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.

Friday, June 5, 2009

ASD Labeling: The Next Generation

Let's inventory some of the labels that may be ascribed to a child who is A Little Bit Autistic. There are the medical terms:
  • Asperger's

  • PDD-NOS

  • Dyspraxia

  • Developmental Coordination Disorder

  • Sensory Processing Disorder

  • Mixed Expressive/Receptive Language Disorder

  • Communication Disorder
And the informal terms:
And now there is. Wait for it....

"Subclinical AS Symptoms"

Where to start.

In March, I blogged about the February 2008 summit in conjunction with the DSM-V "Neurodevelopmental Workgroup." Now, the April 2009 report has been published, and it is quite provocative, in this bloggers opinion. Unless I'm missing something, notably absent are "asperger's" and "PDD-NOS."

With respect to PDD-NOS, I say "good riddance", but asperger's? The reasoning appears to be that the asperger's/HFA differential diagnosis has little integrity. Anecdotally, spectrum bloggers often identify as "spectrum" or "autism" rather than "asperger's" or "HFA" for this very reason.

In the place of autism, asperger's and PDD-NOS are:
  • Most Severe ASD

  • Moderately Severe ASD

  • Less Severe ASD
Not to leave any stone unturned, the proposed DSM-V revision provides for two off-the-spectrum designations: "Subclinical AS Symptoms" and "Normal Variation." There it is.

Click here to learn more.

I think Brad is currently on that line between "Less Severe ASD" and "Subclinical AS Symptoms."

"Subclinical AS Symptoms." Learn it. Love it.

[Via Change.org]

Update here.

16 comments:

goodfountain said...

Subclinical. I think that describes Charlotte.

The Asperger's label in my mind doesn't fit her.

I watched a video on the "Autistic-Like" movie yesterday (found in on the Floortime website) and was going to email you about it. Guess you've already heard of it.

I want to see this movie!

indigo doll said...

thankyou yet again for doing all the hard reading for me.

our paediatrician has a PhD student who is studying what he calls "crossover kids"- those in possession of an asperger's diagnosis with a side of, say, DCD or SPD.

i'm wondering if that is going to get past the viva.

Kris said...

Wow, thanks for posting about this. My son Alec (I think) fits the Subclinical definition, which is probably why it has been so hard to get him a diagnosis that fits. He is dx with SPD, ADHD, and language disorder. I was hoping SPD would make it into DSM, but it looks like it won't?

I have also seen the trailer for "Autistic Like" and from what I saw, it describes Alec perfectly. I may have to order it.
Thanks for your update.

~AspieMom~ said...

Thanks for posting this, Laura.

A little boy just 2 years old said...

I looked up the def. of subclinical & it doesn't really seem to be a good fit.

"not detectable or producing effects that are not detectable by the usual clinical tests"

Otherwise, is that IT? I mean, that just doesn't seem to do it for me. I know that there might be a lot of symptomatic stuff in the current version, but that seems to matter to some degree. And what about the sensory system. And what about 2 out of 3 of these and 1 out of each other category. There doesn't seem to be a place to rest where it's ok not to have ALL the criteria, b/c there is so LITTLE criteria....

I worry about the 'severity' classification. Will it be used to deny services?

I don't know. I guess we'll see where this ends up.

Shari said...

Well, my son doesn't fit any of those. Unless they average the two columns. Under "Fixated Interests and Repetitive Behaviors" I think he falls under the normal variation, but for "Social Communication" he is moderately severe ASD. He doesn't talk yet, but he is making gains in gestures, eye contact, and joint attention. He still doesn't respond to his name the first time.

It's good to see that all the diagnoses are going to be considered "spectrum". It was always hard to explain why some are called Aspergers while others are PDD-NOS, and others are just called autistic.

Of course when this is finalized then places like our regional center that pays for services are going to have to revise their criteria. Aspergers and PDD-NOS don't receive services, but autistic does.

Saja said...

I really like the idea of converging everything into one disorder on a spectrum, but these descriptions are so incredibly subjective. *I* can't even figure out where to place myself. How do I know if my fixations and repetitive behaviors are "some interference" or "frequent and interfering"? Some days are worse than others. And even if I decide what that means to me, another person may draw the line in the sand in an entirely different place.

And how will a psychologist even begin to determine this? By asking the autistic person or her parents, I assume. How's that for subjective?

I also agree with A Little Boy Just Two Years Old--where's the sensory sensitivity, which is a hallmark of ASD?

To be fair, this is an initial draft to indicate what *may* be adopted, not a final clinical definition. I think it's a good step, but there will need to be much greater clarity and objectivity in the final diagnostic criteria.

A little boy just 2 years old said...

This description bumps my little man up to 'Moderate' where I always would have described him 'Mild'. Seems to be too much room.

However, I do like that everything is 'ASD' in a way. Unless they make a cutoff for services.

Like others have said - it can vary day to day, week to week, and between categories.

rhemashope said...

Ditto Indigo Doll - thanks for doing all the reading and giving us the skinny. All of these labels are making my head spin.

