News and Knowledge

One summer vacation on Cape Cod, Mass., I made a mistake – although no one got hurt.

My autistic son Ian and I were dressed in our swimsuits when we arrived at Race Point Beach to watch the sunset, a favorite vacation ritual. But nothing prepared us for the waters off Race Point that evening. There was a hurricane 50 miles offshore, and the ocean was choppy, like a black-belt karate champion. With a strong undertow. The water was dotted with a few talking heads, yelling with delight.

In fact, Ian was a good swimmer, but at the time he was fairly young – about eight. For some reason, I thought it was fine for Ian to go swimming. Why? Maybe it was out of my sense of daredevilism, which sometimes overpowered my common sense. Or maybe it was a statement against ableism: Even though Ian had a disability, he would be able to survive or even excel in a churned-up sea. Or, maybe, I was just being stupid?

Here’s what happened: The Atlantic Ocean was in a repeat cycle – waves of two feet would come crashing to the shore, followed by a fierce undertow pulling swimmers out to sea for about six feet, only to be hit by another incoming wave. Repeat, repeat.

I thought it would be fun to place Ian in this cycle – a living buoy subject to the whims of the sea. And, as it turned out, Ian loved it, squealing with delight at every bounce, first out with the undertow, then in with a wave; out, in. After a few minutes, I pulled Ian out of the water at the end of a wave, before the undertow sucked him out again.

In hindsight, I realized: What if the cycle broke while Ian was in the water? What if the undertow kept bringing Ian out to sea, with no wave bringing him crashing back “home?” At the time, I hadn’t thought of the prospect of jumping in a tumbling sea to save my son.

“I trusted my Dad, and I knew that he was there for me,” said Ian. “I thought at the time that it could be dangerous but I still enjoyed it. Personally, now looking back as an adult, I would not change my mind about it.”

Looking back, maybe I would. One of the challenges of being the parent of a disabled child is dealing with how neurotypical people, both children and adults, view disabled people, including autistic people.

When Ian was in third grade, he was asked to read aloud before a second-grade class, as a growth experience for both him and the second-graders. But when Ian started reading, several of the second-graders started laughing at Ian’s speech disfluency, a common challenge for autistic people. Ian got upset, but when the substitute teacher intervened, Ian resumed reading without incident.

“At first I felt embarrassed when those second-graders were laughing at me about my speech,” said Ian, “but then when the teacher calmed me down, it actually felt good to be able to continue to read.”

If I were in that classroom at the time, I wish I could’ve been that reflective. My face would’ve reddened with deep, parental anger. Yes, I know non-disabled, and all, children, can be cruel, but that doesn’t excuse rude behavior. Our neurodiverse family has seen very few adults act that way.

Why do we, as parents of autistic children, get so defensive about our definitions of ability? Shouldn’t we be satisfied at how our children turn out and accept their wonderful, innate gifts?

For me, it took years to reach “acceptance.” It took massive amounts of energy to fight for maximum inclusion during Ian’s school years, and then to reach the realization that we, and he, did all that we could. And to reach a point for me to be happy with the Ian we see and know now.

“I currently enjoy living with my parents. And I am actually good at socializing,” said Ian, “but, in recent years, I have not met peers to socialize with. But I am doing well at navigating my disability and I have not faced any discrimination that I am aware of.”

And yet. Those are his ideals – to live a stress-free life that offers happiness in the long run. We raised Ian with the belief that disability knows no barriers, and with the idea that disability should be accepted. But we, as parents, know we don’t live in an ideal world.

Our world, and our country, still pigeonhole disabled and autistic people. We may no longer put them in institutions, for the most part, but we place them in silos, with stigmas, that prevent disabled people from living a full life connected with the rest of society.

When neurotypical people meet Ian, they know early on he has a disability – they might not know which one. But then, we hope they catch on to his gifts – his intelligence gleaned from an inclusive education, his infectious personality, and his can-do attitude. As parents, we hope that when non-disabled people engage with Ian, they find him as a compelling individual who is not “broken,” but rather part of the great fabric that is our human diversity.

That is our goal: acceptance and growth, in the human condition and its spirit. We, and Ian, think we can “settle for” that. We believe it’s not too much for our neurodiverse family to ask for, and for other families as well.

Arthur R. Henick has practiced journalism, and has been a public relations professional, for 40 years. His son Ian, an autistic person now 34, graduated from a two-year community college in Connecticut and works at an assisted living facility in Florida.