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.

Wednesday, May 27, 2009

Potent Potables for $400

Brad is going through an interesting stage in his language development: he's taken to phrasing his observations in the form of a question. Like jeopardy. On infinite loop. 24/7

Favorite questions: "what color is it?" "is it blue?" "is it tan?" and "how many are there?"

Don't get me wrong though: I'm loving it. It seems like a normal developmental stage, just a little delayed and exagerrated, which is an emerging pattern.

Tuesday, May 26, 2009

The Mislabeled Child: On Autism Spectrum Disorders (ASD)

This is second installment of my discussion of The Mislabeled Child. Here is a link to the first installment. This is a long one, so I've divided it into parts.

I Background

As I blogged, the authors write through a "neurolearning" lens. Of labeling, they write:
Labels matter becasue they can cause us to take an overly sterile, detached, and clinical view of a child's learning challenges and forget that these challenges occur in the context of a child's unique and complex life. They can make us overlook the important role that a child's unique temperament plays in dealing with learning challenges, and our need to help children develop character traits like optimism and resilience. [Emphasis added.]
The problem is: science is sterile and detached, by definition. And arguably, those very qualities are what provide a diagnosis with integrity and rid it of bias. Education and learning are, at best, social sciences and at worst, entirely unscientific. Autism, by contrast, is a biological condition - a life science, not a social science.

II Mislabeled

Applying the neurolearning lens, the authors conclude that autism is a commonly misapplied label. These mislabeled children, they argue, often have other conditions that are superficially similar to autism. They write:
...[c]hildren with these other conditions don't show the severe deficits in emotional empathy, "mirroring," and social affiliation (or sense of bonding with others) characteristic of autistic disorders.
They also report that children with autism present with different brain scans when compared to children with "other conditions." From a learning perspective, the group the authors label as autistic are generally impaired with respect to higher order thinking.

Noticeably absent from the differential diagnosis: engagement, the lack of which is commonly regarded as a defining quality of autism. They concede that these mislabeled children often have difficulty with social interactions and are superficially similar to autistic childen.

In essence, the authors are drawing a line where it doesn't otherwise exist from the perspective of empirical observation of behaviors (which they pejoratively describe as clinical and sterile). They don't expressly argue that practitioners are misapplying the DSM-IV diagnostic criteria. Rather it appears that they are arguing that, to get at the essence of autism, we need to go behind the behaviors. Pop open the metaphorical hood and poke around.

III The Good

What works best about the neurolearning paradigm is the prescription for treatment and particularly, how to teach or apply learning strategies to autistic children. This is a pet issue of mine, right? I started blogging in part because Brad's doctor was pushing ABA and I've faithfully blogged against ABA-pushing ever since. The Mislabeled Child articulates a great, easy-to-understand prescription for treatment for autistic children and nonautistic children alike. What follows is an outline of the relevant section on autism:
General Principles for Helping Children with Autistic Disorders
  • Reward and Motivation
  • Using Their Best Learning Strengths and Styles
  • Simplifying Information Input and Pattern Processing
Helping Children with Autistic Social Impairments
  • Helping Autistic Children to Develop Empathy
  • Helping Autistic Children Improve Their Social Interactions
Helping Children with Autistic Communication Impairments
  • Improving Verbal Comprehension
  • Improving Nonverbal Comprehension
  • Improving Verbal Expression
  • Improving Nonverbal Expression
Helping Autistic Children with Attention and Self-Regulation
  • Helping Autistic Children Improve Attention
  • Helping Autistic Children Improve Emotional Self-Regulation
Their roadmap for treatment is helpful, and I would encourage you to buy the book if you are interested in learning more.

The authors don't directly prescribe ABA as a treatment, but rather intimate that some of the underlying principles (reward and motivation) have merit. They write:
...[a]utistic children typically have a diminished desire to imitate others or to please and earn praise from others. In this way, they differ from most children, who quite naturally want to imitate and please parents and other adult authority figures - like teachers. Usually we take these desires to imitate and please others for granted in designing our educational and therapeutic systems. However, when a child has little intrinsic motivation to imitate or please, we must find a way to motivate her using things she finds extrinsically rewarding. [Emphasis added.]
The authors don't go on to draw the negative implication, so I will: if a child has the desire to imitate or please, it doesn't make sense to use an intensive program of therapy like ABA which is based on a system of extrinsic rewards. Common sense, right?

