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.

Tuesday, March 31, 2009

Saturday, March 28, 2009


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.

Thursday, March 26, 2009

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. HappĂ©, 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.

Thursday, March 19, 2009

Sunday, March 15, 2009

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.

Thursday, March 12, 2009

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.

Friday, March 6, 2009

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?

Sunday, March 1, 2009

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.


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.