SPD Versus PDD: The Battle of the Vague and Nondescriptive Labels

This chapter of The Mislabeled Child left me wondering: which label is better for a child like Brad - severe SPD or mild PDD? Brad is so borderline that either label probably fits. Answer: they both suck! No, really, they do. But which sucks more? Consider the following:

Heterogeneity: PDD-NOS can describe anything under the sun, from the severe to the mild end of the autistic spectrum. SPD, likewise, can describe a child whose symptoms mostly present as emotional dysregulation with no cognitive difficulties to children like Brad who are autistic-like (or what have you). Winner: tie, they both suck.

Respect by schools: here, the edge goes to PDD-NOS. The schools don't respect SPD as a diagnosis because it's not formally recognized in the DSM-IV. Winner: PDD!

Ill-conceived notions for treatment: As I learned firsthand, the prescription for treatment for PDD is ABA, and not just ABA, but intensive 25-hour per week ABA. SPD has some weakness in this area too: people have the preconceived notion that SPD kids don't like tags, bright lights and loud noises. (As I blogged, Brad doesn't have an issue with any of these things; on the contrary, he needs more than average stimulation to reach an ordinary state of arousal.) That having been said, I'll take dim lights for Brad (which he doesn't need) over ABA, thankyouverymuch. Winner: SPD!

Diagnostics: PDD-NOS is widely diagnosed by a whole host of professionals, including developmental pediatricians, psychologists and neurologists. SPD? I don't even know. The Eides diagnose it. Occupational therapists diagnose it. Who else? Anyone? Winner: PDD!

Overall: I give the edge to PDD over SPD. What say you, readers?

The Mislabeled Child: On Sensory Processing Disorder

The Mislabeled Child indicates that sensory processing disorder ("SPD") is one of the conditions that leads to an autism mislabel. But! Is it a distinction without a difference? They write:

In fact, there is some relationship between sensory processing disorder and autism. Many children with autistic spectrum disorders also have sensory processing disorder, and some experts actually consider sensory processing disorder to be part of the autistic spectrum.

Hmmmm, very interesting. Here's the good part:

Both children with autistic spectrum disorders and those with sensory processing disorder show difficulties with high-level tasks involving the integration of different brain areas. These include complex sensory (e.g. vision, hearing, position, alance, motion and touch) and motor functions and also emotional regulation. Typically, though, the deficits seen in children with sensory processing disorder are "patchier" than those seen in children with autism, with greater sparing of higher order functions in areas like language, social affiliation, and empathy.

So, let's recap. According to The Mislabeled Child, SPD is superficially similar to autism with respect to behaviors, it may or may not actually be on the spectrum and, behind the behaviors, it's pretty much the same, only "patchier" and sparing of higher order functions.

Now, if I apply the Mislabeled Child paradigm to Brad, he probably falls under SPD. I think he has "affiliative drive", and he definitely has good mirroring skills, which would indicate he's not autistic, as per The Mislabled Child. Moreover, Brad has what the book describes as the physical manifestations of SPD. Of diagnosing SPD, the authors write:

Among the most common findings we see on exam are difficulties with finger-position sense, finger confusion, gross- and fine-motor coordination, low skeletal tone (especially of the core or postural muscles in the trunk and neck), difficulties with visual motor control and visual processing, and difficulties with auditory processing.

Brad has each of these physical issues. And that's not just my subjective opinion; these difficulties were observed by his developmental pediatrician (the second one, not the first one we kicked to the curb) and the school district. To clarify, these are also signs of DCD or dyspraxia, which itself is a symptom of SPD.

Sensory Processing Disorder: Ho-hum Revisited

Here, I will attempt to construct Brad's sensory profile:

"Ho-hum"/Sensory Disregarder (more on the profile here):

• Brad appears to react less intensely to sensations than a typical child. For example, a month ago, Brad and Jeremy were playing with a balloon which, predicably, popped. Jeremy (typical, age 5) shrieked and then cried. Brad was completely unfazed.
  
• I can't say he's impervious to pain, but he doesn't cry a lot.
  
• We've been taking Brad to restaurants for as long as I can remember and he has never once melted down or appeared upset or overwhelmed by the noise.
  
• He has the issues with muscle tone, postural stability, binocularity and bilateral coordination that characterize dyspraxia and underresponsivity.

Vestibular dysfunction: going back as early as 24 months, I observed his habit of turning our play balls into exercise balls. He puts them under his bum and bounces for vestibular stimulation.

Procieptive dysfunction: He loves swimming, and I think that has something to do with proceiptive input; he flaps (mostly when he's excited or aroused); and he has a habit of flopping on his favorite ball. (Yes, he has a favorite; it's orange; he gets pissy if anyone other than him so much as looks at it.) I think the flopping on the ball has to do with procieptive input (versus when he's bouncing on it, which is vestibular or motion).

Tactile: he touches his face a lot, mostly near his nose and his mouth. His school OT said it may be because there are a lot of nerve endings there.

Auditory: he doesn't respond to name consistently; sometimes seems aloof.

Visual: atypical eye contact.

Taste/smell: nothing that I've observed.

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:

• "Autistic like"
  
  
• "Quirky"
  


• A Little Bit Autistic :-)
  

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.

Update: Recovery

Just a quick update to this post on recovery. I'm not the only one calling bullshit on this one.

Michelle Dawson, who attended the conference at which Deborah Fein presented, similarly notes the disconnect between the media reports and the actual study [via The Autism Crisis]:

...But in her presentation, as in her abstract, Dr Fein did not associate the findings she reported with any kind or quantity of autism intervention or treatment. When
speaking at IMFAR, she expressed doubt that this in fact could be done.

Dr Fein clearly added more information when speaking with the media. She expressed her view that recovery from autism, what Dr Fein calls "optimal outcome," was associated with early intensive ABA-based autism interventions. Like all researchers, she is free to say what she wishes to the media. However, her statements relating kinds and amounts of intervention to outcomes in autistic children are not supported by any of the data she chose to present at IMFAR 2009, either in her oral presentation or in a series of related posters.

Indeed her study design does not permit any conclusions about effectiveness of interventions, no matter how "effectiveness" is defined. She has not conducted a true experimental design in which well-known sources of bias can to some degree be accounted for and therefore the effects of interventions, their benefits and harms, can usefully be assessed.

Taking creative liberties with the media. What the heck right? There's no harm to bandying about the term "recovery" and linking it to a therapy when that link is unsupported. It's not like parents are looking for hope or anything, are they?

People are starting to realize that the emporer has no clothes. Even mommyblog "ParentDish" expressed skepticism. Ditto for a popular professional association newsource I read. Deborah Fein does a disservice to her patients/subjects and the cause of promoting ABA mandates. You don't gain credibility with hyperbolic claims based on fantasy.