Potent Potables for $800

As Brad continues to phrase his observations in the form of a question, I am reminded of the original Jeopardy satire which gave us brilliant categories such as:

• Colors That End In "-urple"
• Months That Begin with "Feb-"
• The Number After 2
• Point to Your Nose

A Little Bit Autistic presents...Celebrity Jeopardy, featuring the awesome Will Ferrell as Alex Trebec [via Funny or Die]:

SNL Celebrity Jeopardy 10-23-99 - watch more funny videos

(Click here if the embed isn't working.)

Ferrell's comic genius is undeniable, but is it...special? As in, a special talent associated with an autistic spectrum condition. I have it on good authority that Ferrell had some familiar spectral traits as a child:

Born and raised in the Los Angeles, California, suburb of Irvine, in 1968, Ferrell was an easygoing child. "He was born like that," his mother, Kay, told Scott Raab in Esquire. "You know those little Matchbox cars? Will would line up his Matchbox cars, by himself, and be totally happy. You'd say, 'You wanna go to Disneyland today or line up your cars?' and he'd have to think about it." Ferrell was known as a funny kid even in elementary school, where he would punch himself in the head just to make girls laugh.

Makes me wonder. I know what a quirky kid looks like as a kid, but what does one look like as a grown up?

Of course, some would say spectral sitings are misguided, and that our energy would be better spent examining the relationship between autistic spectrum conditions and talent, and the nature of talent itself, rather than inferring autism where we see talent.

Chew on that. Or watch Funny or Die. Either one.

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

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.

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.

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).

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

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]

Updated June 6, 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.

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.

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.

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!

A Little Bit Autistic presents...

...couch surfing*



*Patent pending.

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.

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.

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.

Google Critic Wants You Aspies to Appreciate His Pretty Little Designs

Apparently, Google is some sort of hotbed of aspergian thought. Who knew? Google is an employer that values engineering prowess, and doesn't penalize its employees for weak social skill. That's a good thing, right?

Wrong, according to this esoteric rant:

Google was founded by extreme-male-brain nerds and, by all outward appearances, seems to hire only that type of person, not all of them male. Apart from Bowman, I can think of only two Google employees I could stand to be around for longer than an elevator ride.

See, the blogger is unhappy that Google drove its marquee designer, Bowman, to quit. He continues:

My impression of “Googlers,” which I concede is based on little direct knowledge and is prejudicial on its face, is one of undersocialized, uncultured, pampered, arrogant faux-savants who have cultivated an arrested adolescence that the Google working environment further nurtures. Their computer-programming skills, the sole skills valued by the company, camouflage the flaws of their neuroanatomy. Their brains are beautifully suited to the genteel eugenics program that is the Google hiring process but are broken for real-world use.

Ouch.

Isn't this analogous to attending Spelman College and complaining about the emphasis on African studies? I mean, really, it's Google, a company built on a search algorythm.

And for these engineers whom the blogger stereotypically dubs aspergian, Google and companies like Google likely represent an oasis in a desert of prejudice. A place where they are valued because of who they are, not in spite of it. A place where failure to comply with the rules of social order doesn't hold them back.

Here, the coin is flipped. Whereas, in the majority of society, the neurotypical blogger is in the majority, with aspergians in the minority, at Google (and companies like Google), it's the reverse. And the blogger complains: aspergians have no taste and can't entertain him longer than an elevator ride. Well, boo f ing hoo! Isn't that unfair. Welcome to high school for the average aspergian. Newsflash: life isn't fair.

So the good news is that society is moving in the right direction. There are geographic pockets and industry sectors in which aspies can thrive. Aspergians are shining, and society is valuing their contributions.

The bad news is that it appears that an ugly backlash is under way, as evidenced by the rant.

[Via Gawker]

Updated April 29, 2009

Prospective

Looking forward, in the next month I'm going to blog about various chapters of the book, The Mislabeled Child. It's a good read for parents of A Little Bit Autistic types. Just a "heads up" if you want to follow along.

Retrospective

He may still toddle in the literal sense, but he's not a toddler anymore. Bradley is growing up fast! A quick post to memorialize some of his recent transitions:

• Potty - I'm happy to report that Brad's potty strike was short-lived. To recap, we did what most parents do in the beginning - we prompted him a lot. So that he wouldn't forget. Well I think all the prompting made him anxious, which resulted in the potty strike. To remedy the situation, we did two things: (i) we chilled out, and (ii) we started him on double fiber sandwich bread, just two slices at lunch time. I don't know if it was the fiber or something else, but he got the hang of it, and today, he's solid. No accidents.
  
• Big boy bed - we finally transitioned him out of the crib. We opted for a real bed (with safety rails), rather than a toddler bed since he's a tall 3+ year old. He mounts it on his own with a little stool, but he doesn't dismount on his own. So he still waits for me to get him in the morning and at nap. But the good news is that he really likes the bed, and he didn't have any difficulty with the transition.
  

