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.

Saturday, February 28, 2009

"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.

Thursday, February 19, 2009

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.





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.

Monday, February 16, 2009

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.

Thursday, February 12, 2009

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???

Saturday, February 7, 2009

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...)

Friday, February 6, 2009

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?