Not so much. As I blogged a few weeks ago, Deborah Fein et al published a study in which a group of children who present with "verbal and motor imitation" skills were said to recover from autism, and the study implies (but does not prove) that intensive ABA therapy caused this positive outcome. So there's a group of respected researchers who have taken common sense and turned it on its head: let's take the children who are imitating (without extrinsic rewards) and subject them to an intensive system of therapy (40 hours per week, recommended!) based on extrinsic rewards.

IV The Shortcoming

While I think the neurolearning paradigm is compelling, it does have a shortcoming: it's ahead of its time, for two reasons:
  1. The neurological indications (ie abnormal brain scan) are not dispositive as biological markers for autism at this juncture, from a scientific perspective. There are clusters of patterns of statistical significance, but not enough to define autism in whole, because autism itself is such a heterogenous condition. For example, from an etiological perspective, there may be five different autisms, three of which have observable neurological indications (ie abnormal brain scan) and two of which do not. In truth I don't know how many etiologically distinct "autisms" there are; no one does. Today. Maybe tomorrow, but not today. And even if we fast forward and hypothesize that biological markers will be discovered, who's to say that they will take on the form of neurological indications? Perhaps, one day the "litmus test" for autism will be a genetic test, not a brain scan.

  2. The correlary to autism as a mislabel is that these children often have an "other condition" that mimics autism. In other words, it's "you don't have this (autism), you have THAT." However, at least one of the THATs - sensory processing disorder - isn't recognized in the DSM-IV. This means there is no uniform way of diagnosing it. It also means that the label won't be respected or understood by the public school systems. In this blogger's opinion, a label is useless and perhaps harmful if it isn't uniformly applied or understood. Which, ironically, is the argument commonly used against the liberal application of the autism label. But the same argument can be made, more forcefully, with respect to SPD. (To be clear, I'm not arguing that SPD is a bad diagnosis or doesn't exist; I'm merely arguing that, today, it's poorly understood and not respected.)
More on sensory processing disorder and where I think Brad fits into it all in my next installment.

Thursday, May 21, 2009

Close but no cigar.

"You're eating like a big boy."

-Brad, describing me eating a sandwich without taking it apart.

ps I'm on vacation for a week...have a good week everyone!

Saturday, May 9, 2009

Recovery redux.

Recovery junkies know about the three studies from 2006 through 2007, and the 2008 study, each of which demonstrates that children who meet the diagnostic criteria for an autistic spectrum disorder can later "lose the diagnosis." Now comes yet another study (which is still ongoing) evidencing the recovery phenomenon (hat tip to Goodfountain). (If you get deja vu when you read the blurb, it's because the lead author, Deborah Fein, and the results were previewed in this clip.)

At issue are three critical questions:
  • Can a child who meets the diagnostic criteria for ASD at a young age cease to meet the diagnostic criteria at an older age? (The "If".)
  • What are the traits of the children who have the potential for "recovery"? (The "Who.")
  • To what is recovery attributable? (The "How.")

Let's see what us amateurs can glean from the published extracts.

If - Given that there are five studies validating the phenomenom, I believe the If question is answered in the affirmative. This blogger doesn't doubt that the phenomenom is real.

Who - As for the Who, this study concludes:
Children who failed to meet diagnostic criteria for ASD at follow-up were more likely to: 1) be 30 months or younger at initial evaluation; 2) have milder symptoms of autism, particularly in the social domain; and 3) have higher cognitive scores at age 2.
In other words, these children were on the mild to moderate end of the spectrum to begin with.

How - Now onto the loaded question - the "How." The How is why the MSNBC clip sent me into a tizzy. The How can likely be attributed to either services or maturation. As I have blogged, I think it's maturation, and this study validates my belief:
No differences between children with stable and unstable diagnoses were found for amount of intervention services received.
I'm not asserting that services don't help. On the contrary, I believe that services are essential for certain children. Rather, I'm suggesting that full blown "recovery" is a biological destiny that cannot be induced with services, a conclusion supported by the above excerpt.

Now let's loop back to the 2008 study and the most recent study (which is ongoing). Note that Deborah Fein, featured in the MSNBC clip, is involved in both studies. Since the most recent study is ongoing and not yet published, I will attempt to deconstruct the 2008 study, which appears to be substantially similar.