And last, my confession:

• Paci - yes, until recently, Brad was using a paci at nap and overnight. The pacis NEVER left the crib (so they're not a speech delay culprit) - they were only used as a sleep aid. We did the same with Jeremy and I credit the little sleep I was able to get when they were infants to the pacis. Anyway, I was very nervous about this one, but we ditched the pacis when we transitioned him out of the crib and...drumroll...success! It was unremarkable. I think the novelty of the new bed distracted him from the loss.

More Autism Awareness on MSNBC

If you're insatiable, here's a sensory integration-themed clip:

Visit msnbc.com for Breaking News, World News, and News about the Economy

Nothing new here for SPD junkies, other than the latest advances in consumerism.

"Recovery" reaches the masses.

Visit msnbc.com for Breaking News, World News, and News about the Economy

This video segment features Karen Exkorn, author of The Autism Sourcebook, and her son Jake. I read the Autism Sourcebook early on and, as I blogged, I did not find it compelling. Bluntly, I don't personally believe that "recovery" can be sourced to ABA, so I found her story misleading. Rather, I believe that the natural process of maturation, combined with a rich environment (which ABA can provide), causes certain children to cease to meet the diagnostic criteria. (But keep in mind, I'm a blogger, not an expert.) And on a personal note, I bristled at her recommendation that a 2 year old be subject to 40 hour per week of treatment.

To be clear: I'm not discounting the benefits of ABA, where the results are short of recovery. ABA is probably the best therapy for many classically autistic children, and I don't doubt for a moment that ABA is the best bet for a positive outcome for many.

Incidentally, Jake was initially diagnosed with PDD-NOS, not classic autism.

Autism Awareness Month

I figured I'd buck the trend and post on awareness mid-month. Just in case you all forgot: April is Autism Awareness Month.

But awareness is a double-edged sword, isn't it? After all, a little knowledge can be dangerous. (Cue the video of Jenny McCarthy on Larry King during Autism Awareness Month 2008.) People by and large are familiar with the face of autism in its severe form and the ubiquitous prevalence data. And so - and perhaps I'm being pessimistic - the popular conception of autism is: scary and prevalent, and maybe related to vaccines. Superficial awareness - I'm not a fan.

And that's why I'm blogging to support not the promotion of superficial awareness but rather the promotion of a real, multi-dimensional understanding. For me, as a parent, I've come to understand autism through the stories of real life parents and of autistic persons alike. The nature of the disorder - the good and the bad - comes to life and takes shape through these stories.

And on that note, I'm recommending Autism the Musical, a video that served to promote my understanding back in April of 2008, when I was three months into my journey. It represents a pretty good cross section of the autistic spectrum, from classically autistic to PDD-NOS to asperger's. One of the cast members, Lexi, stole my heart, and to this day, the memory of her beautiful voice warms my heart. This blogger's advice: buy the video and steer clear of CNN. My two cents.

Recalibrated Expectations

It's human nature to have hopes and dreams for your child. I love Brad unconditionally, but I can't turn off that part of my brain that hits the fast forward button and imagines the future.

And like so many parents, Brad's diagnosis initally shattered those dreams. Then I learned about autism, recalibrated my expectations and came up a with a new vision for Brad's future. He would be different, in a good way.

The rosy outlook culminated when Brad was evaluated by his school. His teacher made an observation in his written report: "superior attention and eye contact during the 50 minute evaluation." When we met in person, he went on to tell us that Brad isn't what he expects for the PDD diagnosis.

Superior, I thought. Not "good", not "sufficient", but "superior". There it was, in black and white. He's going to be okay in school. He might not even need special education for long. My expectations crept up.

Flashforward to Wednesday of this week. I met with the school district to check in and see how Brad's doing now. The verdict: not well. There's a massive delta between his one on one performance (i.e., when he was evaluated) and his performance in a group setting.

Bam! Serves me right for having high expectations and getting ahead of myself.

He's withdrawn. Socially, he's an island, off on his own. Cognitively, he's having difficulty following instructions. He goes for the playdoh by himself when the other kids are monkeying around with each other. He doesn't attend, which is his shining strength in a one on one setting. Bottom line: he's barely keeping up. And keep in mind, this is a special ed class. His peers are, for the most part, not socially advanced.

I've blogged before that Brad doesn't melt down. And from this I've concluded that he doesn't overstimulate. I think I'm wrong on that point. I suspect that he does overstimulate, only instead of melting down or expressing upset, he withdraws and blocks the world out.

I pressed for one on one "pull outs" for OT to fill the soon-to-be void, assuming we have to stop private OT. As I predicted, the school shut me down. Something about the law requiring services "in the least restrictive environment." They're going to add Brad to the OT's informal rounds. This means she'll visit him in the classroom and facilitate in a group setting. Not what I wished for but it is something.

