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.

Tuesday, June 30, 2009

Another Esoteric Post About DSM-V

Remember those proposed revisions to the DSM?

Hold the phone. Apparently, a shitstorm is brewing.

Dr. Allen Frances, who headed the DSM-IV task force, fired the opening salvo with this blistering criticism. He writes:

Undoubtedly, the most reckless suggestion for DSM‐V is that it include many new categories to capture the milder subthreshhold versions of the existing more severe official disorders. The beneficial intended purpose is to reduce the frequency of false negative missed cases thus improving early case finding and promoting preventive treatments. Unfortunately, however, the DSM‐V Task Force has failed to adequately consider the potentially disastrous unintended consequence that DSM‐V may flood the world with new false positives. The reported rates of DSM‐V mental disorders would skyrocket, especially since there are many more people at the boundary than those who present with the more severe and clearly "clinical" disorders. The result would be a wholesale imperial medicalization of normality that will trivialize mental disorder and lead to a deluge of unneeded medication treatments‐‐a bonanza for the pharmaceutical industry but at a huge cost to the new false positive "patients"caught in the excessively wide DSM‐V net. They will pay a high price in side effects, dollars, and stigma, not to mentions the unpredictable impact on insurability, disability, and forensics.

* * *

A third category of DSM‐V innovation would create a whole new series of so‐called "behavioral addictions" to shopping, sex, food, videogames, the Internet, and so on. Each of these proposals has received little research attention, and they all have the potential for dangerous unintended consequences, by inappropriately medicalizing behavioral problems, reducing individual responsibility, and complicating disability, insurance, and forensic evaluations. None of these suggestions are remotely ready for prime time as officially recognized mental disorders.

I do not have space to enumerate the dangers of all the other innovative suggestions for DSM‐V, but I will list just some of the riskiest that require the most careful review and caution: adult attention‐deficit/hyperactivity disorder (ADHD) and adult separation anxiety disorder; making it easier to diagnose bipolar disorder; pediatric bipolar, major depressive, and trauma disorders; autism spectrum disorders; new types of paraphilias and hypersexuality disorder; and the suggested rating list to evaluate suicidality. [Emphasis added.]

Nice, huh? Sensory processing disorder inspires skepticism, and its inclusion is predicated on copious research. But shopping addiction? That's pathological! Maybe we should dress our sons in Manalo Blahniks? Label that, doc!

You can read the American Psychiatric Association's rebuttal here. The rebuttal has been criticized for its uncivil tone, and lack of substance.

To learn more, read DSM V Badly Off Track.

Source: Michelle Dawson's Twitter account

Sunday, June 28, 2009

Not quite robust, but definitely not barren...

...is how I'd describe Brad's imagination. Here he is, in action:

Me, personally, I don't get a rote or scripted vibe, but admittedly, I'm biassed.

Tuesday, June 23, 2009

Me to Brad's SLP: He's Just Not That Into You

Or your dolls.

Allow me to explain.

I had Brad evaluated last week for private speech therapy. She raised the usual litany of concerns. Expressive language delay. Receptive language delay. No surprise there. What surprised me was her observation that his play is rigid and rote, and he has no imagination.

Oh really? I see him play with his brother all the time, and personally, I see mostly natural, unscripted play, with a lot of laughter. Brad has a sense of humor, albeit an immature one. Beyond that, I see a budding imagination, particularly when we use pretend food or stuffed animals.

The basis for the SLP's observation: it's the dolls.

The SLP did what every examiner does - she reverted to her preconceived notion of what inspires imagination in a normal kid. But Brad does not have an emotional connection to dolls or plastic representations of people. Why would he? In the world according to Brad, babies poop, cry, grab his stuff and don't share. He's around a baby - a sibling of one of Jeremy's friends - a few times per week. When he sees the baby, Brad goes right into bunker mode, protecting his booty of toys from the perceived threat because that's all that a baby is to Brad at this age.

So he lacks the emotional connection but he knows from past experience what to do with dolls. He puts them to sleep and says "shhhhh." He has memorized the play script. And being the pleaser he is, he happily goes through the script on request.

Fine, maybe I'm rationalizing. But the way I see it, he's acting in a rigid manner because we've reduced freeplay to an instructer-led service delivery model. Call me crazy but maybe play isn't always best when it's administered by a trained professional.

Not to worry though. I'm not shunning speech therapy. Brad is starting during the second week of July, two fifty minute sessions per week, covered by insurance at least for now. I plan to have a little heart to heart with the SLP before she starts however.

Friday, June 19, 2009

Quick Hit

Final research is under way to support inclusion of sensory processing disorder in the DSM-V. For DSM-V junkies, this falls under the Disorders of Childhood and Adolescence work committee (as opposed to the "neurodevelopmental workgroup" which is overseeing the autism revisions).

Wednesday, June 17, 2009

Comment Trolling on ParentDish, Part II

What are commenters saying about the recovery study?

Not much. It only drew five comments total, versus 145 for the ADHD post. The gem: an autism quack treatment I had never heard of before:
Just wanted to let the folks with Autism in thier families to know about our therapy. We have been testing with our Salt Boxes and getting very positive results. The children are sleeping through the night and moods are improved throughout the next day.To learn more about Salt Box Therapy please visit us @www.saltboxtherapy.com

Like a moth to the flame.

