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, October 30, 2009

We vax.

As flu season approaches, I feel compelled to write: we vax.

As in, we fully vaccinate our children, including Brad who is mildly autistic and Jeremy who is allergic to egg.

On the Brad front, there is no doubt in my mind that vaccines don't cause autism. I fear the fallout of widespread vaccine rejection.

On the Jeremy front, he can have egg-based vaccines administered at an allergy clinic. They keep him for observation afterward, and can administer anti-histimine, steroids or epi-pen if needed. For the record, Jeremy is five, has received several egg-based vaccines and has never had an anaphalactic reaction to a vaccine. (He did have an anaphalactic reaction when eating eggs, scrambled eggs, undiluted, at age one.)

Be safe, everyone.

Added: An Epidemic of Fear [via Wired]

Sunday, October 25, 2009

A beautiful memory.

And now for something completely different.

Free live streaming by Ustream

This week only, witness the genius that is Stephen Wiltshire, an autistic savant. It's a live stream of him drawing a cityscape of New York for CBSNews. He's drawing it entirely from memory after one helicopter ride above the city. The Early Show is featuring him this week. Click here for status updates, e.g., when he is drawing and for how long.


Thursday, October 22, 2009

The best things in life are free.

Recently, I asked Brad's occupational therapist for her thoughts on treatment, short-term and long-term. Our ration of insurance-approved visits will be up in February 2010.

Short term, she's going to continue strength building, grasping exercises, fine motor exercises and the play therapy (Floortime-ish).

For the long-term, when our insurance benefit is up, her sage advice: "Play outside a lot, and have him go on a lot of playdates."

"No, really," I said.

"Really," she said.

"What about occupational therapy? Or physical therapy? Services???" I stammered. "He must need something. Look at him. He still has terrible postural stability."

"Waste of time and money," she replied. "You're buckling him up, and confining him in a car, to drive him somewhere so that he can exercise. Plus, a one-on-one service hour deprives him of play with his peers."

At this stage, I can't say whether Brad's OT is right or wrong, but her common sense advice does resonate with me. Compare and contrast to the advice of Brad's private speech language pathologist (who happens to be quite thorough). Brad's SLP told me Brad's IEP is wholly inadequate and that he needs more service hours at school. Turns out, many children in my school district with a diagnosis do get more service hours in an ABA based program - even the borderline are-they-or-aren't-they PDD kids. Brad's SLP relayed this recommendation to me over the summer, and I have ignored her advice for the very reason Brad's OT cited: more one on one service time at school deprives of playdates and freeplay with Jeremy, which I think is valuable, socially - more valuable than being holed up in a classroom.

So for the time being, I'm inclined to place more stock in the common sense approach of Brad's OT than his SLP. Am I right or wrong? Only time will tell.

Friday, October 16, 2009

Prevalence of Prevalence Statistics

In the wake of the recently published autism prevalence statistics, comes Behind the Autism Statistics, by the producer of Autistic-Like: Graham's Story. Behind the Autism Statistics is an insightful editorial, and I could relate to chunks of it from a parenting perspective, particularly being pushed into ABA and feeling as though it were a bad fit.

What struck me as I was reading it was this little gem:
A central goal of the SPD Foundation is to ensure that the disorder [sensory processing disorder], now estimated to affect as many as 1 in 20 children, is included in the DSM-V, which would turn it into an official diagnosis that would come with much-needed help.
Irony alert! An editorial that criticizes the establishment for distorting autism prevalence, suggests that the SPD net may be cast at 1 in 20.

From a parenting perspective, I've arrived at a place where I am fully at peace with the blurriness of the lines. I believe that "autistic-like" SPD is distinguishable from autism, if at all, in degree-only. And degree is not for nothing. Degree can be the difference between talking and not talking, and dependence and independence. I don't minimize the significance of degree. I just question the need for a new, potentially ill-defined label.

If treatment is the issue, and I share this concern, then why not lobby to reform the prescription for treatment of autism?

Friday, October 9, 2009

Geek + Geek = ?

While mainstream media is in a tizzy about reports of an increase in the rate of autism, I've been pondering something related, topical and near and dear to my heart: Geek Syndrome.

According to a recent study, autism does not appear to correlate to geeks procreating with other geeks, as previously hypothesized by Wired Magazine:
One provocative hypothesis that might account for the rise of spectrum disorders in technically adept communities like Silicon Valley, some geneticists speculate, is an increase in assortative mating. Superficially, assortative mating is the blond gentleman who prefers blondes; the hyperverbal intellectual who meets her soul mate in the therapist's waiting room. There are additional pressures and incentives for autistic people to find companionship - if they wish to do so - with someone who is also on the spectrum. Grandin writes, "Marriages work out best when two people with autism marry or when a person marries a handicapped or eccentric spouse.... They are attracted because their intellects work on a similar wavelength."
But hold the phone. The same study indicates that mothers in "highly technical" fields were 2.5 more likely to have geek spawn...er.... a child on the spectrum.

I look at Brad. I look at myself. Coincidence? I wonder.


[Via Left Brain/Right Brain]

Thursday, October 1, 2009

Just Asking, Part I

What does PDD-NOS look like in an adult? Where are the support groups for PDD-NOS (support for those who have it and parenting support)?

I know what asperger's looks like in an adult. For starters, I worked with one once. Interesting story, but I won't get into that here. Also, there are plenty of media depictions of adults with asperger's. Look up asperger's support, and there are several centers throughout the region that I live in.

But PDD-NOS? Nothing. My hypothesis: an adult with PDD-NOS probably identifies as "autistic" as an adult. (Or typical. Or asperger's.) Which is true, because PDD-NOS is on the autistic spectrum. So perhaps an adult who was diagnosed with PDD-NOS as a child and whose diagnosis "sticks" will identify as autistic and seek out support through autism support networks. Likewise, there is little by way of parenting support specific to PDD-NOS.

Another hypothesis: "PDD-NOS" is a label so meaningless that no one - not even those who have it - want to use it.

Of course, there are a lot of autism support groups and resources for parents. But as I learned early on, and much to my chagrin, "if you've met one autistic person, you've met one autistic person." Finding that commonality is challenging. I'm sure parents of children from every corner of the spectrum can relate to that sentiment.