The physical therapist will do something similar, visiting Brad when he's on the playground with the group to facilitate his physical play. He'll also get ad hoc one on one as needed during regular class to help him keep up. His IEP is being revised to reflect these new accomodations.

So, once again, I am recalibrating expectations, hopefully to something realistic this time. As for Brad, I'm grateful that he has a great educational team that really understands and appreciates him. Onward, with realistic expectations and a realistic IEP.

Quotable

"Q: What's the difference between an extroverted actuary and an introverted actuary?

A: The extroverted actuary is going to look at your shoes and their shoes when they're talking to you."

January 19, 2009, Tonya Manning, Chief Actuary of Aon, poking fun at the members of her profession

A Little Bit Autistic Against the Machine

The insurance machine, that is. After covering occupational therapy for about 10 months, our insurance carrier has denied future services because our insurance covers OT for rehabilitative, short-term purposes only. OT for developmental maladies is regarded as habilitative - gaining new skills - rather than rehabilitative or regaining old skills. So I've lodged an appeal, complete with six enumerated exhibits. (I'm completely serious.) One such exhibit is cutie photos of Brad ostensibly to demonstrate that he had no signs of hypotonia as an infant (whereas he does have hypotonia now, and therefore OT would be rehabilitative). But the real purpose of the pics is to make an emotional appeal. Claims reviewers do have emotions, don't they???

Also, we've put the wheels in motion to try to get one on one OT through the school system. Right now he gets OT in a group setting, which is great but one on one, and the monitoring that goes with that would be better. The road block with the school system is different, but equally impenetrable - I need to make the case that his DCD or whatever impairs his ability to functionally access the classroom. Bottom line: the children who get one on one OT are bumping into stuff or toe walking, and Brad doesn't do either of those things. So this is probably a long shot.

We'll hear back on both fronts in the next month...

Quotable

"The geeks shall inherit the earth."

Steve Wozniak, always ahead of his time.
March 30, 2009 on Dancing with the Stars

"Aversives"

Since autism has touched my life, I've had a keen interest the subject matter, including autism in the news. (Can you tell?) And so, living in Massachusetts, I'm aware that a local special needs school is on the worst offender list for its use of "aversive therapies", including electric shock therapy. Outraged that this was happening so close to home, I've taken to quiet advocacy, emailing my local representatives to crack down on the abuse.

A moving essay just published in Salon.com provocatively entitled "The Monster Inside My Son" reminds me that there are two sides to every story. Read this essay at your own peril.

Not that DSM-IV doesn't have me sufficiently confused....

...check out DSM-V. Well it doesn't exist yet. But here is a preview of issues that the authors will consider when revising DSM-IV. One that caught my eye is "Is Autism a Life-Long Diagnosis?" - a theme I have not only explored on this blog, but lived. Vicariously. Also interesting: the discussion of asperger's versus high functioning autism ("HFA"). What differentiates the two according to DSM-IV criteria is the presence of significant speech delay. But there is some debate as to whether the two conditions are etiologically distinct:

Asperger’s Disorder – is it Autism? In her introduction, Francesca G. Happé, Ph.D., (London, UK) raised some of the key questions that have arisen regarding the diagnosis of Asperger’s Disorder, which was introduced into DSM-IV in 1994. These questions include: is there an ‘Asperger’ subgroup of autism with distinct cause, course, cognitive profile, and intervention needs, and if so, what is its relation to other ASDs?...Asperger’s disorder has...had an impact on family studies of autism with regard to what we recognize as “caseness.” Dr. Happe noted that the current criteria do not work: they do not allow for developmental change, the early language criteria do not demarcate groups with different prognoses, it is hard to apply the diagnosis for adult cases, and there is no clear conceptual basis for the diagnosis. Dr. Happe concluded that although there is a recognizable Asperger’s type and that some cases of classic autism grow into this picture, she wonders whether there may be a better classification schema. Sally Ozonoff, Ph.D., (Sacramento, CA), in her presentation, compared high functioning autism (HFA) with Asperger’s, and noted that there were few differences in their definitional DSM-IV criteria; both require two social symptoms and one repetitive/stereotyped symptom, both are in the average range intellectually and have current fluent language. The main criterion distinguishing the two disorders is the requirement in Asperger’s that onset of language occurs at the expected time, e.g., single words by age 2. Dr. Ozonoff noted that it is difficult to evaluate the literature since definitions vary across studies and that many children who are thought clinically to have Asperger’s actually meet criteria for autism (which supercedes a diagnosis of Asperger's). There is some evidence to suggest that Asperger's and HFA do not represent distinct disorders: they co-occur in the same families and do not “breed true” (i.e., family members of patients with Asperger's have HFA and family members of patients with HFA have Asperger's); children with autism who develop language have similar outcome to Asperger's; HFA and Asperger's are indistinguishable by school-age; and although studies find better language skills and/or verbal IQ in Asperger's, multiple studies have found no group differences in other neuropsychological domains.

