4:30pm June 22, 2014

"Asperger’s syndrome" dropped from the DSM-5

Is anyone bothered that the term/diagnosis of “Asperger’s syndrome” was dropped from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders? If you’ve traditionally told people you have “Asperger’s,” are you falling in line with the DSM-5 now and saying “I have autism spectrum disorder”? I know many may consider this an exercise in semantics, as no individual can be defined by a term anyway; but I’m wondering… does anyone feel passionately about this one way or another?

I don’t like the DSM-V’s definition of autism. Because I think some people are going to be left out. Some of them would have been diagnosed with autistic disorder, some with PDDNOS, and some with Asperger’s, but some people in all of the categories will no longer meet the new criteria. Which will be fine if they were already diagnosed with something (your previous diagnosis carries over no matter what changes later), but if they are not yet diagnosed, they will suddenly be undiagnosable, even though they’re definitely autistic. And that’s horrible, and will have negative consequences in terms of being able to access services.

However I have no problem with the elimination of Asperger’s and PDDNOS and putting it all under the label autism. I think that’s long overdue.

I see it this way:

There are at least, dozens of types of autism.

We have no current means of differentiating between any of them.

In the past, the labels Asperger’s and PDDNOS have been used to make it seem like people have a different condition from people diagnosed as autistic.

You could get three people who were identical in every way, and yet each one could get a different diagnosis.

You could get three people who could not be more different if you tried, and yet they could each get the same diagnosis.

I think it’s better to have one diagnosis – autism. And then to understand that within that diagnosis, there are at least dozens if not hundreds of ways to be autistic, and that we don’t have the knowledge or understanding to sort out which way is which.

And also to understand that autism is just a label based on guesswork piled on top of guesswork for generations of clinicians who have been guessing about what it means to be autistic and who should count as autistic. And that who gets called autistic depends both on whether we appear to be the way they think we are, and also on whether actually are the way they think we are, and that those two things have gotten blended together over the generations so that by now nobody knows what’s what.

So basically, I have no problem with them being lumped together like this. That’s progress. That’s admitting that the ways we’ve differentiated autism, AS, and PDDNOS have not been useful or worthwhile in telling who is similar to each other versus who is different.

What I have a problem with is the narrowing of the criteria so that people under all of the previous diagnoses… some people who could be previously diagnosed will now no longer be diagnosable, so if they don’t have a diagnosis already from the DSM-IV or ICD, then they’ll be out of luck when it comes to services. And that was done on purpose, and that makes me very angry.