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.

Friday, September 26, 2008

On Occupational Therapy

By popular demand.

Children on the spectrum have a wide variety of sensory challenges. A good OT can identify those challenges and provide the child the sensory input the child needs to feel centered. In Thinking in Pictures, Temple Grandin remarks that until she experienced the "squeeze machine" she invented, she wasn't able to experience a very simple emotion - pleasure. It's a powerful testimonial. In Engaging Autism, Greenspan and Wieder also write of the sensory challenges and advise parents to integrate OT principles with the "Floortime" routine. Last, there are studies that show positive correlation between eye contact and vestibular input among children with autism. It's like finding a sweet spot, and that sweet spot can unlock the door to emotions like pleasure, but also a higher level of engagement. A good OT can do that.

Who's a good OT? One who's worked extensively with children on the spectrum. One who's talented.

My practical advice for the newly diagnosed: if your child is under the age of 3, you're covered by your state's zero to three program, e.g. Early Intervention. What I learned through this process is that you may also qualify for an OT benefit through private insurance, if your child is covered by private insurance. We use a private OT, and my husband's insurance covers the benefit. So if the OT assigned to your child through Early Intervention (or other zero to three program) can't find that sweet spot, it might be time to interview some one new and you may have an untapped resource (private insurance) at your disposal.

We're fortunate in that Brad's OT not only has experience with children on the spectrum, she's certified in Floortime. As for what works for Brad, he benefits from procieptive and vestibular input. He works with the exercise ball and the sit and spin. Weather permitting, he works on our jungle gym - mostly the slide. She does all sorts of exercises with him. But what makes her extra effective is that she integrates the Floortime principles with the OT. She tries to engage him, using high emotional affect, following his lead to an extent and attempting eye contact when possible. She finds that sweet spot.

Compare and contrast to Brad's developmental therapy sessions, which are hit or miss. He goes through long stretches of persevating, zoning out and repetitive speech, in spite of the therapist's best efforts. Recently, we had the developmental therapist do a joint session with the OT, so she could learn how to get him to the top of his range. As a result, we've already seen an improvement in the quality of the developmental therapy sessions.

My two cents.

Tuesday, September 23, 2008

Coming in 2009.

Hyperlexia: A Literary Journal Celebrating the Autistic Spectrum.

In an interview, the editors describe the purpose of the journal:

There is so much noise out there about autism - much of it hyperbolic, stereotyped, biased, inaccurate, and hysterical. Our hope is to create an arena where we can get to some truths about what it really is to be autistic and to love people who are autistic.

Too true, and amen to that.

FYI, the editors are soliciting essays. The deadline for submission is December 31, 2008. See the website for details.

Kerry Cohen, one of the editors, authored this story, which resonated with me. I feel as though Brad and I are on a similar journey as she and her son, and I share her values. I look forward to the journal's publication.

Friday, September 19, 2008

Mythbusters, Part II: Eye Contact

"Children with autism don't make eye contact."

This was an assumption I labored under before Brad was diagnosed. This is false. According to Medical News Today (a wire service), an individual with autism may present with:
...[m]uch less eye contact than a person without autism. However, many people with autism do make eye contact, but often in a way that is different when compared to an individual without autism.
Typically developing children use gaze cognitively to read nonverbal social cues. They are said to use "gaze monitoring" or use gaze to "check in" periodically. I believe this is, in part, what distinguishes children on the spectrum from typically developing children. Speaking from our experience, at 24 months, Brad made eye contact but as I indicate in the margin of this blog, he didn't use gaze the way a typically developing child does.

Mythbusters, Part I: The Infallible Gut

No, not the leaky gut, the infallible gut.

"If their child was PDD, they know it in their gut..."

So writes a parent of a so-called "late talking" child. I'm here to dispel that myth. While many parents recognize their child's PDD before diagnosis, in my experience, it's quite the opposite for a majority of parents. In fact, most parents haven't even heard of PDD. Of all the barometers for autism, a parent's gut is perhaps the least reliable. And if your child receives the diagnosis and you cling to your gut, the lightbulb won't go on.

Now I'm not arguing against skepticism, nor am I suggesting that there's no value to a mother's intuition. However, acceptance laced with skepticism is quite different from denial.

