As it worked out, the appointment we were given to go to the city for an evaluation at the autism center was in August of 2007. A. would be just over 2 1/2 at the time. Coincidentally, it also fell during the days that my parents would be in the Midwest visiting us. Though it certainly wasn’t on my list of “things I wanted to do with my out-of-town family”, I wasn’t going to turn it down. It ended up being a good thing, as my mom was able to babysit then 1 1/2 year old C. while my dad and I drove A. in to the evaluation.
I remember everything about that trip. I remember stopping at Burger King and grabbing two black coffees and two Hamlets… and a side of hash browns for my quiet little boy in the backseat. I remember that the sun was still so low in the sky as passed through Tipton on our way to Indianapolis. I remember my dad suggesting I change lanes since I kept getting stuck behind people who were turning and my refusal because I knew that other lane eventually ended (never mind that I had a good three miles before that happened). I remember the stack of paperwork I filled out and listening to the conversations around me. I vividly remember the mother of a preteen filling out a form who questioned how she was supposed to assign a numerical value to the grades he was getting in school. Ultimately, she concluded that since “D” was the fourth letter of the alphabet, he must be getting a 4.0. I admit that I stifled a grin at that one.
And I remember the big, circular rug they had in the waiting room. It had the entire alphabet spread around, with a picture to represent each letter. A. loved it. He loved it when I’d ask him to find different items or if I asked him what he could find that started with “?” . I couldn’t stump him and neither could Papa.
(A. used to love to throw clothes in the crib with C… it made her collapse with giggles. Here, you can see him jumping, which happened a LOT.)
When we were called back, we went into what looked more like an office than an exam room. There were lots of toys for A. to explore and a thick, cushy leather chair for me to sit in.
And the questions began.
“So how many words does he say?”
“Does he engage in any repetitive behaviors?”
Well, he jumps. A lot.
“Does he ever make impulsive, fearless moves like try to escape from you or run outside without telling you?”
“Is he extremely particular about how his toys or books are arranged?”
Not really. He might line things up, but he doesn’t care if I change it.
“Any history of mental illness?”
“Can you tell me about how many tantrums he has?”
I can think of two…
No… two. Total. I can only think of two notable tantrums he has ever had.
“Describe his behavioral problems..”
Um. I don’t know. He’s a happy little kid. He’s generally really good.
“How is his eating?”
Fine. Good, I’d say. He had Crab Risotto with goat cheese last night.
“Is he detached, would you say?”
He’s my snuggle bug. He’s affectionate. His eye contact isn’t great, though…
And on and on it went. I worked so hard to be honest and accurate. I didn’t want to “lead” the therapist to any particular conclusion and I wasn’t trying to hide anything. While a part of me was devastated to think my child might be autistic, another part of me was so desperate for an answer. So I just did my best to give a clear, factual account of who my little boy was.
Do you have any idea how hard it is to hear someone break down your child’s entire character into a series of simple questions? It felt all kinds of wrong, but I knew he was doing the best he could with the evaluation tools that were available.
When all was said and done, the therapist sat back in his chair and looked me in the eye.
“I don’t believe your son is truly autistic,” he began. ”His behaviors just are not consistent with what we typically see with autistic children.”
I could tell he wasn’t done.
“But there’s something going on there. The fact that he’s non-verbal at this age. The jumping and flapping of his hands.”
“My report is going to list A. as being on the autism spectrum with a diagnosis of ‘pervasive developmental disorder, not otherwise specified’ (PDD-NOS).” (Truly, this diagnosis is a lot like saying, “We believe something’s probably wrong or off, but we just really don’t know what.”)
I thanked him.
I left with a diagnosis… and the exact same child I had walked in with.
(Next week I’ll tell you about the time I got all feisty with a psychiatrist and also our vist to the neurologist… oh, yes, there’s a lot more to this story…)