Why is it taboo to wish your child wasn’t disabled?
My inbox has been getting absolutely bombarded because saying I wish Charlie didn’t have autism means I wish I had a different son or that he didn’t exist.
No. Charlie without autism would still be Charlie. A happier Charlie.
Most of us accept the need to treat stubborn cases of anxiety, depression, and self-harming with meds. Does that mean we wish these people didn’t exist? Of course not.
Why are the often debilitating symptoms of autism a struggle we’re not allowed to want gone? I’ve seen cases of someone’s autism symptoms merging with their personality, blurring the line between symptom and personality trait. In many instances, it’s unavoidable, because symptoms can be so deep-seated that they can’t be unwoven from the autistic who experiences them. But that’s not always the case. It’s a thought, an idea I still need to think through more and let marinate. I know that some people with autism will take offense to it.
I’ve come to feel that with Charlie, autism is a cage in which he’s forced to live. Occasionally, I get a glimpse inside and experience a moment where I see the boy who’s been stuck there since toddlerhood, unable to connect with so much of the world. For those of us who’d describe a loved one as afflicted with autism, why can’t we ever wish for its effects to be gone? Because the media likes inspo porn? Because one in a thousand autistic people have some insane skill with no downside? The spectrum is broad. Sometimes, autism can be severe. Severe, debilitating, and inescapable. Charlie does not have a mild case. He’s severely disabled.
Charlie without autism would still be Charlie.
Without autism, Charlie would still be the same little boy, but one who could communicate his feelings. He’d still be a little boy who loves playing with water, being wild, and eating candy.
But instead of risking his life by jumping into a pool without knowing how to swim, he would be swimming with his friends.
Maybe instead of running in front of cars, he’d do it on the track, for his team at school.
Maybe instead of only communicating almost solely about what food he wants, he’d share an idea he had. Or a joke. Or he’d ask me something about the world. It’s a sad thing, to raise a child who not once has asked me about the world or about life.
So no, Charlie wouldn’t be a different person without autism. He’d be the same Charlie, without the struggles, the limitations, the cage that parts of him were never allowed to escape and grow freely.
It’s all hypothetical, of course — there’s no cure for autism. Maybe the words “I wish he didn’t have autism” upset you. But I hope you might understand more how severe the struggles can be for many on the spectrum.
My autism isn’t the same as Charlie’s. Charlie’s autism isn’t like the quirky genius on TV’s. But Charlie would still be Charlie without it. Maybe even a happier Charlie. But probably a Charlie who would have a more rich, varied, and fulfilling life — and sometimes, still, I miss that little boy I’ve never met.
Read more blog posts of mine about autism here.