Photo

I first wrote about my son, Finn, shortly after his autism diagnosis: his limp, bony body, the distracted doctors and the unrelenting paperwork. And, of course, our grief. But it wasn’t writing so much as keening, a scrawled lamentation that I wouldn’t have shared with my friends, much less the public. Then in 2012 a friend asked me to write an essay for Money magazine on the unique financial burden of raising an autistic child. My research revealed two facts: First, special-needs children pose enormous, long-term challenges to all but the wealthiest of parents; second, my wife and I were utterly unprepared to meet those challenges.

In May 2013 the article, called “Paying for Finn,” hit the newsstand. “Our kid is nothing like your kid,” it began. “I don’t mean that in an every-child-is-unique-as-a-snowflake way. I mean that my wife, Alysia, and I are pretty sure that Finn hails from some distant, unknown planet. … ‘We are not of his world,’ Alysia and I tell ourselves. ‘And he is not of ours.’ The best we can do is help our alien child negotiate the baffling planet on which he’s found himself.”

At first, the feedback was almost uniformly positive. Then the autism advocate Karla Fisher linked my name in a Facebook post. “Today [there] was a horribly disturbing article in a magazine about the cost of raising a special-needs child,” she wrote.

Ouch. And that was before I read the comments: “That poor child has a spoiled brat for a father.” “It makes me wonder whether the guy ever really wanted children.” “What a whiny, ableist jerk.”

It was easy enough to write off some of these critics. Rallying to my defense, a colleague wrote that he was “sorry to hear that people on the Internet are acting like people on the Internet about this.” It was much harder to ignore the more thoughtful commentary.

“As I was reading your piece, it struck me that you were simply unaware that you were unconsciously echoing certain language that has done tremendous harm to autistic people,” wrote Steve Silberman, a friend and former Wired magazine colleague currently writing a book about the history of autism and the concept of neurodiversity.

In writing the article, I had blithely (stupidly) failed to consider that part of my audience would consist of adults on the autism spectrum. Some of them were angry with me. Many, however, were simply hurt. Not just by me but also by every neurotypical journalist who describes people like Finn as burdens to be mourned, rather than as challenges to be managed, as we manage all the myriad hardships we happily overcome for the sake of our children. Who wants to believe that the people who should love them the most — tenderly and totally and without qualification — would publicly characterize them as damaged, and as a source of pain and misery?

“Our desire not to be rhetorically dehumanized is not a type of hatred or guilt or stone-throwing,” wrote Ibby Anderson-Grace, an autistic scholar and advocate. “It is a natural reaction to hearing the type of person you are, or the type of person your kid is, talked about in ways that seem to suggest not being or counting as a human person. How do you know Finn won’t read that the way you and your wife claw at each other is all his fault because he is not really a person?”

Finn read? The thought had scarcely occurred to me. Not long before, we had been told that Finn, now 6, had the cognitive age of an 11-month-old child. But things have changed since I first wrote about Finn; he used to point to an object he desired, his one concrete method of communication. Now he uses American Sign Language for music and movie and dog and shoe and food and drink and up and help and stop and wait and candy. He is beginning to shake his head for no and nod for yes, and when I look into his eyes I see now that he loves us as fiercely as we love him. He only rarely bites us anymore, or wraps an angry hand around his sister’s hair.

So who knows what’s in store? Reading? Maybe. Or he could be a composer or a writer or an engineer, or simply a human just like the rest of us, full of abilities and disabilities, as well as the welter of emotions that afflict our strange species. He will change and grow, and so will I.

But the debate over whether autism is a disease to be cured or a variation to be celebrated is an abstraction, utterly disconnected to our day-to-day experience. To describe that, I cannot avoid the lexicon of illness.

Last year Finn climbed out his bedroom window, falling two and a half stories, breaking his pelvis and fracturing two vertebrae. He had pushed his stuffed animals out the window, and lacking any understanding of gravity or height, he simply wanted to join them in our yard. I can love Finn for his Finn-ness, but I cannot avoid words like “impaired,” “delayed” and “nonverbal,” or the phrase that particularly irks so many autism advocates, “low functioning.”

Yet language like that angers a vocal subset of autism spectrum disorder adults, and it has opened a schism in a community already starved for resources. To the quirky Intel programmer who recently was given a diagnosis of Asperger’s, treating autism as a disease to be cured must seem like a personal affront, but for people struggling to raise a child incapable of communication, using the toilet or controlling a physically violent temper, seeing autism as pathology isn’t much of a reach.

It’s ironic, and a little tragic, to see an increasingly angry war of words erupt within a community in such desperate need of unity. On that, Ms. Anderson-Grace agrees. “Some of the people who most fervently believe families should have help and support are also disabled,” she notes. “We could be natural allies and help each other mobilize for action. This is a thing I personally want to see happen with great passion, and work for often.”

I would like to think we could all come together for that cause. It comes down to tolerance, as so many debates do. In the same way I hope that the other patrons at our local diner will accept the child doing a headstand in our booth, I hope that autism advocates accept that we require every meager word at our disposal to describe our unique experiences.

Do I want to “cure” my son? It would be like sending E.T. home. And we quite like having him here with us on this foreign planet, the culture clash notwithstanding. The plain truth is that raising any child — “to decide forever to have your heart go walking around outside your body,” as the writer Elizabeth Stone puts it — is indescribable. Let us accept words for the blunt, imperfect tools that they are.

Adapted from Dads of Disability:, Stories for, by, and about fathers of children who experience disability (and the women who love them), edited by Gary Dietz.