A few years ago Autism Daddy shook things up a little with article calling “BULLSH**” on parents who say of their autistic child “I wouldn’t change him for the world!” Please read through some of the comments for full impact. He makes a great point: of course you’d change him. It’s why you tried the diets, why you tried vitamin supplements, why you get him into as much therapy as he can reasonably handle, and why you have tried every method of discipline possible to try to make him more normal. Because normal’s definitely easier, and it’s what you want. You’d give almost any amount of money to reduce his difficult autistic traits or make them go away entirely.
I land very hard on both sides of this issue. Let me explain.
Okay, that will take too long, so let me sum up.
“Changing your child” isn’t a binary proposition as it’s been made out to be by folks on either side of the issue. I want to change Dmitry’s destructiveness, his language ability, and his attention span. I do not want to change his weirdo obsession with mundane things like water, brushes and forks, or his hyposensitivity that drives him to spin in a circle for hours and flap like a sparrow lifting a coconut, because I enjoy those things about him. I love that he’s never happier than when hanging upside down with a brush in his hand. I credit his withdrawn, internal autism wonderland for his incredible benevolence, and his roll-with-the-punches attitude (another autism mold-breaker). That hyposensitivity makes him crave hugs, squeezes, rubs, thumps, pats, hits and twirls. The detachment so common with autism, combined with that hyposensitivity, has entirely removed aggression from his personality. Very few things hurt him, and that contact gives him pleasure. The detachment means he doesn’t care what anyone thinks, and so he loves on people without a second thought.
So no, I don’t rage against autism. But I also am well-aware of how “good” I have it. It’s not easy with his ADHD-level energy and focus combined with his joy for spilling, destruction, throwing the biggest thing he can find down the stairs, and generally thriving in mayhem, it’s just that Dmitry has so many qualities to make up for it.
Autism is a “Pervasive Developmental Disorder”. Pervasive. It permeates every cell in his body. Every thought he has, every movement he makes, every sound he hears, every giggle, every brush he eats: his entire being is filtered through autism.
So I’m torn. Dmitry’s derpy little brain is broken. I have received criticism before, even from close friends and family, for calling autism a disorder, a sickness, and a disease. But it is. I’m not retracting that. My child has serious developmental delays and the odds are against him ever becoming an independent contributor to civilization. Many symptoms of autism are unquestionably harmful to the child and to his family.
But on the other hand, I don’t know if I’ll ever meet another child as sweet, unique, and hilarious as my boy. Would I fix the language barrier, do away with the non-verbal, so he could tell me what he wants instead of screaming until I found it? Sure. Would I make his focus last longer than an eighth of a second on a good day? Yep. I’d change him in a flash.
But would I trade in my entire son for the non-autistic model?
Not for the world.