Being Redefined

No matter what parents like me say, or what advocates say, the Diagnostic and Statistical Manual of Mental Disorders is going to redefine Asperger’s and autism when the new version, the DSM-V is released later this year or early next year.  As it is now, the DSM-IV has a broader category of autism spectrum disorders, of which Asperger’s belongs in the higher functioning area.

When I first starting reading and researching this, I found myself already having my mind made up about where I stood.  In my mind, this was a terrible thing.  And then I took a step back and relaxed and did some further investigating.  While I may not be totally convinced of the reasoning for the changes, I at least understand some of the rationale.  It basically came down to how it was presented in some of the articles I read, and you can click here and here to read a New York Times article or an article from NPR.

The way the material was presented in the Times left me a little upset.  It seemed to focus on more of the negatives of a new definition, such as the possible number of individuals that may lose services because they are considered disabled now but may not be with the changes.  Or the people who may lose protections under the Americans with Disabilities Act, or students that may be removed from specialized services in school, or have their IEP discontinued.  All valid concerns, I think, and my hope is that the impact will be minimal.  The most troubling part of the article is the quote from Dr. Fred R. Volkmar, the director of the Child Study Center at the Yale School of Medicine regarding the increase in those getting an autism diagnosis: “We would nip it in the bud.”  Spoken like someone who could care less about people in general.  Dr. Volkmar presented some flawed numbers to back up his “nipping in the bud” claim that showed about 75% of those with Asperger’s would no longer qualify as being autistic; of course, he bases his claim from the analysis of data that is nearly 20 years old and was collected by doctors who were not fully aware of what behaviors the definition required.

The NPR article was a little more reassuring.  It summed up the changes as ones that will help un-blur the lines of a diagnosis.  Because an Asperger’s diagnosis currently relies on the evaluation of a person’s language skills, the criteria are rather subjective.  The new definition will help to eliminate the subjectivity of an evaluation.  As Roy Richard Grinker, the father of a daughter with autism, is quoted in the article, “I want to be able to turn to the official criteria and see a description that sounds like my child.”  He goes on to note that he believes that “almost anybody with an Asperger’s diagnosis also could qualify for what is called autistic disorder” under the new definition, meaning that most people would not lose the services they are currently receiving.  And because there are some states that provide services to children with autism but not those with Asperger’s, the new definition could open up services to more people.  Quite the contrast to the Times article information.

The big question is: What does all of this mean for Kaitlyn?  The answer is, it means nothing will change.  Amber and I know who and what our daughter is, and we could not be happier.  We know that she is “different” than other kids socially, and a change in a scientific definition will not change that in her.  I am fairly certain that she will qualify as autistic under the new definition, at least when I compare her diagnosis to the proposed new criteria.  A new definition will not change how we go about raising Kaitlyn; we were introduced to a whole new understanding of her at this time last year, and we are better parents for it.  We were never going to let her be defined solely by her Asperger’s, and it is never going to be an excuse for us, either, and that will not change.  I’ll say it here and get it out early:  no matter what the new definition says about her, Kaitlyn is an aspie, and we are proud of that fact, just as we will be proud of her inclusion in the category of autistic under the new criteria.

I guess the biggest change may be the name of this blog, but that is not a given and is a long way off.

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