29 Marbles

What would you think if your friend/neighbor/sibling told you that they had left their 9 year old son at a department store in mid-town Manhattan, by himself, because “he had been begging for me to please leave him somewhere, anywhere, and let him try to figure out how to get home on his own”? Would you call Child Protective Services, or would you say “good for you”? Would you ever do something like that?

After you’ve had a chance to think about it for a second, check out the essay Why I Let My 9-Year-Old Ride the Subway Alone by Lenore Skenazy (also available on her new blog, Free Range Kids).

Was I worried? Yes, a tinge. But it didn’t strike me as that daring, either. Isn’t New York as safe now as it was in 1963? It’s not like we’re living in downtown Baghdad.

Anyway, for weeks my boy had been begging for me to please leave him somewhere, anywhere, and let him try to figure out how to get home on his own. So on that sunny Sunday I gave him a subway map, a MetroCard, a $20 bill, and several quarters, just in case he had to make a call.

No, I did not give him a cell phone. Didn’t want to lose it. And no, I didn’t trail him, like a mommy private eye. I trusted him to figure out that he should take the Lexington Avenue subway down, and the 34th Street crosstown bus home. If he couldn’t do that, I trusted him to ask a stranger. And then I even trusted that stranger not to think, “Gee, I was about to catch my train home, but now I think I’ll abduct this adorable child instead.”

Long story short: My son got home, ecstatic with independence.

Long story longer, and analyzed, to boot: Half the people I’ve told this episode to now want to turn me in for child abuse. As if keeping kids under lock and key and helmet and cell phone and nanny and surveillance is the right way to rear kids. It’s not. It’s debilitating — for us and for them.

It’s that last sentence in the excerpt above that really caught my eye. It is no less true for our autistic kids than it is for our non-autistic kids. There are obviously some differences that need to be allowed for, but only by being given independence – true independence – can kids learn how to be independent, and parents learn how to accept that independence.

Sure there are risks, and there will be mistakes and issues along the way. But isn’t that what life is all about?

As you can imagine, there was a huge negative reaction. But she also received some support from her readers. Check out her follow up, America’s Worst Mom, for the details. Security expert Bruce Schneier also weighs-in on his blog, that is worth a read as well.

Remember at the end of the early-80′s movie, War Games, when Matthew Broderick’s character David showed the WOPR how to play tic-tac-toe, and then how the WOPR learned the futility of global thermonuclear war by comparing it to tic-tac-toe?  And how WOPR (or Joshua) then commented on the futility of a game that can not be won (except by not playing), and asked David if he would like to play a “nice game of chess”?

I can’t help wondering if the whole vaccine / autism thing is an exercise in futility for both sides, a game of unwinnable tic-tac-toe, or if it is a game of chess, still in the opening phase with the middle-and end-games left to come.  And if it is a game that can be won, what exactly is it that the victors will win?

Maybe it’s because I’ve been around autism for so long now, but I can’t understand why anyone would find it so surprising that a possible “cause” of autism is a complex interaction of genes. Several recent stories (such as those documented by Kristina Chew and Mike Stanton) have made this point as if it is some new discovery. Granted, it may have only recently been scientifically validated, but this one seems to me to be common sense.

You might as well ask questions like, “What is the cause of introversion? Extroversion? Natural athletic ability?”

I can hear many people saying something along the lines of, “But those ‘conditions’ are normal.” Are they? I mean, in a statistical sense, are they really ‘normal’? I would say no.

If you look at the introvert/extrovert question, I would guess (yes, I’m guessing, no science here) the bell curve of this spectrum would have a few at either end and the rest (you guessed it) within two standard deviations of the mean. Same for athletic abilities.

If we look at autism in this way, as a spectrum across all people (and not just those we currently refer to as autistic), I propose that we might see something similar. On the left side of the bell curve, you would have those that are very non-autistic, the incredibly sociable communicative, etc etc. On the right side, you would have those that are very autistic (what we now simply call autistic). And in the middle, within two standard deviations, would be the vast majority of us showing our mix of autistic and non-autistic traits.

The anecdote The Family Doctor , published by Julie Obradovic on Age of Autism a couple of months back, is a well told story of how she finally succeeds in converting her brother, a pediatrician, to her understanding that vaccines are bad and likely a cause for autism. If you are new to the question of autism and its causes, and come across this story early on in your search for answers, chances are it might be pretty influential.

But something has been bugging me about the story since I first read it. I couldn’t quite put my finger on it, so I haven’t written about it until now. It was a discussion I had with Autistic Bitch From Hell in the comments to my recent post A View From the Middle that made me realize what was so troubling to me about the story.

