intersubjectivity
“Right now, Timothy meets the criteria for Autism Spectrum Disorder.”
I’m sure she said more after that.
But ever since hearing those words last week, I have been consumed with mentally rewriting my son’s past and his future, at the expense of living in the present with him.
Suddenly, each of his delightful quirks - the things I have loved and shared proudly with family and friends - is now a symptom.
He loves wheels. He turns his toys every which way and studies each switch and button. I can see his gears turning as he figures out how things work.
We call him our little engineer.
But no, apparently that’s not Tim. That’s autism.
He loves cars. When we go to the park, he always makes a beeline for the sidewalk. We sit on the grass instead, and he’s content to sit in my lap and watch the cars drive by for an hour.
But this is, clinically speaking, a lack of interest in playground equipment and in other kids, rather than a personal interest in automobiles.
Whenever Reed or I arrive home after work, he charges whatever doorway we’ve come through, and insists we carry him outside a few steps to survey the area before he’ll come back into the house with us.
He’s curious about the world outside of his neighborhood. He wants to know where we’ve been.
But no - the experts explain that this is repetitive, ritualistic behavior.
All of these eccentricities paint a different picture now - one of a child who is hindered by his illness. My son isn’t just being himself.
Now there are limitations where I had seen personality.
And it makes so much sense, but it makes no sense at all.
* * * * *
I can’t help seeing things differently. As I scramble to piece together a real understanding of the nature of autism - rather than snippets heard from friends, or pop culture stereotypes - my fear and sadness outpaces my hope.
I even caught myself looking at my son with pity.
It’s as if my precious child is locked away somewhere, bound by a brain that limits and compels where it should express. I imagine him huddled away inside, wanting to break free, and being unable to.
I see myself on the outside, desperately wanting to know him for who he is, to connect, all the while doing him no good at all.
And there’s nothing I can do except leverage every resource they offer us - which is more than I imagined, and certainly more than he could have had ten years ago. But there are no guarantees.
Every bit of comfort these days starts with, “Well, at least…” and ends with an explanation of how things could have been worse.
And I’m grateful. I am. My son still connects with people, albeit on his own terms. He still finds ways to communicate his desires, even though he only has a few words. And he’s been diagnosed before age two - which means his chances of growing up and living a full, happy life are pretty damn good.
So why do I feel like they’ve just robbed us of everything?
Because if we had never met those doctors, we could go on telling ourselves that he was just being a toddler. That raging, violent tantrums were par for the course, no matter how inscrutable the cause. That he didn’t feel like talking, and was smart enough to get his needs met without it.
I would have gone on telling myself that I just wasn’t as lovable as my husband, and wondering why I was unworthy of our son’s affection.
And our home life, and his development, would have suffered.
But in our own imaginations, we would have protected him a little longer, and preserved the fantasy that the universe would always cradle him as gently as we have.
And that’s what is truly torn away. It’s the delusion that there is ever an easy path - the naïve hope that our children could grow and thrive in this world without experiencing heartache and setbacks like everyone else.
My son is intelligent, hilarious, and stubborn as hell. At 21 months, he may already be better equipped to face all this than I am.
I can’t wait for him to teach me.
therealljidol week 25: intersubjectivity
I’m sure she said more after that.
But ever since hearing those words last week, I have been consumed with mentally rewriting my son’s past and his future, at the expense of living in the present with him.
Suddenly, each of his delightful quirks - the things I have loved and shared proudly with family and friends - is now a symptom.
He loves wheels. He turns his toys every which way and studies each switch and button. I can see his gears turning as he figures out how things work.
We call him our little engineer.
But no, apparently that’s not Tim. That’s autism.
He loves cars. When we go to the park, he always makes a beeline for the sidewalk. We sit on the grass instead, and he’s content to sit in my lap and watch the cars drive by for an hour.
But this is, clinically speaking, a lack of interest in playground equipment and in other kids, rather than a personal interest in automobiles.
Whenever Reed or I arrive home after work, he charges whatever doorway we’ve come through, and insists we carry him outside a few steps to survey the area before he’ll come back into the house with us.
He’s curious about the world outside of his neighborhood. He wants to know where we’ve been.
But no - the experts explain that this is repetitive, ritualistic behavior.
All of these eccentricities paint a different picture now - one of a child who is hindered by his illness. My son isn’t just being himself.
Now there are limitations where I had seen personality.
And it makes so much sense, but it makes no sense at all.
* * * * *
I can’t help seeing things differently. As I scramble to piece together a real understanding of the nature of autism - rather than snippets heard from friends, or pop culture stereotypes - my fear and sadness outpaces my hope.
I even caught myself looking at my son with pity.
It’s as if my precious child is locked away somewhere, bound by a brain that limits and compels where it should express. I imagine him huddled away inside, wanting to break free, and being unable to.
I see myself on the outside, desperately wanting to know him for who he is, to connect, all the while doing him no good at all.
And there’s nothing I can do except leverage every resource they offer us - which is more than I imagined, and certainly more than he could have had ten years ago. But there are no guarantees.
Every bit of comfort these days starts with, “Well, at least…” and ends with an explanation of how things could have been worse.
And I’m grateful. I am. My son still connects with people, albeit on his own terms. He still finds ways to communicate his desires, even though he only has a few words. And he’s been diagnosed before age two - which means his chances of growing up and living a full, happy life are pretty damn good.
So why do I feel like they’ve just robbed us of everything?
Because if we had never met those doctors, we could go on telling ourselves that he was just being a toddler. That raging, violent tantrums were par for the course, no matter how inscrutable the cause. That he didn’t feel like talking, and was smart enough to get his needs met without it.
I would have gone on telling myself that I just wasn’t as lovable as my husband, and wondering why I was unworthy of our son’s affection.
And our home life, and his development, would have suffered.
But in our own imaginations, we would have protected him a little longer, and preserved the fantasy that the universe would always cradle him as gently as we have.
And that’s what is truly torn away. It’s the delusion that there is ever an easy path - the naïve hope that our children could grow and thrive in this world without experiencing heartache and setbacks like everyone else.
My son is intelligent, hilarious, and stubborn as hell. At 21 months, he may already be better equipped to face all this than I am.
I can’t wait for him to teach me.
therealljidol week 25: intersubjectivity