Our first developmental pediatrician appointment was a joke.
I cried all the way there. I was terrified down to the marrow of my being that a certified medical professional was going to bring the disaster called AUTISM crashing down on us. Mr. Man thought I was being ridiculous. After all, autism is like Rain Man and he obviously is not counting toothpicks, so...obviously I was exaggerating and panicking for good reason.
But...I had been reading things. Blogs and diary accounts of mothers that had children with autism that came up when I googled Boy Wonder's quirks. Not talking. Turning in a circle. Lining up his toys. Stopping to study wheels like he was tiny caveman who'd never seen them before. Tantrums that could not be stopped. Not responding to his name. There was one lady's account, whose little boy was barely older than BW. His diagnosis was PDD-NOS, his symptoms an eerie echo of my own child's.
Pervasive Developmental Disorder- Not Otherwise Specified.
We walked into the appointment to find a doctor very near retirement age. Maybe past retirement age. I immediately balked because I have a problem with paternalistic doctors. He read our paperwork, asked us the same questions for which I'd already submitted written answers. Questions about his birth, complications, baby milestones. Mostly it was an excuse to watch BW as he puttered around the room, looking at toys and ignoring us.
"Call him over to you," he instructed.
"Boy Wonder," I said. His little two and a half year old self played on, oblivious.
"Boy Wonder." Nothing.
"Boy Wonder!" I practically shouted. His little head jerked up, surprised. He looked me in the eye and I smiled at him. See, not autistic!
He toddled toward me and crawled up in my lap for a snuggle. I nuzzled his soft baby hair and held him close.
"He seems very attached to you," the doctor mused, noting something on his clipboard.
"Yes, he's very affectionate," I replied.
After 15 minutes, he gave us the verdict. PDD-NOS. He needed speech and occupational therapy. One day he might outgrow the diagnosis!
What do we do about regular things, I asked forlornly. How do we take him to restaurants and the store and teach him to behave?
You don't. That was his answer. Also you should read Dr. Brazelton (whom he studied with at some point), that will help with behavior problems. (HAHAHAHAHA. Riiiight.)
And after we booked his speech therapist appointment was booked, we were sent on our way, without even a handout. When we got in the car, Mr. Man said "Well, at least it's not autism. It's just a delay."
"No," I cried as we started to drive away, silent tears sliding down my face. "No, PDD-NOS is a form of autism."
And that was the beginning.
In the months that followed, I found numerous cases where doctors, trying not to panic parents, had initially diagnosed PDD-NOS. This prevented hysterical in their offices where they would have to deal with it. Let them use the internet to figure it out at home! Don't say the A word!
They have been trying to change the diagnostic labels for Asperger's and autism for years now. The DSM-V has finally announced what the diagnostic label will be. ASD- Autism Spectrum Disorder.
Now Asperger's, classic autism, PDD-NOS will all be Autism Spectrum Disorder.
http://www.msnbc.msn.com/id/50041812/ns/health-mental_health/#.ULvztmg1YlI
This panics the crap out of people, because these labels are what people need to get services. But I think lumping everyone in one category will be beneficial. I myself am already tired of explaining the differences between Asperger's, high functioning autism, low-functioning autism and PDD-NOS.
(For the record- Asperger's means they never had a speech delay, HFA means the had a speech delay but now can speak, low-functioning autism means they have no or little speech, and PDD-NOS means they don't have all the symptoms, just some. ) But people with Asperger's can have just as many issues as people with classic autism, and people who are non-verbal are can use other means to speak sometimes. It's such a huge spectrum of abilities and splinter skills that I like ASD better. And it means that it's a lot less likely that parents can walk out of a doctor's office not realizing their kid is autistic because the doctor didn't want to panic anyone.
It would take another 18 months, a psychologist, 2 days of testing and $1800 for someone to tell us what we already knew.
High functioning classic autism.
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