Comment Trolling on ParentDish, Part I

In a departure from the usual fare of pubmed expositions and autism books, this week I feasted on blog comments. And what a feast it was.

The topic: a recent study that links ADHD meds with an increased risk of sudden death, a significant and controversial finding. The forum: ParentDish. The relevance: kids who are A Little Bit Autistic often stuggle with attention when they enter school.

Here are the best chestnuts, which are far more compelling, colorful and diverse than any editorial I could put together:

Wish Belkin 6-16-2009 @ 8:20PM
This is insane. If there was one chance in a bazillion, I wouldn't let my kid within ten miles of this poison.

Sarah 6-16-2009 @ 10:47PM
Wish Belkin?Then you can not possibly know what it is like to have a child with ADHD. Without the medicine my son is on, he can not attend school, he can not have friends and he is not happy. I think this article should have listed which medicines increase the risk of death instead of saying the blanket term "AdHd meds."

rph94 6-17-2009 @ 12:33AM
As a pharmacist, I have probably seen only one or two true cases of adhd that would require medication - the million other cases seen are from teachers with over crowded classrooms or parents who don't want to deal with a child who is "busy". I myself have a boy who is exceptionally "busy" but with consistency and structure he has done just fine. He is a honor roll student. At school, I let his teachers know right off the bat that he has to stay busy. When he is finished with something - give him a project to do or another paper. I agree with those of you that have tried other measures - try cutting out all sugars and many times the child can be lactose intolerant. Try a coke cola in the am - it has the same stimulant effect as the meds. I am scared for the all of the children that are wrongly placed on these meds because of the side effects and long term effects.

michelle 6-17-2009 @ 1:49AM
Well then you must never have a child with ADHD!! Your child is miserable, and out of control ALL THE TIME!!! It's not fair to him OR to the rest of the family...concider yourself blessed...

Kelley 6-16-2009 @ 10:40PM
My 18 yr old son died in 2007 suddenly. He had been on adderrall for approx 3 years and the doc had increased the dose not long before he died. He had had cardiac tests prior to going on the drugs, but the doc really dropped the ball on follow up. I wish I would have known enough to insist on more consistent follow up, but I trusted our doc. Parents, Be very cautious of these drugs. I only wish I had. I don't want to see anyone else go thru what we have. Even if sudden death is 'very rare". I lost my only child and it was unnecessary.

Christine 6-16-2009 @ 10:59PM
How can it possibly be that 2.5 MILLION children are on these medications? Is this in place of parents and learning to behave? I CANNOT believe that 2.5 million American children are all defective unless they are just totally neglected, spoiled brats. I am sorry, I don't believe that most children should be medicated against their will.

chris 6-16-2009 @ 11:10PM
I was on ritalin for 7 yrs and became bipolar its not fair to the kid to experement with his brain,now Im taking Lamectle which is a wonder drug but Im an adult now and its my choice I turned down alot of drugs trying to combat bipolar,because they made me feel weirder,up or down or all around ,sweeden has outlawed ritalin,and I agree It burns up the synapisis in the brain ,sorry for me oh well,but I go off about this subject,the kids have it forced on them and nobody knows how they actualy feel like,it geeks them out,and the parents think because their being quiet its working, wrong very wrong

Karen 6-17-2009 @ 12:06AM
Parents who are dead set against Concerta/Ritalin/Aderol have never had a child with ADD/ADHD-Audio or Visual Processing Disorders. I was like the parents who were dead set against it....it was learning the facts, learning that taking red40 away, and any sugar prodects helped. My son was reading at the 1st grade level in 3rd grade....once he started Concerta, his reading level soared to a 6th grade reading level. Has it helped, without a doubt. But a parent MUST be proactive in their childs health care, and taking them to their doctor for check ups. To the parents who are prejuding us parents who are on this medication, don't....you have not walked in our shoes.

Not The Same Lisa 6-17-2009 @ 3:18AM
I am 31, I was "diagnosed" at 3 (1981) with ADHD. I can honestly say that 98% of children are misdiagnosed. I don't even know where to start. . . I was put on kiddiecrack, I mean ritalin, at 3 years old! I can only imagine the long term effects, I was on it until I was 13. It was a push by the school mostly, because they didn't know what to do with the genius that was failing everything but art and PE, and yes public schools get perks from the government the more kids they have with conditions like ADD on medication. Hence, idependant doctor's opionion always. There are many alternatives to treatment, medication should always be a last resort, because it leads to a long time drug use. Many ADD children go on to be medicated teenagers with manic depression, and other mental disorders. The ones that don't get on track grow into non-productive adults, still on medication or hooked on illegal
drugs. Seriously elvaluate your situation before you give out the medication, because they can't even tell you what the long term effects are of what they are giving your childen, to turn them into managable,zombies. ~ From Someone Who Knows

Wednesday, June 10, 2009

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.

Tuesday, June 9, 2009

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.

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


  • 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.

Thursday, June 4, 2009

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.