Basically, we're in the abyss. I mean, I used to think, oh that CAN'T be a possibility for Brad. Silly me, looking for bright lines. I'll never learn! I have since downgraded "CAN'T" to "maybe not", bordering on "possibly some day in the distant future."

I figured this is worth a mention since a number of my bloggy friends are exploring asperger's.

TGIF

Meet Brad's some time babysitter, which I referred to here.



His name is "VTECH."

Quirking Out

As I blogged, Brad started to "stim" as he approached his third birthday. That trajectory has continued. Lots of spinning and flapping, and lately he puts his finger on his nose when he talks - probably not a stim but quirky nonetheless. In any event, I regard stimming as a trait, not a symptom. I'm taking notice of it for the sake of taking notice of it, not to complain.

Also, he's memorized a lot of math. See, his grandmother gave him a kiddie laptop for Chanukah. Both of the boys received the same gift (although Jeremy's is slightly more advanced), but Brad has become attached to his while Jeremy's is collecting dust. No exagerration, he's memorized how to add or subtract any two numbers under 20. He can identify numbers up to 200. And it doesn't end when he puts down the laptop; he likes to recite it.

Anyway, a certain lightbulb has gone on. In the early days, I noted that some autism moms were defensive about their children - prompted by those looks from strangers. I didn't understand this last year, but I get that now. I've even received a few remarks from friends that have rubbed me the wrong way. Since I'm not anonymous, I won't elaborate. But suffice it to say, that lightbulb has gone on for me now.

Alas, a question for my sage readers: is there a tactful way to tell some one to STFU???

"A Little Bit Autistic"

Just a quick note to reflect on recent events. After going through denial and acceptance and all of the turmoil that came with that, and after having Brad evaluated and diagnosed with PDD not once but two times, the latest doctor opinion casts doubt on the PDD dx. In the immediate aftermath, I felt angry. Now, my feelings are somewhat indifferent.

When it comes to mixed messages, it looks like Brad may be in good company. In comments, Three Channels and Goodfountain report similar mixed messages, i.e. between doctor 1 and doctor 2, or between doctors and the schools. And Stimey blogs about early skepticism on behalf of one doctor before getting a dx for Jack. So, in some respects, I'm just following a path that so many before me have paved, online and offline. A path that I'm certain will have many twists and turns.

My long time blog readers may recall that when I started blogging, I called my blog "PDD-SOS." It was really more of a personal vent than it was a blog, but no matter. I retired that name when acceptance starting setting in. If there's any doubt in anyone's mind: this time, the name is staying. Wherever the journey leads from a diagnostics perspective, my sense is that we will be A Little Bit Autistic for quite some time to come.

Mind/Body Connection

There's a school of thought that what Brad has is, and should be treated as, primarily a language disorder. I haven't blogged much, if at all, about speech therapy and communication issues. The reason: I regard Brad's speech delay as a symptom of something else. Of course I've blogged about that "other thing," whatever it is, ad nauseum.

But some one could probably present a similar case for the motor symptoms. That is, one might similarly argue that the motor impairments and hypotonia are just a symptom of something else, so why focus on those discrete symptoms?

Two thoughts on this:

1) I don't regard DCD as an isolated motor deficit. While the DSM-IV description of DCD points in that direction, in common parlance the alternate term "dyspraxia" is understood to engender a whole host of traits from speech delay to social impairment to disorganization of thought. And as I blogged, DCD is a set which overlaps with autistic spectrum disorders.

2) I've observed many therapy sessions, including speech, occupational therapy, developmental therapy and floortime. Hands down, without question, the most effective sessions by far have been the occupational therapy sessions. The occupational therapist, not the speech therapist, gets the most spontaneous speech from him. While I don't have proof of its effectiveness in a clinical sense, this mama believes that occupational therapy implicates some kind of mind/body connection.

Because the occupational therapy (OT) visits were so successful, the developmental therapist(DT) did a co-visit so that she could observe the OT's technique, and carry it over in her own sessions. And lo and behold it made all of the difference. For example, at first the developmental therapist would sit on the floor with Brad and play with him, and try to get him out of rigid routines, and to use imagination, etc. It just didn't work. I mean they played, but Brad mostly phoned it in, and veered into his comfort zone, i.e. blocks. After the co-visit, she started interjecting movement breaks into the play. It was simple: she put the wooden puzzle pieces on one side of the room and the puzzle on another. Voila! Such a small thing made such a big difference.

