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. 
Posts that hopefully are similar:
- Sensory Processing Disorder and the DSM-V – Call to Action
- Sensory Processing Disorder and the DSM-V – Call to Action (Urgent Update!)
- Five Things You Can Do If You Think Your Child Has Autism
- The Clinical Definitions of Autism, Asperger’s, and PDD-NOS
- President Obama and Autism
- What’s Your Autistic Toddler Like Now? (Part 1)
- What’s Your Autistic Toddler Like Now? (Part 2)
{ 4 comments… read them below or add one }
Very interesting post … I’ll look forward to diving into all the links in more depth as time (and sick kids) allow.
One interesting point, from my perspective of a toddler diagnosed within the last four months, is that her neurologist already diagnosed her as “on the spectrum” as opposed to having one specific label. [Admittedly, the paperwork does state PDD-NOS, which is what qualified us for Early Intervention.] His partner is big into the politics of Autism and they are already choosing to diagnose only as “on the spectrum” as oppose to one subset of the ASDs. Especially the kids that are caught early, as it will evolve as they mature. That leads me to believe that the overall trend will be towards a general spectrum diagnosis instead of a specific label.
Perhaps most important will be to put funding behind services for kids on the spectrum. When EI and school districts can have the appropriate financial resources to give these kids the interventions they need, then hopefully parents won’t have to be fighting quite as hard. I have to believe that it is in the best interest of all educational entities – EI and school districts being the obvious two – to give these kids as much support as they need to be successful. And the only reason that I can think of for them NOT to do that is lack of funds.
And why are psychiatrists working on this when autism is a NEUROLOGICAL disorder???
@Amy – The doctor who evaluated the J-Man stated up front that he didn’t diagnose types or ‘severity’ of autism at this age. He just did ‘autism’ or ‘not-autism’. I think that’s the way to go at this age, and will take it that based on this doctor’s reputation and bazillion years of clinical experience that my sense of this is well-founded.
A big, obvious question is how to address these as children get older. I don’t feel remotely smart enough to answer that. Perhaps when we read their draft in a couple of months we’ll be able to better see the implications of their proposal in our everyday lives.
Before I forget, the DSM working groups cover all sorts of disciplines and specialities, and neurological disorders are well represented by their respective experts. You can see the list of members of the Neurodevelopmental Disorders Work Group responsible for this effort. Several of the names don’t ring a bell to me – which doesn’t mean a thing about their qualifications – but a few I’ve heard of. Dr. Volkmar wrote this enormous, comprehensive book – A Practical Guide to Autism – which is about the size of a good phone book. I bought it a couple of weeks ago, and it might take a year to digest even half of it. I recommend going to that page and reviewing their credentials. I did today for the first time and found it very informative. I left feeling quite impressed with that group.
Early Intervention – at least in our experience – seems to have a relatively low threshold to entry into the program, especially when compared to the school systems. Admittedly, the J-Man had so many qualifying issues that it may have seemed like an easy threshold to us.
As the age of autism diagnosis steadily gets younger, this is perhaps going to create some interesting issues with EI. I think EI eligibility starts at 18 months of age pretty much everywhere in the U.S. That was about 2 1/2 years ago for us, and just that recently, ages of autism diagnosis seemed to be rarely younger than 2.5 years old, at least according to the evaluators we worked with. However, it’s been pretty steadily heading toward that 18-months-old range in some cases since then. I’ve been wondering whether an autism evaluation will come as part of determining EI eligibility rather than doing it well into EI like we did.
Anyway, there’s the added level of complication with the schools in that eligibility for school services is defined under IDEA, which may or may not jibe with what’s in the DSM. Autism is a recognized disability under IDEA. In some nebulous part within the zone of PDD-NOS seems to be the current boundary between eligibility and not. I really feel for parents in many school districts trying to navigate IEPs with a PDD-NOS diagnosis. In some places, it’s no big deal; in others, it’s like clawing for every inch. I agree that ‘PDD-NOS’ turning into ‘autism’ could really solve a lot of those problems.
I just found out that IDEA is up for renewal in Congress next year. That makes me breathe hard just thinking about it. The two big issues will be whether the funding is going to be there and whether the definitions of disabilities and the educational requirements will remain at least as strong as they are now. Funding is going to be a war until the economy improves. That hurts my brain to ponder right now. I’ll deal with that tomorrow.
@Tim – Interesting … our experience has been totally opposite. I guess it depends where you live. Here, EI has a high threshold for entry, whereas the schools are falling over themselves to help. (One of the things I *love* about our school system.) We self-referred to EI three separate times, but despite having several issues going on – language delay/apraxia, sensory issues, gross motor delays, social/adaptive deficiencies – no one of them was 50% delayed (language was 47% at its worst because they considered word approximations to be acceptable even though they sound nothing like the word itself) and therefore we didn’t qualify. On the other hand, the school district has already mentioned a special ed preschool with ST, OT, PT, and ABA and they won’t even start their evals until January/February.
As an interesting aside, I got a call yesterday from the director of a study (who had evaluated her at 24 months) wanting to see our daughter’s developmental screenings from 6 and 12 months as part of an effort to identify early signs of autism. I hope as time goes on, we can identify these kids earlier and earlier. Again, here EI eligibility starts at birth … can you imagine what progress could be made if a child was identified at 6 months of age and therapies started at that point?
The list of members in the Neurodevelopmental Disorders Work Group is indeed impressive. What struck me most was that we both live autism day-to-day, but their lives couldn’t be more different than mine! Yet both essential!