lmost exactly three years ago, I sat in my living room with a woman sent to evaluate my son for developmental delays. His preschool teacher had recommended it, and she was the first checkpoint. If she judged him
normal typical, life would go on as it had. If she determined there was cause for a more thorough evaluation, well, then, we were one step closer to what I then thought of as the A-word. The word no one wanted to be the first to say.
“So, do you think we need to move on with the in-depth evaluation?” I tried to ask casually.
“Yes, I think that’s probably worthwhile,” she replied.
Or something like that. I wasn’t paying attention after her first syllable came out “y” instead of “n”. It felt like my world was caving in.
But I remember her reply to my next statement vividly. “Well, we’re kind of concerned about people labeling him,” I said.
She didn’t hesitate.
“They already are,” she said. “We want to make sure they’re applying the right label.”
That conversation surfaced today with the news that the CDC has again updated its estimate on autism spectrum disorder prevalance, to one on 50 kids between the ages of 6-17. That compares to a one in 88 estimate released just last year, and 1 in 110 a couple years before that.
On the surface, alarming. And the media will certainly lead with what appears to be that incredible increase, which is based on parental reporting.
But I wonder. Are they applying the right label? Is the right label even available anymore? Late last year the American Psychiatric Association changed the official autism diagnostic criteria. Instead of five separate diagnoses under the umbrella of “the spectrum,” we’ve now got one spectrum that covers everyone from Parenthood’s Max to a nonverbal, routine-fixated, cognitively-deficient individual.
It’s not hard to fit a lot of kids under that big an umbrella. Two percent of the school-age population? Maybe. Greater awareness is certainly a factor, borne out by the fact that milder cases, per the CDC, account for much of the increase. More awareness lessens stigma, too–a good thing.
Other factors may be at play, too. Here in Michigan, insurance companies were mandated to cover autism therapies last year. We’re among the latter half of the states to require this. With funding for therapy now (more) available, maybe parents are more willing to have their kids bear that label.
Three years on, reviewing my sample of one, all I know is that woman was right. She got the label right, and she was right about affixing it. And to the families who will fall into those statistics this year, next year, into the future, let me tell you. Your world may feel like it’s caving in, but it won’t collapse. Yes, you might have to bunker down for a while to get your bearings. You will.
These aren’t just platitudes. I’m paraphrasing what a BTDT parent told me in those first few dark months after the in-depth evaluation affirmed the first assessment. The A-word isn’t the end. It’s the beginning of a whole alphabet of life experiences that you wouldn’t ask for, but won’t want to trade.
An alphabet that includes Challenging and Frustrating and yes, even Miserable sometimes. But also Joy and Pride and Rewarding and Surprising.
And Love. Right smack in the middle, underneath all the layers of other letters. Lots of love.
- The letter A brought to you by Daily Drop Cap.