Love The Unknown

Dear Mr. Baldwin,

I followed a link to your blog and read your post about your son and his walkabout. I have a son about two years younger, and your description of your son is something I could easily have written about mine.

I hate the thought of asking for things from people who are providing them for free, but may I ask you for pointers about what my wife and I will face in the future, given the closeness in age between my son and yours?

Several years ago I stopped trying to predict the trajectory of my son’s life. It was profoundly liberating.

When he was first diagnosed at 18 months we were told was that he had ASD, with no indication as to where on the autistic spectrum he fell.  For a while I assumed he had Asperger’s Syndrome. There was no real reason to believe this, but I considered Asperger’s to be a “better” diagnosis than classic autism, and confirmation bias took care of the rest. Oh, people with autism are sometimes tall? Well my kid is in the 80th percentile for height, so QED.

Year after year I revised my expectations. An 18-month-old child with classic autism is almost indistinguishable from a neurotypical toddler to the untrained eye, but the differences become more apparent at years three and four and five.  Even at six I was trying to “decide” whether he had Asperger’s or Classic Autism, so as to better predict what kind of life he would have as a teen and adult.  

At some point I just gave up. What was the point? Prediction can help you with some decisions (e.g., should we start a college fund?), but by and large this whole process was for my benefit, not his. I wanted to know what to expect, because not knowing made me anxious.

But being wrong all the time was making me more anxious. Worse, it was leaving me disappointed. I hoped my son wouldn’t have classic autism, and was disappointed when he did; I hoped he would have a big verbal breakthrough, and was disappointed each year when it didn’t happen. I wasn’t disappointed in him; I was disappointed that my own dumb expectations hadn’t been met.

Now, when people ask me if my son will one day live independently, or have a job, or find a partner, I answer them honestly: “I don’t know”. I no longer pretend that I have any idea what will happen in the next year or decade.  And I’m so much happier this way.  

Given all that, I’m reluctant to make predictions as to what you will face in the next few years.  And anyway, there doesn’t seem to be any uniformity of development in children with autism.  Some of my son’s peers, who were as non-verbal as he was two years ago, have since kissed the Blarney Stone and are an open spigot of words; others have gotten really, really, really, really into Pokemon or car keys. Kids with autism are as different from one another as they are from neurotypicals, so far as I can tell.

However, there is one prediction I can make with relative certainty: in the next two years your child is going to get big. And it really does make sense to prepare for this.

Somehow this crept up on us.  One day recently he cried “lift you up!” and I obliged, only to discover that I could no longer keep him aloft for more than a minute; another day he gave me a friendly “checking in” squeeze on the arm, and it kind of hurt. Your son is about to transform into a young man, so brace yourself for that.  I started strength training, for instance, just so I can lift my son up for one more year.

Beyond that, though, I have no idea what’s going to happen, with your child or mine. No one does. The secret, I think, is to embrace this fact, and teach yourself to love the unknown.

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    Matthew puts something into words that I’ve been feeling my way towards for a while. For an autism parent early in the...
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