What’s in an autism diagnosis?: Changes in DSM-V ahead
November 20, 2008 by Kristina Chew, PhD
Filed under Health
So what is autism?
Chances are, if you’re reading this, you know, and are quite prepared to explain at the drop of the hat “what autism is.”
But what if you’re asked:
Why is there this separate term, “PDD-NOS”?
What is child disintegrative disorder and what does that have to do with autism, plain and simple? (as if there is such a “plain and simple autism”)
If a child has Fragile X, that means they don’t have autism……right….no….which?
Does “high-functioning autism” mean “Asperger’s Syndrome” only?
What’s the connection between autism and ADHD? Can you have both?
Can where you are and what culture a child is raised in influence diagnosis?
Is autism necessarily a life-long diagnosis?
These are just some of the questions and topics posed in a November report from the DSM-V Neurodevelopmental Disorders Work Group, written by Susan Swedo. The report is available via the website of the America Psychatric Association; more about the “future manual” of the DSM-V can be read here and go to Unstrange.com for an overview of how the diagnostic criteria for autism have changed through the years.
I gave a talk about autism to the Sociology Club at my college yesterday; one topic I discussed was how official definitions and our understanding of autism have changed over the years (however aware we are of this or not). I talked about theories of what causes autism; of the concept of an autism “spectrum”; about the need for including autistic individuals in schools and communities and not shutting them away in institutions; about my own experience taking care of my son and our search for the right school for him; about a family in China’s search for an education and therapy for their son as depicted in the film Children of the Stars and how is autism diagnosed in other countries?.
I only had a lunch period (not even 50 minutes; everyone had to run off so as not to be late for their 1pm class) and I felt as if I were putting out a lot of information, without really connecting it. In retrospect—especially as I reviewed the questions still being considered about autism spectrum disorders by the Neurodevelopmental Disorders (ND) workgroup—I started to think that maybe that’s just part of what happens when one tries to define and categorize “what” my son has and what he is; to find abstractions and generalizations for the specifics of one child I spend my days with.
The DSM revisions matter as they’ll have an impact on the services and therapies a child might “qualify” to have, based on what particular diagnosis a child is given. Even as we finesse the criteria and hone our understanding, and our categorization of “what” constitutes a diagnosis or not, will we lose the sense of some kind of common ground provided by the concept of an “autism spectrum”—or is this ground not so common as it might appear to be?
h/t to j/m
Good point about unconnected information. I got the sense from the report, though, that maybe they were attempting to go in a more connected direction (folding PDD-NOS and Aspergers more seamlessly into ASD, finding a way to incorporate the dual-diagnosis issue, etc.) To what extent is that accurate or even possible, I wonder?
And I also wonder to what extent we’ve got blind psychiatrists attempting to describe “their” parts of the elephant…
More musings over at Elvis Sightings. Thanks for taking this issue on!
This may make a big difference in insurance coverage as well. Possibly for the better or worse.
Ugh. And once again, they’ll produce a tome that is about a decade behind the science.
Let’s just hope Dennis Leary didn’t have any input.
Then it might be something like: “The DSM defines autism as a scam parents use in order to obtain services for their selfish children”.
I’ve always thought the DSM assumption that an autism diagnosis pre-empted an ADHD diagnosis was dubious–and all of the psychiatrists I know ignore it, as well. Unfortunately, it is difficult to get insurance to pay for treatment for ADHD once it has decided a child has “untreatable” autism which can’t co-exist with ADHD. (Fortunately, my son’s psychiatrist has overcome this hurdle with our insurance.)
Is all HFA asperger’s syndrome? No. At least not as asperger’s is currently defined, as involving no language delays. My son, who is 8, is at this point in his life indistinguishable from an 8 year old with asperger’s. But he can’t qualify for that diagnosis–he had speech delays (plus hyperlexia; he was reading at age 2). So HFA, definitely, but asperger’s, no.
And one final point before I get off my soapbox: The only mention of hyperlexia in the DSM IV is in the autism section, and makes a passing mention of it merely describing it as reading without comprehension. While hyperlexia can certainly involve reading without comprehension, it by no means always involves that. That reference is unfortunate, because that one sentence in the DSM is many service providers’ only knowledge of hyperlexia. I can’t even cound the number of times that various professionals have tried to tell me, “Your son can’t have hyperlexia–he’s too smart!”
When our kids were diagnosed (2 sons with Asperger’s 2 daughters with HFA) we were confused as to what the exact difference was. Hopefully the new DSM V will address that issue.
Eleanor – we’ve had the opposite problem. Our eldest son was an early talker and hyperlexic as well (and like your child, his comprehension has always been strong as well – I love the “too smart!” comment – if I only had a dollar for every time we’ve heard that over the years!).
Because he didn’t have “language delays” he didn’t qualify for HFA.
And yet this is now a young adult (over 18) who can’t really initiate or carry on a conversation that doesn’t revolve around video games. He struggles to articulate his thoughts on other topics. In other words, low expressive language. And because it’s a struggle for him, it impairs his desire and motivation to interact with others on a social level.
We often feel some guilt that our eldest was our learning process and while his younger sibs have benefited, we feel that he’s gotten the short end of the stick in many ways. He’s one of the reasons I’m a big advocate for early identification and intervention/treatment.
Whatever it eventually says, I wonder how it will change the prevalence and incidence data? ‘Hope there is accounting in the counting statistics for this phase change.
“Hope there is accounting in the counting statistics for this phase change.”
If there wasn’t any for the last change (DSM III to DSM IV). Why do you need one now? It still will not help with overall numbers.
Not controlling for a variable in the past does not mean you don’t account for it at any time…one of the reasons that there are problems defining what autism “is”.
Marking a phase change is pretty standard stuff, esp. if there is definitional change. If the numbers in a category change, will it be because there are more cases or because there is a modification of category criteria?
However, given the way your “question” was phrased, I expect that we will simply disagree.
“Marking a phase change is pretty standard stuff, esp. if there is definitional change. If the numbers in a category change, will it be because there are more cases or because there is a modification of category criteria?”
If they haven’t tracked that kind of information in the past, why would they start now?
The other logical question becomes how long will it take for DSM-V to be “globally” accepted by all practitioners? When is the starting point for the implementation of the count?