Thursday, February 11, 2010

Autism: The New Draft Definition

There's a new proposed autism definition in town.

Here is the brand new draft/proposed definition of autism, as proposed for the upcoming Diagnostic and Statistical Manual, Version 5 (DSM-V), currently slated for publication in May 2013. The DSM in its most current version carries the official criteria for autism, the standards by which autism is to be diagnosed.

Proposed DSM-V criteria for Autism Spectrum Disorder (299.00)

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

   a. Marked deficits in nonverbal and verbal communication used for social interaction:

   b. Lack of social reciprocity;

   c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

   a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

   b. Excessive adherence to routines and ritualized patterns of behavior

   c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

This is a substantial change from the previous definition, in a number of ways. At a very basic level, it's a lot shorter! The previous/current definition, which I have often referred to as a "combination platter" diagnosis, began like this:

"A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):"

I'm not going to quote the whole DSM-IV definition here, because it's pretty long. Roy Richard Grinker, author of Unstrange Minds (and originator of the term Elvis Sightings as related to autism, woo hoo!) has an excellent page on his web site listing all of the past DSM criteria. If you scroll to the bottom, you'll see the one from the DSM-IV, which will continue to be the official diagnostic criteria until the DSM-V actually comes out.

Another major change in the new draft is that it no longer recognizes separate categories for Asperger's and for PDD-NOS. I think this is the aspect of the change that will generate the most discussion, due to possible implications for identity (how people think of themselves) and services (in situations where currently a diagnosis of "autism" will get you services but a diagnosis of PDD-NOS won't.) Grinker has an op-ed in Tuesday's New York Times speaking to the identity question, and arguing on behalf of the greater clinical accuracy of folding the formerly-separate categories into the one spectrum.

Another new thing is that the DSM-IV definition specifies onset before age 3; the new draft specifies more generally that "symptoms must be present in early childhood."

One more aspect that leaps out at me, and I haven't seen discussed yet: I've always found it fascinating that sensory issues are so much a part of Joy's life, and so present in the way I hear both parents and people on the spectrum themselves talk about autism. But sensory issues were not so much as mentioned in the DSM-IV definition, and I've written before of Agency 1, the local intensive-services provider where we were told that they didn't "believe" in sensory integration.

Looky there, folks... it's right there in the new draft, item 2 part a!

I'm looking forward to hearing how the new draft will be dissected, analyzed, possibly changed? There will surely be a whole raft of consequences, both intended and unintended. One way or another, though, the DSM-V is coming and bringing a new framework for autism with it.


Pie Maker said...

Indeed. I remain very interested to see how this all plays out....

Anonymous said...

An informative and helpful post, JM. Thank you.

"Marked deficits in nonverbal and verbal communication used for social interaction"

Like it or not, intelligence is measured through written and verbal communication (aka IQ tests). Did you read the post I linked into our Stim Sense post - from Autism in New Brunswick -? The blogger gave opinion to the DSM V and the lack of mention of intellectual disability in the definition of autism.

In "Hypothetically Speaking" you did not speak to curing intellectual disability - often another co-morbidity with epilepsy and autism.

More of my philosophical thoughts... BRatK

JoyMama said...

Good point about intellectual disability, BRatK! It actually didn't occur to me to speak to it. Wonder if that's because my "cure" lens for intellectual disability has been powerfully shaded by the book Flowers for Algernon. (Speaking of dystopian fantasies.)