Not Broken

"When I was small, I didn't even know that I was a kid with special needs. How did I find out? By other people telling me that I was different from everyone else, and that this was a problem." — Naoki Higashida, The Reason I Jump

My latest fear: I don't want C to grow up thinking something is wrong with him, that he's broken or damaged. But how? He knows something is different. He's used the words "autism" and "ASD" in reference to himself (and that's okay). He knows his twin lives a different life, goes to a different school. He knows he has special people who come to our home to work with him almost daily. He experiences all the doctors appointments, the evaluations. He's contended with being attached to oxygen equipment 24/7.

So what can I do to prevent him from thinking he's broken or damaged?

I'm not sure, but perhaps it starts by not thinking these things myself.

Not Even Wrong

Shortly after C's diagnosis I began reading everything I could on autism. I focused on possible causes, potential therapies, and what we might do to make things better.

After a while, I needed a break; I wanted to read something that wasn't autism-related. One of the last books I read before C's diagnosis was The Murder of the Century by Paul Collins, a smart and insightful non-fiction account of early 20th century journalism and its handling of a terrible crime.

Since I liked his writing, I decided to look for other books by Collins. Imagine my surprise when I discovered that he'd also written Not Even Wrong: A Father's Journey into the Lost History of Autism. The reviews were glowing, and the back cover description enticing:

Not Even Wrong is a haunting journey into the borderlands of neurology — a meditation on what 'normal' is, and how human genius comes to us in strange and wonderful forms.

The book captivated me; besides being beautifully written and sincere, it's a touching account of a parent's journey shortly before, during, and after receiving an autism diagnosis. More, though, it provides a wonderful and telling history of autism, and paints fascinating portraits of historical figures, infamous and famous, who were likely autists themselves.

Not Even Wrong was the first thing I'd read — or even really experienced — that helped me come to grips with the diagnosis and even begin to embrace it. I'd like to describe this transformation, but I don't think I'd do it justice. Instead, I'll just cite a couple of passages that demonstrate the sorts of insights that, to me, were revelatory:

"When Morgan's diagnosis first came in, all I could think of was: How do I fix him? How do I make him normal again? But there was no again, not really, because there never was a before. He has always been this way: it is who he is. Still, I wanted him to be able to fit in, to not have to feel that he was different. Just some special classes, some special help, I'd figured, and he can get along in the regular school classes, he can be mainstreamed. And I supposed it's a fine thing to fit in, when you can. If he does, that will make things easier. And if he doesn't?..."

And this, on trying to mainstream:

"...and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you are destroying the peg. What if normal school makes you abnormally miserable? And what if growing up into normal society makes you a miserable adult? Is that success? Is that normal? Do you want to be in the mainstream if it's going to drown you?"

And, finally, this:

"Autists are described by others — and by themselves — as aliens among humans. But there's an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of what is missing. A child tugs at his or her parents and whispers, 'Where's that man's arm?' But autism is an ability and a disability; it is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the results."

I've recommended Not Even Wrong to several parents after they've received an autism diagnosis, but I would also recommend it to anyone — friends and family included — with an interest in history, neurology, psychology, autism, and unconditional love. You won't be disappointed.

Duality

C is a boy who, at four, can read full sentences, complex words, and short books; if it's 6:51, he can tell you how many minutes until it's 6:58; he's memorized nearly every street in our neighborhood and can represent them with toy train tracks; he knows all the stops on the Q train from here to Brighton Beach; he knows the color of every single NYC subway line; if you ask him what number J is, he'll say "ten" without hesitation, because that's where J falls in the sequence of letters in the alphabet.

But C is also a boy who cannot take a basic hearing test: the doctor prompts and prods, trying to get him to answer the simplest question ("Do you hear a beep now, C?") but C just giggles and wriggles, or spaces out entirely.* And this is just one example of the myriad tasks that fall into the category of Basic Life Skills that completely elude our boy.

It's this duality, more than anything else, that epitomizes the challenge C faces in life. How can someone so bright in so many ways get by if he cannot learn to master the simplest social interactions and situations? Life independence isn't a matter of having a photographic memory or advanced math, spelling, and geography skills, but of navigating a complex web of human relationships.

For my part, I've mostly given up on trying to describe C's autism using signs and symptoms because, taken out of context, they don't really provide an accurate picture. No, I think the example above does it best: C is a boy who can do some simply amazing things, but utterly struggle with things a child half his age can do without the slightest thought.

Can a child learn to master the basic life skills that seem to be in the realm of instinct alone? I don't know, but I certainly hope so.

...

* After the test, my wife asked C how many beeps he heard during the hearing test. "Fifteen," he replied without the slightest hesitation. "Wow," said the doctor, "that's exactly how many there were!" As usual, C can do it, but he has to do it his own way.

A House I Live In

Wednesday evening C said to me, "I have autism."

He said it flatly, without much ado. But, it was the very first time he'd ever used the term, and certainly the first time he'd ever applied it to himself.

I was a bit surprised, but later my wife and I were discussing it, and a lightbulb went off: she had taken C in to be evaluated for a large-scale autism study, and during the five hours they were there the word 'autism' was bandied about quite often by the clinicians.

We're not trying to hide his autism from C, but we've been referring to it as 'ASD.' We started doing this when it became clear to almost everyone — C included — that he experienced the world a little differently. Giving it a label was a helpful way for us to explain it, and calling it ASD seemed a slightly softer approach for now. The question of when to tell your child they have autism is common and challenging.

The next day, my wife wrote a note to the study lab and asked them if, in the future, they could be a bit more careful about throwing the term around so casually. While we have fully embraced C's autism, we were hoping to explain it to him in bits and pieces over time, as it seemed appropriate.

"It's a house I live in."

As for C, well, when I asked him what he thought autism is, he replied without much hesitation, "It's a house I live in."

I think that's about as apt and beautiful a description as I've ever heard.

C of Tranquility

When things are crowded, bustling and noisy, C will often find a quiet place to relax.

Such was the case this Sunday at a busy playground: C was having a ball running around and generally making merry when I think it got to be a bit much for him. He didn't have a meltdown or otherwise fall apart. Instead, he found a nice soft patch of blue foam flooring (did I mention this was a pretty cool playground?) and chilled out for a few moments. That's when I snapped the photo above...a break from all the black and white on the site for a change.

Once, when we were at an apple farm, C disappeared. We found him a few moments later inside the empty engine compartment of a tractor, his big eyes and wide grin beaming in the dark refuge he'd found for himself.

A few weeks ago we were at a local playground when C was lying on the ground at the bottom of a slide. Kids were going right off the edge over him, oblivious to his presence, and he was happy as a clam lying there on the ground, getting dirty as a chimney sweep, but still being part of the action in his own unique way.

A concerned mom walked over to me and said, "I think something may be wrong with your son."

"No, he's okay. He does that."

"He's been lying there for about 45 minutes. He might be sick."

"No, he's smiling. See? He just likes to lie quietly sometimes."

"Are you sure? I mean, kids are going right off the slide over him. He could get hurt."

"He's fine. I think this is his way of playing with the other kids."

Raised eyebrows. "If you say so."

I do say so.

I no longer see these moments of separation from social action as problematic; I'm coming to appreciate his ability to know his limits and find a little bit of calm.