In this blogger's opinion and based only on the abstract, the 2008 study is a bit obtuse and has an editorial bias. The abstract states:
Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity.
Let's focus verbal or motor imitation, commonly referred to as "mirroring." The absence of mirroring is said to be one of the hallmarks of autism. The 2008 study shows that the presence of mirroring in a child is a predictor of losing the diagnosis. But then it goes on to say that "overall symptom severity" is not a predictor of losing the diagnosis. Really? By implication, the study is asserting that a child can have mirroring skills yet still be "severe" from a symptom severity perspective. I'm not an expert, but that doesn't make sense to me. If a child has mirroring skills, relatively high intelligence and receptive language, then that child is at most moderately impaired, relatively speaking, and to suggest otherwise seems obtuse to me.

Next the study goes on to state:
Controlled studies that report the most recovery came about after the use of behavioral techniques....Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal.
The clear implication: ABA ("applied behavior analysis") brings about recovery. I feel a tizzy coming on again. Blood pressure rising. Here is the big flaw: the study doesn't compare the ABA group to a group that didn't receive ABA. Now, you might say, well you are just reading the abstract, which is true. However, Kev from Left Brain/Right Brain reports that he reviewed the entire 28 page study, made the same observation and went so far as to email the study's authors. The authors replied to Kev on an unrelated point but did not address the issue of controlling for services. (See second to last comment from Kev.)

The new, ongoing study reports:
Most of the formerly autistic kids got long-term behavior treatment soon after diagnosis, in some cases for 30 or 40 hours weekly.
What we don't know is whether they are following children who were not receiving ABA.

With respect to the 2008 study and the ongoing study, I suspect an editorial bias in favor of services. Which I understand because I'm sure ABA does a lot of good for a lot of children. But editorial bias is not science. Unless they're comparing the beneficial effects of the ABA to a controlled sample (like the Lovaas study did), then it's all smoke and mirrors.

Wednesday, May 6, 2009

Switching it up.

Well, Brad's insurance appeal was denied. We will press forward with a second level administrative appeal, but in the interim, we're pulling the plug on services. We're going to try to apply some of the the therapy, particularly the gross motor exercises, ourselves. The fine motor activities will probably be hit or miss.

And since we're losing OT, I've put the wheels in motion on private speech.

I asked the OT for some parting words of wisdom, and she told me something that makes this mama proud. Something I've heard from many therapists before her. She complimented Brad on his great temperament. "He always smiles, and follows directions," she said. Too true. He's a great little guy.

Tuesday, May 5, 2009

Next up for the one person book club...

...The Mislabeled Child, as promised. It's 510 pages long, so I'm going to break this up over a number of weeks. This week, I'll be skimming the surface starting with:

The cover. Check this out. The kid is smiling! Compare and contrast to the disturbed child on the cover of Out of Sync Child. The tone of the book is similarly upbeat, imploring the reader to focus not just on impairment but also on positive attributes.

Of the books I've read, The Mislabeled Child is the best explication of what I call the A Little Bit Autistic-sphere because it describes the relevant disorders and their component parts comparatively, and it does so in a parent-friendly manner. So while many books separately explore autism, sensory processing disorder and language disorders, this book pulls it all together and then some (ADHD), compares and contrasts the disorders to each other, and peppers in the neurology for credibility and good measure. Also, it explores what I refer to as the lesser-includeds: visual processing impairment, central auditory processing disorder, working memory impairment and dysgraphia.

Next, a note about the authors, Brock Eide, M.D., M.A., and Fernette Eide, M.D. Brock Eide's medical specialty, in the formal educational sense, appears to be internal medicine, while Fernette Eide is a neurologist. Together, they run the Eide Neurolearning Clinic, specializing in neurologically based approaches to learning. They host this blog.

And here they are, on tv, plugging their book:

Nice people.

Last, a note about the title, "The Mislabeled Child." See, the book is not about unlabeling, or losing the label. Labels are useful, the Eides argue. Rather, it's about re-labeling in the broadest sense. They cite as an example of mislabeling a dyslexic child whom the educational system "labeled" lazy, careless and slow.

The "neurolearning" lens is pervasive throughout the book and shapes how the Eides define autism, and the other conditions they explore. In an earlier post, I explored the fundamental question: what is autism? Under the Eide/neurolearning paradigm, autism appears to be defined in large part by its neurological indications and the child's learning strengths and weaknesses. Behaviors are taken into account, but are not dispositive in and of themselves. In a recent blog post, they write:

Historically, autism was first recognized as an entity by a psychiatrist, but as it becomes even more clear that the behavioral label subsumes many different neurological conditions, it's time for business-as-usual to come to an end.


In the coming weeks, I'll explore the chapters on sensory processing disorder, autism and ADHD.