Brad's occupational therapist explained that it's tied to his arousal level. As I blogged, Brad presents as a sensory disregarder - "ho hum", difficult to stimulate and unmotivated to move. If Brad were a car, his idle would be on low. Seriously, by my count, he's had less than five full blown tantrums in his entire life and he's never had what can be described as a "meltdown." As I've blogged before, he has never once stood up in his crib, without prompting and assistance.

Brad's occupational therapist showed me that getting him to move increases his arousal level. And, in turn, when his arousal level is higher, so too is his level of engagement and spontaneous speech. So to make a long story long, this is why I don't blog about speech therapy. I regard the speech as intrinsically tied to sensory processing and arousal. To blog about communication without the other stuff doesn't make sense. To me, anyway.

Ever wonder why autism diagnosis shows a positive correlation to rainfall? I have a theory: these kids aren't outside much and therefore aren't moving enough. Moving the body forces the left and right hemispheres of the brain to talk to each other, which, in turn, promotes healthy neurological development in all respects. Just sayin. It's possible.

What's the deal with that?

Why do I open my mouth when I apply mascara or eye makeup?

I ask because I think it's some sort of reflex. (Name of reflex? Anyone???) Brad has a similar reflex, but obviously not in a mascara context. When Brad attempts to cut paper with scissors (with his left hand), he splays the fingers of his right hand and opens his mouth. This happens every time, without fail, and he looks tense. His OT says he's overloaded or challenged or something. Maybe it has something to do with concentration?

Just wondering. Has anyone else noticed this with their child, typical or atypical?

One more comment on a comment.

I'm not all piss and vinegar here, and "losing the diagnosis" should be put into perspective. He's lost one dx (PDD-NOS), but he kept the other (DCD). As I blogged, I regard PDD-NOS and DCD as overlapping sets with blurry lines. Brad is just moving to a label that connotes a different type of difference. But I think DCD is a better label because Brad's social impairment can no longer be described as "severe", and the label itself may be setting us back at this point. Here in Massachusetts, an "autism" diagnosis is the kiss of death from an insurance perspective. We're losing OT coverage in a week. I'm going to try to appeal. Perhaps, DCD will help.

In the DCD continuum vein, Anything, Sweetie remarks:

i have recently come to think of the spectrum as a colour wheel, and a term like DCD to be about as helpful as the word "blue-ish".

Point well taken, but I like the word "blue-ish." So many children with autism and sensory processing disorder are hypersensitive, or a combination of hyper- and hypo-sensitive. On the metaphorical color wheel, maybe they're red for hypersenstive, or purple for hyper- and hypo-sensitive. I think Brad is exclusively hyposentive. Like the color blue, he's cool with his sensory intake and expression. I finally feel like we have a label that fits nicely. I have a good framework to understand him, and perhaps some direction to treat him. Sure there are lots of shades of blue, but we can at least say that blue isn't the same as yellow, can we not?

The takeaway.

In comments, LT Mommy and Goodfountain make a compelling case against early diagnosis. These comments have merit, and I could probably be a poster child for the shortcomings of early detection.

My takeaway is different: at 24 months, I believe Brad met the DSM-IV criteria for PDD. During that first evaluation, I recall that, while I was talking to the doctor, Brad flipped over his wooden puzzle, dumped out all of the pieces, and started lining them up on the floor. That stage, when he persevated a lot, only lasted a few months. He didn't respond to name well back then, and he was mostly nonverbal. (When he started speaking, he persevated less.) So I don't fault that doctor for the diagnosis.

I fault her for her prescription for treatment. Effectively, she lumps the autistic spectrum - an extremely heterogenous group - into a homogenous box. If a doctor is going to apply the label liberally, then it's incumbent on the doctor to provide a more nuanced prescription for treatment. And not scare parents into signing up for services that their children don't need. 25 hours per week??? That's a lot of work. If a child doesn't need that, it's irresponsible to make the recommendation.

As I stated above, early detection had its shortcomings in our case. But I know - I'm certain - that there is a poster child for early detection out there. If your child is on the trajectory for classic autism, knowledge is power and time is of the essence. In this blogger's opinion, a parent should not dodge doctors or put off evaluation. The stakes are too high. And no one can force services on your child. The bunker mentality is just as bad, if not worse, than autism hysteria. In this blogger's opinion, there's got to be a better way.

Vent.

Thanks for your comments. (And for indulging my vent.) I realize I have to keep going with the vent. To wit:

In the post and in comments below, I complained that the doctor who first diagnosed Brad wasn't helpful. She examined him in an hour. She produced a form letter at the end, the entirety of which reads as follows, verbatim but redacted:

To whom it may concern:

Bradley X (DOB 01/22/2006) is followed in PAC clinic at HOSPITAL. He has been diagnosed with PDD-NOS. Please refer him for Autism Specialty Services though the Department of Public Health. As is recommended by the National Research Council (2007) and the American Academy of Pediatrics (2007), he requires a minimum of 25 hours a week of individualized instruction to address the core deficits of autism, social communication, and play. I recommend instruction based in ABA, Floortime, or a combination.

