Every autism journey is unique. That’s great – and terrifying

All typical children are alike. Each atypical child is atypical in their own way.

BY STEVE FRIESS

IN BORROWING TOLSTOY , I hope I’m not showing myself as a pretentious egghead. It’s just that while I never understood the opening line of “Anna Karenina” as it pertained to families, I totally get it as it pertains to kids who are neurodivergent and the parents who love them.

My son, Nevada, turns 5 soon. He’s very bright, usually very happy, has a lovely sense of humor and can be very affectionate. He also probably can’t tell you what he had for lunch today – not because of his speech delay, which is improving all the time, but because, well, he just can’t. Or he won’t. It’s hard to tell which.

This is probably not a kid who would have been classified as autistic before the widespread adoption of the spectrum. Rather, he probably would have been labeled as disobedient and occasionally violent – and we would have been regarded as (and felt like) terrible parents. I can see where his outbursts, his refusal to listen, his intense aversions to things like sitting still or leaving a favored activity or entering the bathroom would have been seen as disciplinary problems.

We would have been receiving unsolicited advice from family, friends and probably strangers at Kroger and the neighborhood pool about how we need to crack down and stop being so lenient.

Clearly, then, the spectrum is a wonderful, important construct. It provides context for a kid like ours whose capabilities go well beyond what autism meant even 25 years ago. It gives families like us hope and access to strategies, therapies and interventions. It relieves the guilty conscience of parents who feel like failures for not being able to teach a kid to button his pants or suck on a straw.

All that said, because autism is such a broad spectrum, it maroons each of us on our own unique island. The first thing you want to know when you receive any medical diagnosis is how other people have fared, what other people have done. When you learn you have cancer, you find others who have had it at your stage, you read up on treatments and outcomes, you lean on others who have been through it for moral support and encouragement.

That’s so much harder with an autism diagnosis. What is the best “treatment”? Nobody really knows and/or it depends on the circumstance. What are the odds of “beating” it? You don’t “beat” it so much as learn how to cope, how to create the space that enables the person with autism to fulfill their potential.

These days, you probably go to social media. You join a group. And you mentally compare whatever you can glean about each kid to yours. This one won’t eat anything? My kid has a great palette and appetite. That one loses his mind if the day’s routine is disrupted? My kid loves variety. This child got his diagnosis at 9? Mine has been receiving interventions since he was 30 months.

And on and on it goes. You break your kid’s autism down into component parts and see who has biting issues, potty issues, speech issues, attention issues. The permutations are endless – and that doesn’t even address the fact that you also want insight from parents with kids the same age (and sometimes gender) as yours.

The question a parent with a child on the spectrum wants to know the answer to is how their kid will be as adults. There are loads of examples for that, too, which means you’re basically choosing your own adventure based on your access to services, your innate optimism or pessimism, and what you know about your kid.

The spectrum makes a lot of things possible. It draws in a larger population which, in turn, creates political pressure to make the world more autism-friendly and social pressure to be kinder, more patient, more understanding.

I feel lucky to be contending with our son’s challenges in this era. I wouldn’t want to be doing it when I had to fight for legal rights and services or before so many scientists have done so much helpful research.

But often enough, even with the benefit of all that knowledge and progress, we still feel alone.