RollerCoaster said...

My child was Dx with PDD-NOS just before he turned 5 this past January. Thank you for posting this as I am still learning about what this is and how it affects us. I am on the ABA path and we are just about to start a home program.

I think my son falls somewhere in between the Less Severe ASD and Subclinical AS Symptoms.

I just hope these new classifications aren't a way to deny services which I am still fighting for.

kristenspina said...

I'm not sure I understand. So if your child already has a PDD-NOS diagnosis, what happens?

Jody said...

Just to clarify: the documentary is called "Autistic-Like" because that was the fuzzy, initial diagnosis given by experts, not the diagnosis "favored by this family". Graham's Story is about how his father questioned the diagnosis and eventually learned that while his son has sensory processing and motor planning issues, he does not have autism. In the film Dr. Stanley Greenspan and other experts confirm this distinction. Thanks for reminding parents...it's not always autism.
J. Becker, Producer, Autistic-Like

Laura said...

Goodfountain: I found it months ago trolling youtube for "sensory processing disorder". (Yes, I'm that bad!) And to be honest, I'm stilling trying to wrap my brain around what asperger's is, and no, I wouldn't have suspected that dx for Charlotte. Nor Brad. The school may have its own design though.

Indigo Doll - ha! "crossover kids" - another label. *hands indigo doll honorary label junkie plaque"

Kris, I was thinking the same thing about the prospects of SPD in DSM-V. Pure speculation: I think this Subclinical AS Symptoms may be the death knell for the official SPD dx.

ALBJ2YO - keep in mind, a child would still have to meet minimum severity threshold to be on the spectrum. E hasn't had ADOS or CARS yet, has he? Brad just barely met the ADOS cutoff. I suspect E would be borderline-ish as well. Which is why he might fall off the spectrum and into "AS Symptom" land. And if he didn't, he would probably be closer to less severe based on ADOS.

Shari, Rollercoaster, kristinspina - I couldn't even hazard a guess as to impact on services, since I just barely understand my own local maze of services based on the existing dx matrix. kristin - to your broader question, I suspect it would be swapped out for a sub-dx based on symptom severity. But isn't getting rid of "asperger's" a bigger problem? Think of the asperger's associations, and the adults who identify as asperger's. PDD-NOS isn't as ingrained into the fabric, in my opinion.

Saja, yeah, they are definitely painting in broad strokes at this stage. Work in progress, I suppose.

rhemashope, AspieMom, you're welcome!

Jody - Thanks. I updated the post. Graham's story is more than a little familiar to me, as is Greenspan's work. "Dr. Stanley Greenspan and other experts confirm this distinction." A distinction with or without a difference, and if it's a difference is the nature of the difference qualitative or quantitative? This will be the theme of a post I am working on. Stay tuned, if you care to weigh in.

Nyx said...

I gotta say, this just looks like more of the same to me. There's no there there. "A single spectrum better reflects the pathology and symptoms." Do they actually KNOW the pathology? "Separation of ASD from typical development is reliable and valid." Is that true? "Individuals with autism, PDD-NOS or Asperger disorder often are diagnosed by severity, rather than unique, separate criteria defining the three diagnoses." Does this not reflect a highly circular process in which the diagnostic criteria are driven by what the diagnosticians are actually doing, rather than the other way around? This is groupthink, not science. BTW, I read in a medical textbook the other day that DCD combined with ADHD used to be a very common diagnosis which has since been replaced with ASD. They even included incidence numbers. It makes me wonder what sort of information is out there about what used to be considered a unique population of children ... information which has now been obscured by throwing them in with everyone else. What do you think will happen to studies now that the diagnostic categories are broader? And how will anyone ever compare new studies to old ones? Having obliterated the categories, I can resign myself to continuing to have no friggin idea whether any of the children included in any study I read actually have anything in common with my child, and I can continue to look forward to listening to experts airily "educating" me all about "these children."

Laura said...

Nyx, reading medical textbooks? *bows* Thanks for the FYI re DCD and ADHD. I too find the criteria worthy of mocking, hence the snarky tone, but I don't share your sense of exasperation. I'm pretty sure that longitudinal studies are frozen in time with respect to dx criteria.

Jann, LOL I love how you have to keep telling me how NOT autistic your autistic acting child is. Methinks thou dost...ahem, anyhoo, nice to see you've dispensed with the pretense that your subjective experience is anything but universally true fact. Science is for nerds!

Jann said...

Interesting, Laura, how Nyx and I are saying the same thing, but her you laud, and me, you mock.

It's true I have to fight to keep my child from being mislabeled. That's my job as his parent...to make sure he gets the correct help and support that will help him reach his potential.

He won't get that with an ASD label.

Parents such as yourself who willingly embrace labels even if they are wrong make it tougher for parents like me -- it's becoming clear that people don't even know what true autism is anymore.

To suggest that people are "growing out of autism" is truly change the definition of it being a lifelong neurological disorder.

And it does little to help people like my friend and her relatives, who aren't "growing out of" anything.