I asked her to prognosticate in the general sense, or to reassure me that he would be verbal, since he had good gestural communication. She demurred. She said something like: "sometimes I privately predict a child is mildly affected and it turns out to be more severe, and vice versa, and therefore I don't make predictions." She then drew a line, with typical at one end and classically autistic at the other end. She put a point near the typical end, and said that with services, she was hopeful he would migrate over to typical. This is exactly how that exam went down.

So I left with the impression that without Floortime or ABA, there was a chance he might not acquire speech.

There were a number of red flags here, which I picked up on at the time and which provided a basis for my skepticism:

1) There was no wait for this appointment.

2) It lasted for just an hour.

3) The dx and prescription for treatment were produced and printed in a matter of seconds.

4) She qualified her dx by saying: "I might be wrong."

5) She didn't administer CARS or ADOS.

Back to the issue of acquisition of speech: I did what any parent would do under the circumstances - I opinion shopped. I asked Brad's SLP if she thought Brad would acquire speech. She looked at me like I had two heads. "Will he?" she asked. "He is acquiring speech. Now." She didn't hesitate to say with certainty that Brad would be a verbal child. Now why couldn't the Developmental Pediatrician, an MD, do the same? Another red flag.

Although I was skeptical, I felt the need to do the diligence. I met with an ABA provider, and gave the therapy serious consideration. I decided against it for a number of reasons but it wasn't an easy decision. After finding a provider that would administer Floortime, I signed Brad up for 6 hours per week of that therapy.

When I returned for a routine follow up 3 months later, Brad was significantly more verbal. Ironically, I had fantasies of the doctor undiagnosing him then and there. I couldn't have been more wrong: she barely observed him, and was intent on getting me to increase his number of hours of services. Quantity, not quality, was her focus.

"PDD-NOS not medically descriptive"

Welcome to my world. A world in which, the more I seek clarity, the more it alludes me. Case and point: in August, when I sought a second opinion for Brad's PDD-NOS diagnosis, the doctor told me she didn't think it was PDD, and then went on to tell me it was PDD. (He met the cutoff when the ADOS test was administered.)

Yesterday, I brought Brad back to that same developmental pediatrician for routine follow up. In the waiting room, I was given a one page intake form in which it asked for a brief update, and left a blank for "concerns." I wrote one simple note: "PDD-NOS s/b DCD?"

Well long story short, the doctor agrees. But rather than write, he no longer meets the criteria for PDD, she writes: "Hypotonia; DCD" and she continues: "PDD-NOS not medically descriptive."

So I think Brad has officially lost the PDD diagnosis.

Oh and we get another label. *eyes roll* "Communication disorder" which in theory connotes expressive/receptive language delay PLUS nonverbal/social deficit. I thought I had heard it all, but I had never heard of that one. She calls it the notch down from PDD-NOS. Great, another label. Yes, I googled it, but it isn't worth sharing.

I'm providing an objective account here, but yesterday was a moving day for me, emotionally. It brought back a lot of memories, some of them unpleasant. A lot of what I'm feeling is anger towards the first doctor who diagnosed Brad and suggested he needed 25 hours per week of ABA. She came up with that little nugget after observing him for an hour. I can say with 100% certainty at this juncture, that was a totally inappropriate prescription for treatment.

Anyway, I'm going to stew on this for a while. The journey isn't over for Brad but I think it may be a different kind of journey.

What is intelligence?

It depends who you ask. The "intelligence quotient" test itself has been the subject of much debate because it favors those with stronger language abilities.

In this blogger's opinion, procesing speed is one of many factors that determine one's intelligence. Other factors include analytical intelligence and emotional intelligence.

Women, in general, are faster at processing, and consequently have superior social abilities. But it's not fair to say, as a general matter, that women are smarter than men for that reason, just as it's not fair to say men are smarter than women because in general, there may be a general advantage in analytical thinking.

Brad has a slow and coarse processor, which probably accounts for his language delays, his hypotonia, his lack of coordination and his social impairment. Many children with DCD/dyspraxia share these qualities.

However, I don't think Brad is lacking in intelligence overall. Brad's school district noted he was above his age in "cognitive ability", e.g. shape, number, letter and color identification, which is common for high functioning autism. While the typical developing child has pretend tea parties and the like, the atypical child is developing spacial and visual sense, and other pursuits.

The takeaway here? I blogged below the impairments that DCD causes. But it's not necessarily all bad news...

Musings, Part II: Social Exchanges

Have you ever considered all that was involved in a simple social exchange? I didn't, until ASD became part of my family life.

