"Ho-hum"

The Out of Sync Child explicates the nebulous condition referred to as "sensory processing disorder" ("SPD"). By way of background, sensory processing disorder is not an official diagnosis. Lucy Jane Miller, an authority on the topic, explains:

It's hard to get funding for research because it's not in the DSM, but we can't get in the DSM without the research. It's a catch-22.

The Out of Sync Child sets forth the three general profiles of children with SPD:

1. Sensory Overresponsivity: The Sensory Avoider - "Oh, no!"
2. Sensory Seeking: The Sensory Craver - "More, more!"
3. Sensory Underresponsivity: The Sensory Disregarder - "Ho, hum"

Brad fits the "ho, hum" profile (described in detail below), almost to a tee:

The child reacts less intensely to sensations than do typically developing children. This sensory disregarder needs a lot of stimulation just to achieve ordinary arousal or alertness. His response to the world is "Ho, hum."

The child may be withdrawn and difficult to engage. Or, he may be so gifted and creative that he does not notice sensory stimuli because he is self-absorbed and preoccupied with intellectual pursuits. Determining the underlying cause of a child's problem is essential, and a therapist's art and science are required to figure it out.

The sensory disregarder may apper to be a "space cadet" or "out to lunch." He may be passive, lack initiative and unable to get going. He may tire easily and seem sleepy, and as a baby, he may have slept and slept and slept.

Source: The Out of Sync Child, p. 72

Underresponders often have sensory-based postural disorder, described below:

Postural Disorder causes the child to have poor posture. She may have low musle tone and be "loose and floppy." She slouches while sitting or standing and slumps over the desk and dining room table. This droopy child is beseiged by the "gravity monster." The reason may be the inefficient sensory processing of vestibular and proprioceptive sensations about where her body is in space and what it is doing.

According to Dr. Ayres, "The major symptoms manifested by children with this type of dysfunction....are related to the fact that man is a bilateral and symmetrical being." When a child has not developed a sense of two-sidedness, Postural Disorder may interfere with nature's plan, which is to keep upright and ready to spring into action, using both sides of the body together or separately as needed.

The child may have a problem with bilateral integration, the neurological process of connecting sensations from both sides of the body. The result is poor bilateral coordination, the ability to use both sides of the body together. For instance, she may struggle to gallop, skip, or pedal a bicycle.

She may have difficulties positioning her body and maintaining her equilibrium. Getting into different positions, such as kneeling or stretching to her tiptoes, without tipping over may also be a challenge.

Often the child will have poor ocular (eye movement) control, affecting binocularity - the use of both eyes together as a team. This will hinder depth perception, body movement, motor planning, and reaching for objects.

Source: The Out of Sync Child (pgs. 75, 76).

Brad presents with the symptoms of postural disorder, although I did not notice them until a skilled occupational therapist brought them to my attention. He has weak trunk strength and he's floppy. However, these symptoms have decreased with therapy. (He receives occupational therapy three times per week, and we do daily exercises.) He still drools. No sign of pedaling, although he is only 2.5 years old, so that may not be significant. His bilateral coordination is weak, as evident when he completes a puzzle or the shape-sorter.

As an aside, perhaps the apple doesn't fall far from the tree. I have terrible depth perception, and low muscle tone. (Of course, I haven't been to the gym in a decade but that's a different story.) However, what ever sensory issues I have never interfered with acquisition of language, as I believe Brad's issues are.

So I think the "ho-hum" label is a keeper for Brad. After all, I've never been one to avoid a label or the doctors/therapists that apply it.

Is your child "ho-hum"?

Second Opinion: The Narrative

A Little Bit Autistic is feeling a little bit less autistic today.

On Friday, Brad was evaluated for a second opinion on his PDD-NOS diagnosis. Bottom line: still PDD-NOS, but the prognosis and plan for treatment are significantly changed.

Brad's evaluation lasted three hours. The developmental pediatrician is conducting a study relating to autistic spectrum disorders, the observation for which would be concurrent with Brad's evaluation. (I consented to the study in advance.) She administered two tests: Mullens and ADOS. In lay terms, Mullens is intended to measure Brad developmentally, but is not an "autism test" per se. ADOS is a standard test used to evaluate autism.

Thirty minutes into Mullens, the doctor offered an unsolicited remark: "I don't think this is PDD."

My jaw dropped. I was stunned. I didn't press her for clarification. I just sat in stunned silence.

During the ADOS test, Brad did well, but demonstrated PDD traits, e.g. mild aloofness and repetitive speech.

When all was said and done, the doctor told me that Brad has PDD, but just barely. One might even say he has the much-derided "checklist PDD" that we discussed in this thread, i.e. he meets the diagnostic criteria but perhaps lacks the essence of PDD. She told me that she won't include Brad in her study out of concern that he will "mess up the data." She added that his prognosis is good. It's extremely unlikely that PDD will be part of Brad's life long-term.

She added a novel observation: his fine motor skills and coordination are lagging for his age. She gave him two new diagnoses: hypotonia and lack of coordination. This was not entirely surprising, since Brad is in occupational therapy and his therapist had informed me of these issues. I just figured that they were part and parcel of PDD. The doctor seemed to indicate that his fine motor and coordination deficits go beyond the norm. FYI: Brad never missed a motor milestone when he was an infant. And to clarify, he eats fine with a spoon, and can thread a bead, so it's not like he's obviously or severely impaired.

Because of the motor/coordination issues, we're going to explore two possible neurological causes:

1) Mitochondrial disorder. This is best known as the metabolic disorder suffered by Hannah Poling, the subject of a controversial and highly-publicized government settlement. Brad is going to have a series of blood and urine tests. If anything comes up positive, then we get a referral for another doc.

2) Jaundice. Brad developed jaundice a few days after he was born. I don't know the levels, but it required him to undergo phototherapy, i.e. the "billi-lights". Apparently, severe jaundice can cause brain damage. However, I doubt there will be a connection because I believe Brad's billliruben was never dangerously high.

As for treatment, the doctor was very happy with the present composition of services. Her only recommendation was to add physical therapy to the roster to address the low muscle tone (hypotonia).