If our son never holds down a job, never drives a car, never finds a way to make money off the obvious (but not exactly commercial) gifts he's been given, and if we and his extended family have to support him his whole life, is that a burden on society, a dead weight on this enormous cargo vessel that's carrying all of us (only some of whom are supplying propulsion)?
Forget about the subjective rewards of having a son like Vance--the intense pleasure of spending time with him and observing the way he interacts with the world; the moments of pride when he surprises you with an insight you didn't know he was capable of making.
Let's talk about his worth in the way an economist might talk about his worth--in measurable beneficial output.
Vance is valuable to society right now because society needs to figure out what autism is and how people get it and how to treat it and perhaps how to prevent it. As much as we appreciate the unique collection of gifts our son has been given, we really wish he didn't have autism, and we would love to help engineer a future when autism doesn't afflict other kids and their families.
Vance is adding to the data pool, and will add to it his whole life. He's very bright and yet his condition is quite serious, so he's an ideal case. The professionals and therapists and teachers who spend time around him are benefitting from what they learn, and while progress seems very slow, how many years do you think it'll really be before we figure this out? More than ten? Really?
My bet on the over-under for ten would be under.
The other day, I was waiting for the sun to go down a bit in Manhattan so I could shoot a sequence with a woman whose back was against a window. Behind her, in the distance, was the entirety of the 59th St. Bridge in all its ghastly Erector-Set glory. But the sun was still glinting off the bridge, making it too bright for my background; blowing out my shot. I knew it wouldn't be long til sunset, so I decided to wait. I walked to the window and tried to gauge the speed of the shadow moving up and across the bridge, trying to figure out how long before shade swallowed it up. I couldn't see any movement with my eyes, although I watched for a good solid minute.
My cell phone rang, I took a call, rooted around my bag for a protein bar (if you get really, really hungry, they actually taste pretty good) and eventually wandered back, maybe ten minutes later. The shadows had moved almost all the way across the bridge, even though they seemed so pokey just a moment ago.
That's how autism will be dissected out of the genome, isolated and cured. It seems achingly, maddeningly slow when you're standing there waiting for it, but when we look back, it'll seem like it happened pretty fast--in a generation or so.
Anyway, having a son with autism has inspired us to fight the school system for more services for our child- and set precedents that will help the many parents coming along behind us with their autistic children. It has inspired us to help raise money for autism research; to blog about tips and techniques for dealing with these remarkable children; to share our experiences in many ways with many families. Vance is the inspiration for all of this. His condition is helping in a small but very real way to produce an eventual full scientific understanding of the condition, and more importantly to engineer a future where autistic people are not regarded as retarded or even disabled, but simply as people with a different collection of gifts and obstacles from most of the rest of us.
Don't underestimate the gifts of an autistic child like our Vance. The gift of never being jealous. The gift of not worrying about whether you get a lot of Christmas presents, or just a few. The gift of not needing to play the little mind games the rest of us play. The gift of not knowing how to lie. or at least not being interested in lying. The gift of being able to immerse yourself in a pleasurable activity so completely that the world makes up a word for your condition that literally means "not hearing."The gift of not caring whether you're popular or have cool clothes. The gift of not wanting to eat food just for pleasure. (If only I had this gift!) The gift of waking up each morning happy--and staying that way....
Not every parent of an autistic child can say their child is the happiest person they've ever been around--I know that, and I grieve for those parents. I want autism eradicated so that more parents don't have to worry so much. The symptoms of an autistic child vary, but the parents always have the same symptom: deeply furrowed brows. Yes, I have 'em too, as upbeat as I am about my son's future....
When we get to a place where we understand autism well and have more choices in how to address it (or perhaps just better ways to accommodate it), Vance will have helped us get there. There are children who will be born many years from now who will have been helped because our son existed and because he inspired those of us who know him to try harder. You might have a hard time assigning a dollar value to that kind of inspiration, but it's a measurable, beneficial contribution.
Of course, even if he didn't have this kind of value, I'd still feel he was the most valuable creature ever born. But it's always nice to have the Freakonomics angle covered too.