"There's a lot of data in a face," one of Brad's therapists told me several months ago.

Data? Face? It seemed like an odd statement at the time because, as a typical person, I read faces intuitively, sometimes successfully, sometimes not.

Having a son with ASD forced me to consider the process of social intuition. Take, for example, happiness. How can I tell if some one else is happy? First, words help. If some says, "I'm happy," that's a clear indication of happiness. Second, laughter would be an indication. But what if there are no literal expressions of happiness or laughter. How can I tell? A smile. Eyes light up. It's easy to intuit, but hard to articulate the process.

What about less subtle emotions, such as apprehension. Eyes may widen. Mouth may open. Body may become stiff. There is a lot of data there.

Now consider when some one is talking to you: eyes widen, eyes narrow, mouth opens, body tenses, head turns, words are uttered, posture changes. Data, data, data, and more data.

Now consider a social exhange: you're on the receiving end of all of this data, and in a split second you have to perceive it (i.e. hear the words, see the face), process it (what do the words mean when combined with the gestural communication and the facial expressions) and give it back (i.e. with words or nongestural communication).

Now consider Brad's perceptual abilities: face in the background, appealing visual/spatial stimulus (e.g. letters) in the foreground. And consider Brad's processing abilities: slow and coarse. So when he's in a social encounter, he's bombarded with data which he can't process efficiently, and often that data will be in his background, so he'll disregard it the way we disregard background noise. Other times, he may process it, but very slowly.

Still, he manages to process some of it, and that's an accomplishment in and of itself; he does manage basic reciprocal social exchanges. I'll smile at him and say "Brad!" He'll smile at me and say "Mommy!" Mind you, he didn't start doing this type of exchange until recently, but that small exchange makes me so very hopeful.

Musings, Part I: Foreground/Background

We know that the perceptual abilities of those with autistic spectrum disorders is different. For example, as I blogged, one study showed that those with ASD tend to have eagle eye vision. Individuals with ASD report other differences, including differences in the ability to perceive sight, sound, touch and taste.

I have no idea exactly how Brad takes in the world. However, I do have a theory: his foreground/background are the reverse of typical. Not the exact reverse. But different. For example, I often sleep in an oversized shirt emblazoned with a large "Old Navy" logo. When I wake my typical son, he greets me - sometimes with a smile, sometimes with a frown, but I believe he sees me in the foreground, and my shirt in the background.

With Brad, I think it's the reverse - it's like he sees my shirt in the foreground, and me in the background. Drawn to the visual stimulus, he recites the letters. He may be interested in affirmation for getting the letters correct, which is great, because that's joint attention. He's not detached from me. He just doesn't take me in or experience me the way my typical son does.
Similarly, noises that are in my background, like a plane flying overhead, appear to be in Brad's foreground. And when we go to a restaurant, he has an uncanny ability to pick out a baby crying, even if it's just a dull wimper from across the room.

Intro to Two Part-er

More musing about lofty subject matter: Brad's brain. His processor.

Perception.

Processing.

Expression.

Cognition.

What's going on in there? How does Brad take in the world and how does he synthesize it?

Here, I theorize from a parenting, not scientific, perspective.

Bring it.

Anyone else blogging about DCD from a parenting (not scientific) perspective? Anyone? In the entire blogosphere? This is a condition that NYT reports as affecting 6% of children. I couldn't find anyone. Not a single blogger. I challenge you to find one.

It's on. Winner gets a cookie.

Relationship between DCD and Language Impairment

When Brad was first flagged with DCD, I was confused by the terminology and seemingly conflicting information. Dyspraxia, which is not an official diagnosis, is a broader term, and includes within its scope symptoms such as language delay and social impairment. DCD, by contrast, is defined as a pure motor coordination impairment.

Since then, I've discovered that, although DCD is defined as a pure motor coordination impairment, studies have shown a strong correlation between DCD and language impairment. See, e.g. Comparing Language Profiles: Children with Specific Language Impairment and Developmental Coordination Disorder; Early Identification: Are toddlers with Speech/Language Impairments at Increased Risk for Developmental Coordination Disorder?

Relationship Between DCD and ASD

Isn't this a PDD blog? What is DCD and why am I blogging about it?

Cue the graphic, courtesy of DANDA:

Click here for a better look. (I couldn't quite figure out how to smoosh the graphic into blogger, and preserve the aspect ratio.)

I blogged about the basics of DCD here. The official term is DCD but it is often referred to as "dyspraxia." Its defining quality is poor coordination. However, there is a statistically significant correlation between DCD, and language and social impairment, as well as a litany of other cognitive issues such as poor working memory and poor ability to multitask.

