We feel blessed that we were able to go from suspicion of autism to diagnosis and start of therapy in five weeks flat. We have learned that this is not the experience for parents in other states where it may take up to a year just to get diagnosed. When early intervention is the best bet at improving your child’s life, a year’s wait would be a death knell to me. So we rejoice that we live in a state that puts emphasis on autistic kids and their needs.
The question we are asked most often is, “How does one diagnose autism?” I think we have a lot of friends and family that believe a single subjective test was administered and voila! Autism! Nope. There were many, many steps and many, many specialists involved in Nate’s diagnosis. There were so many tests that we’ll break up this story into a three-part saga. Our story is shared, however, with the caveat that this is solely our family’s experience with testing and diagnosis. There are a slew of other tests that may be administered but these are the ones that, for whatever reason, our State uses to diagnose children with autism. And, for goodness sake, if you suspect your child is autistic, please don’t attempt to use our experience to diagnose your child!
Step One: Nate’s 18-month well visit with our pediatrician. If you haven’t been to an infant/toddler well visit, it starts with your kid getting weighed and measured. (Nate hates that. He usually pitches a fit, which results in him getting shortchanged in the height area.) Then everyone says your kid is wicked cute. (Nate’s ok with that but he’s usually still pissed that he was weighed and measured.) Then you get interviewed by your pediatrician who asks the parent(s) a slew of questions about what your kid is able to do. (Nate’s fine playing with toys for the beginning part but is a fidgety mess by the end.) And then he gets a shot. (Nate HATES this.)
For the Q&A part, which lasts about 30-45 minutes, I quickly learned that “yes” is the answer that pediatrician wants to hear. Apparently, I answered “no” way too many times. Our well visit went something like this:
Doctor: My, your baby is cute!
Me: Thanks! I know.
Doctor: Is Nate talking?
Doctor: Not even Mama or Dada?
Doctor: Does Nate point to things?
Me: What do you mean?
Doctor: You know, in a book. If you said, “Nate, where’s the kitty?,” would he point to the kitty?
Me: Oh. Are you kidding me? He doesn’t do that!
Doctor: Does Nate ask for help?
Doctor: If he can’t figure out a toy, does he come to you or Chad and ask for help?
Me. Oh, no. He’s very independent. He sits there and tries to figure it out on his own. If he can’t, he either gets mad or moves on.
Doctor: Ok. How about his body? Does he know any of his body parts?
Me: Really? Um. No. (Pause.) But Nate is really, really cute! Remember when you said he’s cute? I heard you say it. Is there a box for cuteness on that form of yours? If not, would you make one, please?
Based on my spectacular list of “no’s” (which was much longer than what’s listed above), our pediatrician recommended that we contact Birth to Three, a Connecticut state program for kids that provides free testing that determines if your child is developmentally delayed or on the autistic spectrum. (Yippee. That’s fun homework.) To our pediatrician’s credit, I believe he gave Nate one sticker for every “no” that I answered.
I went home and called Birth to Three and the nicest person ever greeted me on the phone—and he was just the person who scheduled appointments! He ran through the 18-month well visit questions again and, after my spectacular list of “no’s,” said we qualified for a visit. (No kidding.) The appointment to determine if Nate was eligible for State services was scheduled for December 15. Seeing as we made this call on November 23, it felt like a very, very, very long wait. Birth to Three also recommended that we schedule a hearing test to rule out deafness, so I did that as well. We got a hearing test scheduled for December 13 at our local children’s hospital.
December 13 finally rolls around and Nate and I head to the fancy hospital for his hearing test. First off, we knew Nate could hear. His head practically swivels off of his neck when he hears the first note of “Curious George.” And if you flush the toilet in the middle of the night, you’re screwed. But there certainly was a chance that his quality of hearing was impaired, which would explain why Nate wasn’t talking yet. After the obligatory insurance paperwork, filled out while juggling Nate, my pocketbook, and my puffy winter coat, we sat ourselves down in the big waiting room. A Disney movie was playing on the television. We took Nate to Disneyworld last year and thought the film might entertain him while we waited. The film was at the beginning, rolling through a series of coming attractions. A beautiful swish of a wand came on the screen and we heard, “Coming Soon in September 1998!” 1998? I looked. It was a VCR player. I was a bit stunned that a top-notch children’s hospital couldn’t spring for a $25 DVD player in the lobby—or a movie that was a bit more modern.
Before I could fully comprehend the age of the video, Nate’s name was called. We toddled off into a hallway and were ushered into a soundproof room, which had one glass wall. Nate sat in my lap and the audiologist sat on the other side of the glass. For about twenty minutes, sounds, including the audiologist’s voice and teevee snow-like sounds, were played at varying levels through speakers on the left and right sides of the room. If Nate looked and/or responded to the sound, he was “rewarded” by a scary, cymbal clapping animal that lit up and did a little dance. (Thankfully, the marching dolls didn’t scare Nate….but they scared me.) At the end of the test, the audiologist came in and said Nate responded just fine for his age group. He can hear. Moving on….
Tune in this week for Part Two: The Attack of the Acronyms!