What Worries Me Most About My Autistic Child Growing Up

by Jeremy Wilson
Jeremy Wilson

Sometimes it feels like we’re raising our boy under a ticking clock.

To some degree, every parent feels that way. We tend to judge ourselves by how quickly our kids reach certain milestones. The points at which our children start to walk, talk, read, etc., tend to set the standard by which we judge their progress, along with our own.

It’s no different when you’re parenting a child with special needs. If anything else, it just tends to add to the pressure, because you become desperate for your child to “catch up.” It’s not so much about them keeping up with their peers. It’s about those little moments of hope and reassurance that your child will be “okay” — that they’re reaching a point where they’re becoming functional in a world that wasn’t designed for them.

Which brings me back to that ticking clock.

My boy is the very definition of “awesome.” He’s funny, sweet, and just about the most loving little man you could ever hope to meet. He continually astounds me with how well he responds to therapy, and blows every preconception and expectation I have away with each new skill he picks up.

That said, he does have some developmental delays. At 6, he’s barely verbal and can at times become overwhelmed and lash out. Not often, but it happens. He’s also not all that great with understanding personal space. He’ll run up to anyone who just happens to catch his attention and lock himself around their leg like a sloth looking for a good branch to nap from (especially if he thinks they’re “pretty”).

These unsuspecting folks get a little (understandably) freaked out at first, but once I apologize for the intrusion and explain the situation, the person involved will usually smile and waive it off. How could they not? He’s an adorable little six year old with curls and a toothy grin that can melt the coldest heart.

He’s not always going to be six, though. Therein lies the problem.

We cut children a lot of slack. We have to, because they come into this world as blank slates and the maturing process is a long and winding one. We tend to shrug off certain behaviors because we just tell ourselves “they’ll grow out of it.” One small problem with that. He’s not going to outgrow being autistic.

It’s not a phase, not a stage, not something “he’s going to get over.” He’s always going to be autistic. Yes, he’s going to continue to develop, and of course we’re going to give him all the support he needs to keep doing so, but his benchmarks aren’t the same as a “neurotypical” child. I’ve no doubt, based on what I’ve seen of him so far, that he’s going to hit the majority of them. It’s not going to be “on schedule,” though. Even when he does, he’s still going to stim. Still break out into random dancing. Still want to come up and give people great big hugs.

People don’t tend to have a problem with that coming from a child. It’s when those behaviors don’t disappear as a teenager and young adult that they start to have a problem. That’s why it sometimes feels like we’re working under a ticking clock. The unfortunate truth is that the world only has so much patience. We only give kids so much time to be children, and then we expect them to grow up, stop playing, and make it on their own.

That’s not how it’s going to work with my child, though. Not with him or so many other children who struggle with developmental delays due to their circumstances. They’re not going to suddenly turn 18, grow up, move out, and get 9 to 5’s. They’ll always need support. Above all else, they’ll always need patience.

Understand that there isn’t going to come a certain age where these kids are suddenly going to “get it all together.” That’s not how it works. It’s not just autistic children who need our patience, love, and support. It’s also autistic adults. There are some behaviors that they are never going to outgrow, or should even have to (well, except for the latching on to pretty people’s legs; I promise, we are working on that!).

So please, keep all this in mind when you see that 14-year-old still playing with age-inappropriate toys, or that 20-year-old who refuses to wear any shirt that doesn’t have Mickey or Minnie on it. Don’t dismiss them because they haven’t been able to stick to the schedule society dictates. They’re not incompetent, they’re not less. Truth to tell, they’re using the clock better than we so-called “adults” do.

Keep playing. Keep learning. Delight in the world around you. Hold onto those things that bring you joy. We’d all be much better off if we could do the same.