As the graphic illustrates, Developmental Coordination Disorder/Dyspraxia and Autistic Spectrum Disorder are interlocking sets, meaning many individuals have symptoms of both. However, technically, from a diagnostics perspective, an individual cannot have both. That is, if an individual presents with PDD-NOS, DCD is ruled out as a discrete diagnosis. In her "impression" report, Brad's developmental pediatrician indicated an impression of PDD-NOS, and that he tested "signficant for" hypotonia and DCD, but the final diagnosis was PDD-NOS, not DCD.

Anecdotally, many individuals with asperger's and autism identify as "dyspraxic" even though it's not an official diagnosis.

If I were to put Brad on the graphic, I'd place him in the interlocking set between ASD and DCD, closer to the DCD side than the ASD side. And if I were to hazard a guess, I'd say he's going to cross from the interlocking set into the "pure" DCD bubble some time before he turns 6. (In August 2008, Brad's ADOS score was at the cutoff. Plus he has strength in the social domain, a predictive factor for growing out of the diagnosis. For these reasons, I think there's a very strong chance Brad will lose the PDD diagnosis.)

The graphic illustrates, in part, why I abandoned the differential diagnosis. Is he in this bubble or that bubble? In reality, the lines are blurry, the bubbles intersect with each other and Brad's brain is going to change over time. The bottom line is that he's neurologically different. What label is ascribed to that difference at any point and time is less valuable and probative than the overall developmental trajectory.

What does DCD mean to Brad? I blogged about it a bit here. For starters, he walks like he's drunk. Much less so today than 6 months ago, but he still has an uneven gait. He's got terrible fine motor coordination. He's very floppy, low energy, and unmotivated to move. As an example, he never - and I mean never - stands up in his crib. (Yes, he is still in a crib.) To get him up in the morning or at nap, he needs a lot of prompting and assistance. He has never once stood up in his crib unprompted or unassisted. He drooled persistently until he was 2-1/2. He has poor depth perception and poor ability to track things visually.

Each person who has evaluated Brad has noted he splays his fingers. Here's video of it. As I understand it, this is a result of low tone in his fingers and is an indication that he may have difficulty grasping a pencil in the future. The good news on that front is that there are very specific and effective therapies to develop grasping strength

On the speech front, he has delays and motor issues, such as getting stuck on the first syllable (like stuttering), and more recently "elongation" in the middle of a word or a sentence.

Last, he also is very slow at processing information, sensory data, social cues and language. More on that later.

I submit for your consideration an age old question:

Does french fry count as a vegetable?

When Brad was two, he ate squash, peas and sweet potato. One by one, those foods vanished from the repetoire. Now, all we are left with is, yes, the french fry. Does it count? Does it???

One year.

Today marks the one year anniversary of my blog. Just sayin.

(The meaning of the numbers at the bottom right of my Lost-themed posts revealed. Cue the creepy music...)

What is autism?

What is autism?

The parenting community, the autism community, the neurodiversity community, the medical community, the scientific community - each has its own answer. A few of those answers are listed below, in descending order, from progressive to regressive:

(1) An identity, inseparable from the person.

(2) A neurological condition.

(3) A neurological disorder.

(4) A psychological disorder.

(5) A spectrum.

(6) Not a spectrum; a disabling disorder.

(7) Mercury poisoning.

Indeed, the metaphysical confusion (what is autism) was front and center when Brad was first flagged for autism; the ambiguity manifested itself in the diagnostics. I could choose from a litany of specialists, including developmental pediatricians, neurologists and psychologists. We settled on a developmental pediatrican, at the advice of Early Intervention.

If you had asked me "what is autism?" at that time, I would have chosen (6) - not a spectrum; a disabling disorder. Not because I had considered the issue and drawn a conclusion, but rather because everything I knew about autism I learned from mainstream media - AutismSpeaks outreach and Rain Man.

Over time, I learned more about autism, and today, I'm somewhere between (3) and (2) - a neurological disorder to some extent and a neurological condition to a different extent. I reject (1) because I regard autism itself as extrinsic to self, in the metaphysical sense, at least ab initio, at birth.

Another change: at the start of my journey, I was obsessed with finding a differential diagnosis. My child isn't autistic because he's [fill in the blank]. I started with "late talker"/Einstein Syndrome, and then moved onto Sensory Processing Disorder and Dyspraxia. Today, I embrace the idea of the autistic spectrum, and as a corrolary I've abandoned my quest for a differential diagnosis, which I regard as arbitrary at this point.

That having been said, the notions of bright lines and a differential diagnosis are useful with respect to allocation of resources. The service spigot shouldn't be turned on for the whole lot. This is where the politics should catch up to the science and the diagnostics. There should be a fair way to distribute resources. However, creating a fiction that there isn't a spectrum is not the answer.

In the last analysis, I believe that most autism debates, including those that have taken place on my blog, can be attributed to a fundamental difference in regards to the basic metaphysical question.

What is autism to you?