It’s that time again when they update us on the progress of how the clinical definitions of autism may be redefined in the next version of the Diagnostic and Statistical Manual of Mental Disorders, or DSM. (Read more about this in our The Clinical Definitions of Autism, Asperger’s, and PDD-NOS post from a while back.)
The Neurodevelopmental Disorders working group for the DSM-V (V = 5th Edition) has an interesting list of issues related to ASDs that they are trying to reach conclusions on before the 2012 target date. (Note this is an older version of the list, but it’s still a fascinating read.) To say that whatever is ultimately approved for inclusion in this manual will affect the lives of both parents of autistic children and autistic persons is a serious understatement.
There has already been a lot of commentary and some controversy about this process. It does seem, however, that the working group assigned to revise the DSM for autism have tried to be methodical. careful, and sensitive to all the issues involved. Honestly, I think they were given an almost impossible task here. We won’t really know how well they succeeded until we see the first draft.
This NY Times article describes the latest controversial issue in this process as well as some ongoing ones. This most recent one has already drawn a ton of reaction and might easily be among the most talked about when the draft is released.
The big question being discussed now is whether Asperger’s as a specific, separate diagnosis will be left out of the next DSM. ‘PDD-NOS’ may also be going away. Without the draft actually existing yet, it’s hard to really dig into the real-world meaning of this, but for whatever these are worth, here are my comments about this and some other points.
* I am really conflicted about the possibility of ‘Asperger’s’ being taken out of the official medical vocabulary. ‘Aspie’ is such an essential identity for so many people. They wear it with pride, as well they should. If Asperger’s is taken out of the next DSM, what happens then? I think it is imperative that we work to ensure that voices within the Aspie community are valued and listened to by those in the working group who will ultimately make the decision about what goes in the DSM. I don’t think ‘Aspie’ is necessarily going anywhere as part of our vocabulary, but I am deeply interested to hear more from those who would be directly affected by all this.
From a parent’s perspective, the Asperger’s vs. autism conversation often goes in directions that I find troubling. Some parents with autistic children can get into that mindset with parents of Asperger’s children like “what do they have to worry about?” or “their kid isn’t that (or isn’t really) autistic” or “at least their kid can talk.” I’m not judging this as the frustrations they arise from come out of a lot of difficult and complex emotions within us, but I strongly believe that these are perspectives we should be working to overcome. In many ways, I think having one big tent under ‘Autism’ might help lessen some of these divisions.
I want to see the draft and hear from others before I think about this much more. The quotes from Temple Grandin and Ari Ne’eman toward the end of that NY Times article are brief but illustrative of what will be a growing number of perspectives about all this.
* Medically speaking, resisting labels beyond ‘Autism’ feels like the way to go. The DSM is only revised approximately every 15 years. Our understanding of autism seems to change by the day. By not having categories with too rigid of a description, they can (theoretically) allow for the DSM to accommodate improvements in our understanding of autism, diagnostics, therapies, etc. However, if the definitions are too fluid, then their usefulness as ways to provide specific diagnoses decreases. It’s a tough balance to reach. I’m honestly not even sure how possible this is.
* They still have to find some way to classify whatever they put in the DSM. They can’t just call them Autism A, B, C, D, and so on, though the J-Man might really love that they have letters. I’m a big believer that what names we give to things is very important. To this point, I haven’t really seen anything from the working group that talks about how they plan to address this.
* The possible outcome of having ‘autism’ or ‘not-autism’ being the diagnoses could really clear a lot of things up and make getting services for people on the borderline much easier. But within ‘autism’, there needs to be enough specificity that autistic children and adults can get the help appropriate to them in the form they need it.
* I truly believe that PDD-NOS going away would be a great thing, with one big if. If PDD-NOS (as a friend of mine called it, “hell if we know, enjoy your label”) is incorporated into the descriptions of Autism in the DSM in such a way that children currently with this diagnosis are brought more fully into the autism spectrum, then I think this is great news. If those children end up falling through the cracks, then we can’t let that happen.
* It’s still very unclear how they will actually classify what are separate diagnoses now. In addition to the diagnoses that have medical definition now like Asperger’s, PDD, etc., there are many terms we use – like high-functioning autism (HFA), low-functioning, etc. – that don’t have any medical definition. They simply exist as a way of describing your child relative to other children on the spectrum. Without specific criteria, these relative descriptions are useful for conversations to provide a frame of reference – particularly with professional service providers, educators, and other parents – but medically and especially for insurance purposes, they have no clinical meaning.
Not only does the working group have to figure out how to incorporate Asperger’s, PDD, etc. under the heading of Autism – apparently without using those terms – they also have to figure out how to describe the ‘severity’ of a diagnosed person’s autism. Is there a way with some measurable accuracy to pinpoint what a child’s overall ‘functional level’ is? Is that term even appropriate? I think much better definitions of the continuum of autism are needed, but danged if I know how to even start to do that.
* I’m very interested to see whether sensory issues are somehow incorporated into the new definitions. My feeling from reading previous reports is that if they are, it likely won’t be in any real specific detail, but I’ll wait until the draft comes out to see. I have read before that sensory integration/sensory processing disorder is highly unlikely to be included as a specific diagnosis, unfortunately.
* The repercussions of this on how readily children can receive appropriate services from schools here in the U.S. are vast. I still believe that this process will lead to clearer boundaries such that schools will be much less able to deny services, but it’s too early in this process to be sure about that. A whole lot of parents of PDD-NOS children who are fighting school districts for every inch of services they get are waiting on the edges of their seats on this point. While they are the most in limbo in this process, I do think the end result will make life easier on those of you in this situation. But we must all work to make sure that’s what really happens in the end.
* The briefest question – does this all seem a lot more important right now than it will be in reality?
* And a personal curiosity of mine, will the autism spectrum actually expand as a result of all this? There was some discussion at one point about whether at least certain conditions involving ADD/ADHD (not all people with ADD/ADHD, but some subset of them) might get folded in under Autism. I don’t know where that stands now. I keep thinking personally that I may be only a short walk away from the spectrum myself. Some of the criteria for autism and what they mean certainly help me make sense of several aspects of myself that no other diagnosis previously has. More on that in a future post perhaps.
At this point, it looks like the public comment period for these changes will begin in January. In all likelihood, this comment period will go on for some time, be followed by a period where they go off and review all the comments and make changes accordingly, and then go into another comment period. They are already expecting a deluge of comments, and I’m sure everyone involved will be more than willing to provide them!
So it will be essential for all of us to contribute to this process when the public comment period begins. I’m sure hundreds of autism bloggers – including us – will keep you posted.
OK. That went on way longer than I anticipated, but what else is new. 🙂