About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Monday, February 20, 2012

Proposed Revisions to the Diagnostic Criteria for Autism Spectrum Disorder

As you may have heard, the American Psychiatric Association has proposed sweeping changes to the diagnostic criteria for autism spectrum disorders (ASD). As a result of these changes, it is estimated that 45-80% of those previously diagnosed with an ASD will no longer qualify for that diagnosis. I understand that there may be a new substitute diagnosis referred to as "social communication disorder", which may be applied to those who no longer qualify as having an ASD.

There are so many Big Issues that I don't feel qualified to weigh in on here. Will this lead to a more or less just allocation of resources? What about the issue of identity? After all, "asperger's" is more than just a label; there are huge swaths of people who identify as "asperger's." You can switch up a diagnostic manual, but you can't just take away a sense of identity from people. Will those with asperger's coalesce around the new label ("social communication disorder")? How will these changes affect my son? These are fascinating questions. I don't have answers.

I'm writing in reaction to a post I read by another blogger, and I'm just writing to put my anecdotal experience out there. Writes another blogger whom I admire and respect (emphasis added by me):
I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets. If it's true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed. If so, where is the outcry over waste? There isn't any, because it's universally accepted among recipients that the services ARE needed.
With all due respect, I wouldn't say that this is universally accepted. May I direct you to Exhibits A, B and C. Not every child benefits from intensive ABA. The agency we used at one point told us Bradley doesn't need the services they were providing. They set up goals for him, recorded his progress in a binder and it soon became obvious he wasn't enough developmentally impaired to benefit from the program. He maxed out very quickly, meaning he met all the goals they established. In hindsight, this was a colossal waste of resources when you consider the cost of ABA and the children in other communities who are much needier and who don't have access.

You may counter that my family is in the minority because I am in Massachusetts where services are abundant. True, but autism advocates lobby national companies to add an autism benefit. If a national autism benefit were added, families like mine represent potential claims experience - a substantial liability with respect to which the benefit of coverage is uncertain. The new definition of autism represents a way to manage that liability and tie it more closely to a population that is more likely to benefit from the services. Managing that liability may, in turn, result in increased coverage. For this reason, my at-first-blush reaction is that the revised definition will be beneficial.


Kris said...

This is such a hard issue!! Alex is definitely in that "does he or doesn't he?" crowd. Just for background, we had 3 major evals done. One dx ASD, the other two dx "severe ADHD with a sensory component." Is this really the same thing??????? That is the question!!! (I personally think the answer is yes.)

He easily met the educational definition for autism for his IEP. However, he gets minimal IEP services. Basically, just some accommodations for his slow processing like extra time on tests, less homework, etc. NO OT, speech, aide, or pull-out services. We are lucky he is followed by a great special ed teacher in the regular classroom.

In short, he has deficits to be sure. Does he or did he ever need ABA or other intensive services? We were told from the beginning "No." He did have speech and OT which we paid for out of pocket because VA has no mandatory coverage for autism/developmental disorders(or at least it didn't at the time.)

I do think you need to break down the symptoms experienced and provide therapy where there are clear deficits regardless of the diagnosis. This is what we tried to do despite the fact that no insurance coverage was provided (except a small part of OT.) I think there should be mandatory coverages when moderate/severe deficits are present regardless of dx. I had to learn to stop being so hung up on his dx, because I realized we were never going to get a definitive one.

Becca said...

Hm, this is a tough one.

Our son is on the lower end of functioning, with a severe to profound intellectual disability. He was in a private school for two years, eight hours a day of VBA, which our insurance paid for. He liked it there and he had fun. But did it make any difference in his development? I'm not sure it did. But other kids in the same school had modest to great gains. He is very, very difficult to engage and so far no one (not us, and not his school team ) has found any consistently surefire ways to connect with him. But we keep trying.

You state that the new DSM definition might "represent a way to manage that liability and tie it more closely to a population that is more likely to benefit from the services." But what population is that? You imply that it would be kids like mine, i.e. "lower" on the spectrum. My take is that it is so dependent on the individual kid, and that the functioning level may not be the right measuring stick. Some kids who see great improvements through services seem to have some kind of heightened receptivity to being engaged, taught, lead, etc. -- some kind of "sweet spot" that makes connections possible, regardless of where they are on the spectrum.

So if the proposed changes are made, it may prevent a whole lot of kids from getting those services who may benefit greatly from them. And hey, if they're like you're son and they "max" out or test out, that's great. You say "the benefit of coverage is uncertain" in cases like yours. But I'd say that's the case for each and every kid. What else can we do but try?

Anthony Frost said...

That is a very interesting article, and well documented.

cerebral palsy & birth injuries