The A Word

I get asked about the A word a lot, from a lot of different people in plenty of varying contexts. Well, it's to be expected--what I do for a living and what I'm good at within that profession deals with the A word all the time, probably more than most if not all other professions.

The A word is, of course, Autism.

I've been asked repeatedly, particularly over the last 12 years, why autism is on the rise in our nation. The statistics from the CDC website say that approximately 1 in 68 children will be diagnosed on the Autism Spectrum, and I get asked "why" about that a lot.

In 2012, my answer would have been: autism is on the rise because doctors are more aware than ever about this disorder, they know what to look for, and the public is equally aware of its existence. It's about information dissemination; it's also about the fact that we are saving more and more preemie kids who go on to have difficulties later, kids who would never have survived 40 years ago. I read a statistic a while back that around 50% of all preemie kids (before 36 weeks) go on to have some form of sensory processing issue--something that may or may not qualify them for being on the Autism spectrum (this is a discussion that is hotly debated in some autism circles right now; for the record, I think they are separate issues, but the DSM disagrees).

Now, in 2017, I have a very different answer. I believe all of the above to be true. But a big, outsized contributor to the 1 in 68 statistic is that in some states (I'm presently living in one), you can get an Autism diagnosis just by going to the right doctor. I refer to this as being able to get an Autism diagnosis-by-drive-thru. (Nurse Cyndy knows EXACTLY what I'm talking about.) I hear it discussed frequently like it's the catch-all diagnosis when it should not be at all--there are kids who just need some time to learn some social skills yet will look you right in the face, notice the minute you leave a room, but at age 3 are just learning how to navigate other people.

In that state I was born in, it takes one calendar year, minimum, to get an Autism diagnosis. The process requires at least two and likely three professionals working together, one of whom is always a pediatrician, and often another is a psychiatrist. There are several reasons for this process. One of them is to guard against the drive-thru phenomenon. Another is that the minute you get that medical diagnosis, you get a lot of benefits that go with it. You get 150 minutes of speech weekly through the school district in a group size of no greater than 2. You get a set amount of hours of respite weekly. You get that Medicaid check.

So, before the state of New York is willing to give up all that dough, a lot of rigorous evaluation must be passed. There are some students in that state who clearly are on the spectrum who still didn't qualify in that evaluation schema. Yet where I live now? Easy peasy. I'm not joking when I say you can go to one single doctor (the "right" one, at least) with a minimum of data collection and have the doctor sign off and say "Yes, your child has autism." (Also, in this state? You can get the diagnosis after age 12. My rage knows no bounds about this. It's a DIAGNOSIS OF CHILDHOOD. Developmentally, childhood ENDS AT 12.)

The dichotomy is chilling. And it tells a lot about why we're seeing the A word on the rise in diagnoses.

And so, when in my current position I hear someone saying, "I think this kid may have [the A word]", I kind of internally grimace. We need to be careful with that word--hopes and fears of parents are built around the idea that they slipped the noose of the A word. It's the fear of every parent these days. So we must be incredibly careful and stop looking at the world in relatively simplistic terms, using the A word as our definition of "other", which I'm seeing with alarming frequency.

A is not "other". The world does not consist of: A (other) and not-A (safer).

We're all a little autistic. I guarantee you know the places where you are, whether it be your minor OCD (or, let's face it, major OCD for some of you reading this), or your inability to deal with change on the spot (guilty as charged), or your inexplicable love for that one video you want to watch over and over and over again (Tom Holland's Lip Sync Battle!!). You also may have communication deficits in certain areas (we all do, and I'm metaphorically looking at my father as I say this). You may have some OT problems (have you ever seen my handwriting? Yet I am a fairly accomplished pianist). You may have some sensory issues (Central Auditory Processing Disorder is incredibly common in the American populace).

You may have a smorgasbord of these (hello!) and yet not be autistic.

I am not autistic. And yet I have a lot in common with those who have the diagnosis (who were diagnoses in a way I would refer to as "organically" or maybe just plain "honestly"). I'm starting to think that I need a tagline: I'm not autistic, but I play one on TV.

Or that could just be Jim Parsons' calling card.

So, gentle readers (all 5 of you), I think it's time we start a discussion on what it means to be on a continuum, all of us, one that explicates humanity. We're all part of it. The A word is part of it. Muscular Dystrophy is part of it. OCD is part of it. Hodgkin's Lymphoma is part of it.

It is what defines our humanity--our imperfections, our foibles, our soft spaces that need protection and understanding.

And no one needs more understanding than our children.