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, February 29, 2008

Navigating the maze.

It's been almost a month since Brad was diagnosed. The developmental pediatrician who provided the diagnosis recommended 25 hours of service per week. Unfortunately, all of the service providers, except one, that serve my area are ABA providers who seek to "normalize" my son. Mind you, Brad presents with no - and I mean zero - behaviorial issues now. But the ethic seems to be that he needs behavioral conditioning.

I've decided to buck the system and go with floortime (child-directed) rather than ABA. Unfortunately, there's only one provider that serves my town. After stalking them for two weeks - they literally don't return calls - I finally got through. I'm getting a referral next week. Not sure when services will start. And the jury is out on the quality of these services.

To be continued...

Tuesday, February 26, 2008


To reflect my current mood, I decided to change the name of my blog from "PDD-SOS" to "A Little Bit Autistic."

Sunday, February 24, 2008


Brad's speech is starting to take off. He has more single words than I can count, including words for each of his foods and books. Also, he uses the verbs "open", "help" and "go."

And he even said "mama" yesterday. Not spontaneously, but after I coached him. I'm still waiting for him to say "mama" spontaneously. I won't say that my feelings aren't hurt that Brad asks for his trains by name ("Thomas" and "Percy") spontaneously, but not "mama".

Sunday, February 17, 2008

I'm on the beat.

In an effort to gain perspective from a variety of sources, I joined a Yahoo group for parents of "late talkers." It's a prolific group with hundreds of members who believe that their children have Einstein Syndrome, rather than autism. And for the record, I believe that many children that talk late DO fall into the category of "late talker" rather than autistic.

The group has a great resource page, with plenty of links to helpful material for late talkers. So far, the group comments have been comprised mostly of exchanging tips ranging from things like preschool to flashcards.

One commenter, however, confirmed what I feared. She posted that her daughter was displaying echolia at 3.5 years, uttering scripts at inappropriate times, clearly a red flag for autism. She wrote that she was crying as she was typing the email. So, the group has a seductive quality for people who aren't ready to accept the truth. My heart goes out to her, as I'm going through that acceptance stage myself.

I'm going to continue to keep my ear to the ground and keep up with the late talker community, with attention to keeping denial in check. I can't go back into denial, and go through this acceptance stage again. But I do want to explore therapies that work for late talkers. Plus, as my pediatrician points out, there is an aspect of self-preservation among the early intervention community. To the extent there is a bias in favor of over-diagnosis, I can only benefit from gaining perspective from outside of the early intervention community.

Wednesday, February 13, 2008

I'm 0 for 2.

When I maxed out on trolling the internet, I decided to buy a few books. As fascinating as the firsthand accounts of other parents were, I realized that they weren't entirely reliable because they were, after all, just anecdotal stories. I decided I was ready for serious study and hard data.
Out of curiosity, I bought The Einstein Syndrome. Everyone knows some one who was a late talker. This can't be imagined phenomenon. But what distinguishes a late talker from a child on the spectrum at age 2? How can one make a differential diagnosis? The book answers neither of these questions. Instead, the book describes its subjects, late talkers such as the author's son, as brilliant, and disparages children with ASDs, refering to autistic savants and "idiot savants." The book is so steeped in elitism, it made me want to vomit. Gag-reflex aside, the author's elitism clouds his judgement. The book posits the theory that analytical skill, in lay terms, hogs a late talker's grey matter, thus leaving less grey matter to acquire speech. The basis for the theory is an overdeveloped lobe of Einstein's brain. (Who knew they autopsied that sucker for posterity?) But the author doesn't address that children with ASDs are smilarly regarded to have "extreme male brain," leaving me to conclude that his "research" is self-serving and biassed.

The other book I purchased was the Autism Sourcebook. Little did I know when I bought the book that the author is an ABA zealot. She goes as far as to recommend that toddlers forego nap in favor of more ABA hours. Lets consider this proposition for a moment. Sleep is essential to the development of the mind. So she advises that children with a pervasive development disorder forego that which essential to development?

Sunday, February 10, 2008

Critique of a Triangle

Open Memo to the authors of the Diagnostic and Statistical Manual of Mental Disorders (DSM IV):

My son's developmental pediatrist explained to me that autistic spectrum disorders are defined by reference to a triangle, with one point being impairment of communication, one point being impairment of social interaction, and the third point being "stereotyped patterns of behavior, interests and activities."

Lets think about the analytical value of those diagnostic criteria, as applied to a two year old. The first two criteria can be applied with some degree of certainty.

But the third point - "stereotyped patterns of behavior, interests and activities"? It's absurd to assign diagnostic value to this criteria - toddlers by nature cling to routine. I'd be worred about a toddler that didn't exhibit stereotyped patterns of behavior. "Does your son have trouble with transitions?" the diagnostician asked. Hello? Have you ever observed a normal or neurotypical toddler before??? ALL toddlers have difficulty with transitions. Another dumb question: "Does your son cling to nonfunctional routines?" Please.

