Get Adobe Flash player

Posts Tagged ‘2013 DSM changes’

Losing Asperger Syndrome in the DSM-5

As many are aware, the new DSM-5 came out in May 2013 and it includes controversial changes involving the diagnosis of Asperger Syndrome. Basically, Asperger Syndrome is no longer recognized. It has been lumped in with autism.

What is the big deal about this?

Well, for one, it has been a long, hard road educating the public at large, medical professionals, and educational professionals about Aspergers. Many still do not recognize it when they see it or have blatant misconceptions about what Aspergers is. Awareness is certainly better than it was 10 years ago but we are far from the mark in that regard. People are slow to see the gifts of Aspergers and many hear “Aspergers” and think “autism.”

One of my biggest frustrations as a counselor is having a delightful Aspie before me and the parents either do not believe it or have such a negative association with autism that they reject the diagnosis out of hand. Some of the common misconceptions I hear are “My child can’t have Aspergers. She cares about others” or “He has friends” or “He looks me in the eye” or “She’s doing great in school.” All of these represent a very narrow interpretation of what Aspergers looks like and the variety with which it can express itself.

With the proposed changes, that same kid with Aspergers will now be called autistic. If people balk at the diagnosis of Aspergers, how well do you think a diagnosis of autism will be received? Personally, I was never very comfortable with the placement of Aspergers on the autism spectrum, and now here we are. Not only has Aspergers been sitting next to autism at the dinner table all these years, it is now about to be eaten up by it.

The importance of clear language and distinctions

There are many similar conditions in the DSM that have varying degrees of severity. Take depression for example. There is Depressive Disorder which can be classified as mild, moderate or severe. And there is dysthymia, which is basically depression, just less severe but more chronic. Why not take out dysthymia and lump it in with depression? The reason is there is advantage to having distinctions. It helps us differentiate. Distinctions help us communicate more precisely and intelligently. Same thing with Bipolar Disorder with all of the accompanying qualifiers and descriptors. There is cyclothymia, which I was taught to think of as “bipolar light” in graduate school. In cyclothymia there are highs and lows as with bipolar but they are much less severe. While we are making everything so simple, why not throw away that diagnosis as well?

I recently attended a 3 day conference on autism and Aspergers. One of the speakers said that the reason Aspergers is being taken out is because there has been too much discrepancy in diagnosis among professionals. While one would call a set of symptoms High Functioning Autism, another would call it Aspergers and yet another would not acknowledge it at all. So it’s just easier to not have these distinctions since professionals can’t agree on them anyway. I have a different idea: How about the professionals get more training in how to diagnose? There will always be some discrepancy in judgment where human beings are concerned and that comes with the territory in the social sciences. Although some disorders have specific tests that give you a quantitative score, many do not. Many diagnoses remain subjective. That doesn’t mean we should stop talking about them because we may not agree all the time.

Blue is a color…

and thanks to our intelligence we can see and talk about many different shades of blue. There is sky blue, navy blue, turquoise, blue-violet, and many others…just look at your child’s box of Crayolas for more variations. Or look at some paint chip samples. If autism is blue (and blue has been adopted as the honorary color for autism awareness), then Aspergers is purple. Please don’t take away our ability to see, appreciate and talk about purple!

My prediction:

I predict there will be such an outcry about these proposed changes that the Powers That Be will take a second look at the plan and hopefully change it. If it goes forward as currently proposed I predict a world where kids who would have been diagnosed with Aspergers will be diagnosed with autism and may suffer a drop in self-esteem, a loss of hope and a loss of a feeling of community. I am not saying that people with autism have no hope or community—they do and they have every reason to hope. What I am saying is I have seen how upsetting a diagnosis of Aspergers is to some people, despite how positively it is presented. Telling people they have autism, that they are autistic, is likely to be received as devastating news, not to mention misleading news.

Others will not be diagnosed with anything and will wonder why they don’t fit in, why they feel sad and how they keep getting into so much trouble at home and school or why they can’t keep a job or a partner. They will have no answers–just a feeling they are incompetent and flawed. They will have no community of kindred souls to turn to for support because people will not be talking about their gifts and challenges in a common language anymore.

If autism truly is a “spectrum disorder,” what sense does it make to take out the nuances, the wonderful shades and colors, making it black and white? The answer is it doesn’t make any sense. We should be going forward not backward.

I, for one, will join hundreds of thousands who will be DSM 5 rebels regarding this diagnosis. I will continue to talk about, read about and teach about Aspergers and all-things-Aspie. This reminds me of the time when Coke changed the formula and introduced “new Coke” or more recently when JC Penney’s got a new CEO who decided to do away with sales and coupons and just have “common sense pricing.” We all know how those ended up—back to the original.

Darlene Kirtley, MS LPC © 2012