Call It What You Will, New York State. A Rose by Any Other Name Is Still Autism

Martin’s autism was diagnosed by the Big Imposing Hospital, and not by the State of New York during his Early Intervention intake.

For the EI intake, Martin was visited by a speech therapist, an occupational therapist, and a child psychologist. (A physical therapist came and evaluated him later.) The psychologist, who reviewed the speech and OT reports and ultimately made the determination that Martin was eligible for services, told me, “It’s autism. You might call it ‘high-functioning autism,’ or, ‘Asperger’s syndrome’.”

Several months later, when I brought Martin to the Big Imposing Hospital’s special department for developmental issues, I told the doctors, “Martin has autism.” The doctors conducted an extensive several-hours-long interview with me, ran Martin through a battery of tests over several visits, collected surveys from Samara and Martin’s classroom teacher, and finally met with me and Adrian together, whereupon they confirmed to us that Martin has autism.

They said they were surprised that the State had provided an autism diagnosis, however. The autism diagnosis was not usually given to a child so young.

I didn’t think much about that comment until one day when I was having a casual conversation with one of Martin’s EI therapists. The therapist—I’ll call her Anna—bemoaned the fact that, under state guidelines, children younger than age five cannot be labeled autistic.

Really? I went and found Martin’s original EI reports, including the comprehensive evaluation from the psychologist. I had never perused the documents thoroughly; I know I should have checked them, but at the time it was just too painful to read page after page describing Martin’s inabilities.

Sure enough, the official diagnosis of the psychologist—who had told me, “It’s autism”—was not autism, but “pervasive developmental delay,” or PDD. I showed the diagnosis to Anna and asked her why she thought it was problematic not to say “autism.”

It’s problematic, Anna opined, because she works with non-verbal, self-stimming, clearly autistic children whose parents say, “We’re not worried. It’s just developmental delay. He’ll catch up.” And she can’t say, “It’s not just a delay. It’s autism. And he probably won’t catch up.”

I understand the state’s policy (and will admit that I am laboring under utter hearsay, having undertaken no investigation to determine whether “no autism before five” in fact represents official policy). “Autism” is a nightmare of a word. More than one of my close friends gasped audibly the first time they heard me apply it to Martin. The Department of Health must not want therapists silly-stringing scary autism vibes over families, especially when an autism diagnosis itself doesn’t always stick.

On the other hand, let’s consider whether this policy doesn’t throw yet another hurdle into the path of recovery. Treating autism, whether biomedically or through traditional behavioral therapy, is ridiculously hard. I know it’s a heckuva lot more than I thought I was signing up for when Adrian and I decided to become parents. You can bet that I would not be spending most of my waking hours on Martin’s recovery regimen if I didn’t somehow feel that the effort is absolutely necessary.

Almost a year ago, when Adrian and I first noticed that somethng about Martin made him different from other kids, I phoned an old friend who works with children in EI. (I’ll tell that story in a later post.) My friend came and spent a day with me and Martin, asking questions and observing him at the playground, at home, and in a class for two-year-olds. That same day, in the afternoon, my friend said, “I know this isn’t easy to hear, but based on what I’ve seen, Martin has autism.”

She said that as a friend, not as an EI pracitioner or a state employee. And it wasn’t easy to hear. Still, I will be forever grateful to my friend for putting the word autism into my head, immediately and up front. I’m not as proactive as I must seem from these blog posts. Not nearly so—for example, ask Adrian about my housekeeping skills, or whether I’m on time for anything, ever. If I’d had ample wiggle room to convince myself that Martin had some issue other than autism, I would’ve done so. I would have been one of those parents saying that he’ll catch up, and letting myself be content with the ample behavioral therapy offered by the state. But I didn’t have wiggle room. The big A was staring me down, right from the get-go. Proactive or not, I don’t get pushed around, and no way was I going to let the big A mess with my kid.

What I worry is that when we don’t call a spade a spade, we let parents off the hook, which doesn’t benefit anyone in the years to come.

5 thoughts on “Call It What You Will, New York State. A Rose by Any Other Name Is Still Autism

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