microscope as much as we common "subjects"