The hotly contested removal of Asperger’s Disorder from the DSM-5 to be released this month begs to question: what does it mean? Since my son is an Aspie, I have not been immune to my own speculation. What I didn’t expect; the very validity of the entire DSM is now in question by much bigger fish than me.
What is the DSM and how did Asperger’s fit in?
The DSM is the DIagnostic and Statistical Manual produced by the American Psychiatric Association. To put things into perspective, the DSM is the standard for how mental disorders are diagnosed and treated. It is also used for insurance billing and FDA requirements for drug trials. It has been described as the “bible” for mental health.
In the DSM-IV, Asperger’s Disorder was a subcategory of ASD – Autism Spectrum Disorder. With the latest revision, the DSM-5 (they are also no longer using roman numerals in their revision nomenclature), they are getting rid of the subcategories, and referring to them simply as ASD. The idea is that they share a common set of behaviors, with different levels of severity.
So what’s all the fuss about?
I’m not necessarily emotionally attached to the name Asperger’s, it can be morphed into some pretty obnoxious stuff. Even then, Asperger’s does come with it’s own unique history from it’s namesake, Hans Asperger, and I liked his outlook. I can even hang with the logic that ASD is a common set of behaviors with different levels of severity, after all, it was already categorized under ASD, wasn’t that why? Admittedly, I am attached to the term “Aspie,” it is something I can relate to and identify with for my own son.
The levels of severity are what concern me. From what I can tell, an Aspie with ASD Light will be from here on out considered “Level 1.” Doesn’t every parent dream of their child being classified as a number? But I digress, that is really only an emotional response. I suppose what matters is that there is still a way to identify the drastically different needs from mild to severe on the spectrum. If I’m looking for information that directly pertains to my son, I need to know how to find it.
My other concern is the ‘not bad enough to be autistic’ syndrome sometimes amongst medical professionals. I experienced this with my own son. If it is not properly identified, you can end up with some very bad advice. In my son’s case, he would have been put on anti-psychotic medication for a condition he did not have. My concern is this: will doctors be able to universally recognize the common set of behaviors if they don’t consider them to be severe enough?
Looking at the requirements for Level 1 “requiring support,” I am satisfied that Noah fits into this category. I have seen how support in by way of speech, occupational, and behavioral therapy and other things have and continue to help him, in ways that I cannot. However, I wonder how difficult it will be to identify this when someone is seeking a diagnosis.
How relevant is the DSM?
As I mentioned before, the DSM seems to have significant street cred. Or does it? In a blog post on April 29th , the NIMH (National Institute of Mental Health) says effective immediately, they will be “reorienting its research away from DSM categories.” They say the weakness of the DSM is “lack of validity.”
That’s not all folks.They are initiating a project over the span of 10 years that will redefine the way a diagnosis is made. “We are committed to new and better treatments, but we believe this will only happen by developing a more precise diagnostic system.” Their intention is to move from a symptom based approach to a research based approach, and it is called RDoC – Research Domain Criteria.
So how much pull does the NIMH have? They are the worlds largest research funder. If you are looking for research funding it “…must not be constrained by the current DSM categories.” DSM, you’ve just been served.
I do like the approach the NIMH is taking. To me, diagnoses like these always seemed a bit subjective. It wasn’t until I read countless books and personal accounts about Aspies that I was really comfortable with my son’s diagnosis and problems started turning into solutions. In a way, learning about how to address it in this way became his “instruction manual.”
In the mean time, perhaps what we can take from this is that the DSM really doesn’t hold as much power as it may seem. Clearly we are not the only ones questioning it’s logic. The term HFA (High Functioning Autism) is widely used and it was never a specified as a subcategory in the DSM. ASD Level 1 doesn’t capture the community of like minded individuals that tie themselves together as Aspies. All said and done, my son will always be an Aspie to me.
