I'm trying to hold him, but he's squirming. The airport lounge is packed with people, and I can feel all eyes on me: the dad who cannot appease his toddler. Brandy sees me struggling, and comes up with a quick fix. She flips over the stroller. She places Jackson next to it. He begins to spin one of the wheels with his hand. He keeps spinning it. Over and over and over. He's completely absorbed. I look at Brandy quizzically. She shrugs.
That snapshot of my oldest son Jackson appeared in a feature story I wrote for Babytalk roughly two years ago: “Solving the Autism Mystery.” (There may be no other story I’m more proud of. You can read ithere.)
Jackson was 3 years old at the time, and by all accounts—from mother’s intuition to the experts’ definition—he was on the spectrum. The behavioral psychologists saw what we saw, but were hesistant to make an official diagnosis. The brain is still developing. So much can change in six months. So time passed. 4Ts became 5Ts. Birthday candles were lit, blown out, and saved in the kitchen drawer. By age 6, the appointments with the behavioral psychologist were over. The books came off the nightstand. The tears were redirected to other things like sad movies and kindergarten graduations.
That’s the thing with autism: There is no pathology. It’s not in the blood. It doesn’t appear when you shine a penlight into the pupil. Injuries don’t cause it. Biopsies don’t detect it. Medicine can’t fix it. It’s behavior—averted gaze, preoccupation with patterns and repetition, hyper-sensitivity to certain sounds and textures, etc.—that earns the diagnosis.
Earlier this week, some parents picked up the New York Times and discovered their child may no longer have autism. The New York Times reported that the American Psychiatric Association is considering a new definition of autism, which would no longer include many of the children and adults currently diagnosed with Asperger’s Syndrome or Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). In other words, high-functioning people on the spectrum would no longer fit the bill. Read more about it inour Show & Tell blog.
Put away your picket signs. Delete that angry email from your “drafts” folder. There isn’t anything to scream or rant about. How can you blame the experts for changing the definition of something they're still struggling to define? A study highlighted in Pediatrics focused on 61 children aged 14 to 35 months who were on the spectrum. Two years after their initial diagnosis, 20 percent of those children no longer met the ASD criteria, which suggests that either the children are improving or were misdiagnosed from the start. And consider this: Approximately 1 in every 91 children ages 3 to 17 was on the autism spectrum in 2007, according to the American Academy of Pediatrics. Five years earlier, that figure was 1 in 150. Four years before that, it was 1 in 1,000. Is it our increasing awareness that’s making those figures skyrocket? Is something mutating in our DNA? Does it lurk in our cleaning products or groundwater?
For our family, the autism spectrum was like the Alaskan winter. There was no light. All day, all night. On and on and on. It seemed like the darkness would never stop. Then one day, a yolk-hued color broke across the horizon. And it stayed. But we haven't forgotten what the darkness was like.
Have you or anyone you know experienced a radical change like this? What can we do to prevent these change in definitions?