Here are Obradovic’s brother’s thoughts on autism and an autistic child:

“I tell you, I would rather she got Polio than Autism. At least her mind would be in tact. At least she could talk to me, experience life with me. No offense, but some of the stories you send me about these kids? Well, if they were horses, they’d be put down just to ease their misery. What parent can watch that, or live with that? What child deserves that?”

In other words, an autistic life is not worth living. And an autistic child is not worth parenting. With this mind-set, it is no wonder that they want to find a way to eradicate autism.

I just hope those of you trying to learn more about autism take this attitude into account when you read stories and opinions about vaccines as the cause of autism.

This is kind of a follow-up to my most recent post. In responding to Some Asperger questions from the audience, John Elder Robinson Robison – author of the book Look Me in the Eye and a blog of the same name – takes on the cure question:

If there were ever a cure would you take it, or would you think it was like taking a piece away?At age 50, I am comfortable the way I am and I would not want to take any pieces away. As a teenager, though, life was a lot harder and I’d have had a different answer if you asked me this at age 15. I guess we become more comfortable with ourselves as we get older and hopefully wiser.

If you’ve read the book, you know that Robinson’s Robison’s life was anything but easy. Interesting, no doubt. But not easy, especially in a time when pretty much all kids – autistic or not – were left to sink or swim in the world.

(A side thought for a later post: Could the increased amount of time parents today spend with their kids, compared with previous generations, be a contributing factor to the increase in autism diagnoses?)

A couple of weeks ago, I was asked to give a short talk on autism. Here’s a rough transcript of what I said.

A few years ago, a friend asked me the question: “If someone told you there was a pill you could give your son that would cure his autism overnight, would you give it to him?” Sounds like an easy question, right? (general murmur of agreement from the small audience)

I hadn’t really thought much about it for some time, as it had been nearly ten years since his autism diagnosis, so I answered with a very non-committal, “I don’t know, I guess so.” That evening I gave the question some more serious thought, and was surprised by I learned.

If the child study team that gave us the diagnosis had asked that question right after giving us the diagnosis, when our son was just barely three years old, I would not have hesitated. I would have given him the pill right then and there, no questions asked. (Well, maybe “do you take credit cards?”)

But if you had asked me five or six years later, as my son approached 10, my answer would not have been so quick in coming, or quite so easy to make. At almost 10, he was still autistic, but he was so much more. The more I thought about it, the more I realized that it would be impossible to separate his autism from the rest of him. If we cured the autism, what would be left? Or, I should say, who would be left? Would it be the son I knew and loved, or would it be a “new” child that I would need to get to know all over again? Would I like this new child, this new addition to the family? Would he like who he had become?

Ask me now, when my son is nearly 17, and it would be even harder for me to answer. Although in some ways it would be much easier, because what I’ve realized is that at this point in his life it is not my place to make that decision for him. If someone came to me today and asked that question I would very quickly respond, “Don’t ask me, ask him; it’s his decision to make, not mine.”

This may be a surprising answer to those of you that don’t have experience with autism. But if you are a parent, you know exactly what I’m talking about. When our kids are young, it is up to us to guide them, direct them, and protect them. As they get older, we help them discover who they are and what they want to be. And then we “let go,” we let them leave the nest.

It is the same for out autistic kids, even if the path is a bit longer or rockier.

If you are an autism parent, what are your thoughts on this? If your autistic adult (or nearly adult) son or daughter were offered and accepted a cure, how would you feel? How would you feel if they were offered a cure and declined?

(If this topic sounds familiar, it is because this question – and some of my thoughts on the question – were the subject of one of the earliest posts on this blog.)

In a comment to Lisa Jo Rudy’s brief examination of some of the issues in the autism-vaccine debate, Dadvocate had this to say:

Rather, it is that some, in their zeal to promote public health may be erroneously accepting a level of adverse reaction risk that is too high (and possibly avoidable by reverting to a more conservative schedule)….

The obvious (to me) question from this is, “Given that the current vaccine schedule results in an unacceptably high risk of autism in vaccinated children, what level of risk is acceptable? If the current risk is 1-in-150 (which, I should note is actually the prevalence and not the odds of being autistic), what risk is acceptable? 1-in-500? 1-in-1000? 1-in 10,000? None?”

This question is really for those who believe that vaccines are to blame for autism, and is but one strand in a much more complex thread. Among other things, the risk of individuals becoming autistic would need to be weighed against the risk to the public at large of reducing vaccinations.

At the risk of retreading old ground, exactly where do you think the balancing point would be between protection of individuals from autism and protection of society from communicable diseases? (If you don’t think this is a valid question, by all means let me know. I’m interested in that possibility as well.)