Thursday, April 7, 2011

All I Have to Say

Kristen Spina

I've spent the first few days of Autism Awareness month blogging about nothing important. I should say, deliberately blogging about nothing important. The problem I'm having is that with all this focused attention, all eyes on us, so to speak, I'm having a hard time putting words to what I feel, what I think about autism in our lives.

One of the things I know is that I can't speak for anyone other than myself. I can't speak for my son, for my husband, for our families or friends, or for any of you who walk a similar path. As I read other blogs and listen to some of what the media is saying, I am overwhelmed by the diversity of thought and opinion. The polar extremes of the spectrum itself.

I am reminded that the inherent challenges of autism have to do with perception -- from the standpoint of those who are diagnosed as they struggle to navigate the world as they see it, and from the perspective of the rest of us as we bang heads over what autism is and its underlying causes. The varying points of view are staggering, from cause to remediation to therapy to education. Vaccines or no vaccines. The environment. Genetics. Epidemic -- yes or no?

And the definition itself. What is autism? For months I have told myself and anyone willing to listen that autism is not one thing. But what does that really mean? It's behavioral, yes, but there's more to it than that. A lot more.

There isn't a piece of my son's world that isn't colored by this in some way -- it is, as his diagnosis attests, pervasive. And yet -- most of the time, it sounds worse than it is. Most of the time, I can say with conviction, life is good.

I sometimes feel that my son's greatest challenge will be getting through school. But do I really think, as I've often said, that once he's an adult, once he's out there in the world at large, it will be easier for him? So much of what I've read this week points out how difficult it is for autistic adults. How the lack of support and services and jobs creates a new level of challenges for those who have crossed that imaginary threshold, leaving teachers and therapists and the educational system behind.

Is that how it will be for my son? Or will he grow up to lead a relatively predictable life as a somewhat eccentric and slightly out of sync adult? After all, isn't everyone just a little bit weird? Aren't we more accepting of differences as adults than we are as children? Maybe. But probably not.

A friend called the other day to say in a very tongue-in-cheek sort of way, "Autism is the new fashion trend. Everyone is talking about it." And it's true. They are. It's just me who doesn't know what to say. I'm sitting here on the fence wondering which side to come down on. I can't find the words to express what this means to me, in a very personal, very real, very down-to-earth way.

There's no doubt that my son's diagnosis is on the spectrum. But lately, I feel a little disingenuous when I say, "My son has autism." Why? Because, god help me when I say this, things are going very well. We're in a good groove. He's happy. He's working hard. He's remediating all over the damn place. And so I'm back to thinking, "Hmmm. Maybe it does just go away..." But I know it doesn't. Still, how to explain the inconsistencies? The moments of absolute connection?

I wonder, is he a child who has autism? Or is he a child who has differences? Is there a distinction between the two? Does it matter? How can the pediatrician call it "a slow start" when the neurologist defines it as "PDD-NOS"? Why do educators insist on calling it "a behavioral issue" and "a learning disability", while the OTs call it "sensory processing disorder" and the therapists call it everything from dyspraxia to hypotonia? Clearly, this isn't the kind of thing you can put in a box and tie with a ribbon. But why would you want to?

And what does awareness mean, anyway? What are we supposed to be building awareness of? Because there's too much of it, too many pieces, too many stories to shove into a month's worth of days. Shouldn't this be about changing the way we think, changing our fundamental approach to respect and acceptance and differences? What is the goal, here? Is it enough to say the words and wear the ribbons and listen to the news? Not really.

I know, one step at a time. Awareness fosters understanding -- in a perfect world. But our world is far from perfect, and I can't help but think about all the fear and the misinformation and the stigma and the despair that surrounds this word that we can't really define, that means so many different things to so many different people. How do we come together, lift each other up, and accept the inconsistencies? How do we embrace our differences? And when will we stop trying to shove people into tiny little boxes, and instead give them the support they need and room to grow?

These are the questions I am struggling with a few days into Autism Awareness month. And I don't have any answers. I don't have any wisdom or theories or advice to share.

I simply have this boy. This funny, fantastic, exasperating, infuriating, wonderful, wild, quirky, sweet and fabulous boy.


This essay was originally published on