I'm calling it. The triangle is so yesterday, when diagnosis wasn't made until grade school. In this day and age, with early detection, that sucker should be called a line. Two points. Got that, DSM-IV? It's a line.

Saturday, February 9, 2008

Brad's Two Year Well-baby Appointment

February 8, 2008

My pediatrician informed me that there's an explosion in diagnoses at the "mild" end of the spectrum. He's treated (as a pediatrician) a few such cases, where the individual is "off the spectrum" in a year or two. He overtly cast skepticism on the treatment, ie services. Would they have grown out of it without services, he asks. We don't know, he says.

Parents of autistics complain that pediatricians are too dismissive of early parental reports of abnormality. Me? I cling to my pediatrician's skepticism like a life-raft.

Thursday, February 7, 2008

Must conform.

February 2, 2008

How far apart is the DAN ("defeat autism now") crowd from the Nazis? Really. They both advocate extermination of sorts.

Eye Infection

February 1, 2008

In the wake of all the crying, I've managed to infect my eye. (Each time my contact would slip out, and I'd just pop it back in without washing my hand.) It looks like conjunctivitis. Now my physical being matches my mental being. I'm a mess, inside and out.

Google PhD, Part II

January 31, 2008

What's the deal with the biomed community? And why do people hate Jenny McCarthy so much? Oh, and high-functional autistics rock.

Google PhD, Part I

January 30, 2008

I'm well on my way to becoming a google pHd, endlessly trolling the internet to gain any morsel of understanding. But the more I research PDD-NOS, the more confused I become. Whoever coined the adage "if you've met one autistic person, you've met one autistic person" can suck it. As though there is no generalization one can make about autism. No development trajectory. I'm calling bullshit on the adage. That's right. There IS a development trajectory for individuals on each end of the spectrum. There must be. So why can't anyone tell me what it is???

So in the absence of any meaningful information about development (or the lack thereof) I cling to every subjective anecdote as though it were the key to enlightenment.

January 29, 2008, Work Day

Close the door to my office. Cry. Lather, rinse, repeat.

Evening of Diagnosis

January 28, 2008

Emotional devestation. Finally fall asleep, only to wake up, have it hit me, and sob.

This happens to other people. Not me. I always thought to myself - I'd rather have a Downs baby than an autistic. A Downs baby would be affectionate and would love me. Autistic children don't say "I love you." What do you do with that? To feel that planet of love for a child and never have that feeling returned to you? What could be more cruel?

The Day of Brad's Diagnosis

January 28, 2008

Backstory: I got an appointment with the developmental specialist doctor before I could get an appointment with a pediatric audiologist. I still haven't gotten Brad's hearing checked. That appointment is next week.

The doctor examined Brad for one hour. And that's all it took for her to put Brad on the autistic spectrum. One hour to diagnose an illness that lasts a lifetime.

Meet Brad.

This is him at 18 months.

"Early intervention sucks"

No, I don't really think that early intervention sucks. On the contrary.

The heading of this post - my inaugural post - was the first thing I googled when Early Intervention flagged my son for autism. Self-serving quacks, I thought. There must be a gripe site dedicated to them.

And that's how my journey began. Denial and anger. That was January 25, 2008, just 13 days ago.

Even Google knew the error of my ways. My search prompted it to ask: "Did you mean to search for early intervention success?"

Friday, February 1, 2008

For the archives.

This content used to be in my sidebar. I moved it to archives because it's dated at this point, and also because, well, it's a little silly. I mean, neurotypicals don't have a monopoly on pointing. However, I've chosen to archive it, rather than delete it all together, because it is an indication of my rather primitive and obsessive thinking at the time I put the list together, i.e. is he or isn't he??? Mind you, I'm still confused, but I'm passed obsessing over is he or isn't he.


Brad was diagnosed with PDD-NOS at 24 months.

"Neurotypical Traits":
1) He smiles.

2) He makes eye contact.

3) He points.

4) He imitates.

5) He follows commands.

6) He initiates play.

7) He likes peek-a-boo.

"Autistic Traits" :
1) He lines up his blocks and his cars; also drawn to stacking things.

2) He has a speech delay; at 24 months, about a dozen words; at 25 months, labeling many things in his environment and putting two words together; at 30 months, labeling almost all things in environment and speaking in 3-5 word sentences.

3) He apparently doesn't use gaze to regulate social interactions to the satisfaction of those who have evaluated him. (Me, bitter? Nahhhh.)

4) Under-reactive to sensory data; often needs tactile stimulation to get his attention; seeks vestibular stimulation, e.g. squats and bounces on his ball.