But reading the sentence excerpted above was a revelation for me. I had always been puzzled by the late talker yahoo group's mission statement:

This list does not serve those discussing vaccinations, special diets, sensory therapies or knowingly accepted false diagnosis.
How do you knowingly accept a false diagnosis? Does this idea presuppose that the doctor tells you it's a false diagnosis or a diagnosis for services? Does that even happen?

But now I get it. You know it's a false diagnosis, because: you know. In your gut. Your infallible gut, which isn't really infallible.

Update: Note - the late talker group changed its mission statement. The excerpt above was accurate as of the date the post was published.

Thursday, September 18, 2008

Developmental Coordination Disorder

At Brad's recent evaluation (second opinion), the developmental pediatrician gave Brad a new diagnosis - "developmental coordination disorder" or "DCD." DCD is often used interchangeably with the term "dyspraxia." In theory, DCD is the term favored in the US, although in my experience, dyspraxia is widely used in common parlance in the US.

The New York Times reports that approximately 6% of school age children have some degree of this disorder. Like PDD and sensory processing disorder, DCD is hard to define.

The DSM-IV criteria follows:
A. Performance in daily activities that require motor coordination is substantially below that expected given the person's chronological age and measured Intelligence. This may be manifested by marked delays in achieving motor milestones (e.g., walking, crawling. sitting), dropping things, "clumsiness," poor performance in sports, or poor handwriting.

B. The disturbance in Criterion A significantly interferes with academic achievement or activities of daily living.

C. The disturbance is not due to a general medical condition (e.g., cerebral palsy, hemiplegia. or muscular dystrophy) and does not meet criteria for a Pervasive Developmental Disorder.

D. If Mental Retardation is present, the motor difficulties are in excess of those usually associated with it.
In light of C (above), technically, Brad's PDD diagnosis should rule out DCD. (Or maybe it's the other way around?) Moving on.

Wiki describes the motor challenges associated with DCD as follows:
  • Poor timing.
  • Poor balance (sometimes even falling over in mid-step). Tripping over one's own feet is also not uncommon.
  • Difficulty combining movements into a controlled sequence.
  • Difficulty remembering the next movement in a sequence.
  • Problems with spatial awareness, or proprioception.
  • Some people with dyspraxia have trouble picking up and holding onto simple objects due to poor muscle tone.
  • This disorder can cause an individual to be clumsy to the point of knocking things over and bumping into people accidentally.
  • Some dyspraxics have difficulty in determining left from right.
  • Cross-laterality, ambidexterity, and a shift in the preferred hand are also common in people with dyspraxia.
  • Dyspraxics may also have trouble determining the distance between them and other objects.
  • Some dyspraxics have difficulty achieving and maintaining continence either of bladder or bowel or both. Bedwetting or nocturnal enuresis is common.
Wiki indicates that the following speech and language problems are associated with DCD:
  • Difficulties controlling the speech organs.
  • Difficulties making speech sounds
  • Difficulty sequencing sounds within a word
  • Forming words into sentences
  • Difficulty controlling breathing and phonation.
  • Slow language development.
  • Difficulty with feeding
The Wiki description certainly fits Brad's present condition, but I'm skeptical as to the role of dyspraxia with respect to Brad's speech for two reasons. First, the Wiki description is unofficial and therefore should not be relied upon as authority. Second, Brad had a significant receptive language deficit at 24 months. (Early Intevention pegged his receptive language at 10 months when he was 24 months old.) My understanding is that a motor planning deficit, such as DCD, does not cause a receptive language delay (although it could cause an expressive language delay because talking itself requires motor coordination or praxis). Moreover, DCD doesn't account for the Brad's social deficits. While dyspraxia may play a role in Brad's speech challenges today, including phonological problems and stuttering (or "groping"), DCD doesn't appear to tell the whole story.

Update: The DCD label was included in Brad's "impression" report; it was part of his official diagnosis.

Friday, September 12, 2008


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"?

Thursday, September 11, 2008

Brad on film.

Brad's SLP is filming him today. She's taking a class on Floortime, and he's her case study. We're just happy to help her in any way we can, after all she's done for Brad.

Friday, September 5, 2008

Progress Report, By the Numbers

Brad at 24 months
Per Early Intervention -

Receptive communication: 10 months
Expressive communication: 14 months

Brad at 31 months
Per Mullen Scales of Early Learning, administered by Brad's developmental pediatrician -

Receptive communication: 30 months
Expressive communication: 35 months

Bottom line
Receptive language: 20 months improvement over 7 months.
Expressive language: 21 months improvement over 7 months.