From an autistic boy: A different perspective on autism and function

TH and I were walking today. We walk together a lot, and by "together," I mean that he is linked to me like my barnacle, hooked to my arm with his arm, adding about 30 extra pounds of downward pull to whichever of my sides he's on. In fact, I have him switch sides so that I don't end up listing permanently, like the Leaning Tower of Pisa, from all the weight.

Today, we were on just such a walk when somehow--gee, can't imagine how--we got on the subject of autism. The context was the difference in ability to use speech among autistic people. TH is aware that he is unlike some other autistic people in that he can talk. A lot. Sometimes with much sense and sudden insight, and other times with what seems like very little of either. He's also aware that he flaps and makes a lot of nonsense noise and grimaces, and we were talking about how everyone with autism can seem so different even if they share little bits and pieces of some of these things, and that's when he said it.

"I think that people who can talk really well and don't flap and don't have a lot of things like that but still have autism are being very 'low autism.'"

"'Low autism?'" I echoed (the irony). "What do you mean by that?"

He explained that he meant just what he said, that they are showing a low level of autism. Continuing, he elaborated his own linear version of the spectrum, in which there is a medium autism and a high autism, and the features of each. High, to him, meant difficulty with talking and a lot of flapping and grimacing and noises. These are his terms, by the way, not mine.

I was struck at the way he didn't place autism in the context of "typical" function. He wasn't talking about "high-functioning autism" and "low-functioning autism." He was talking about how much autism was there, front and center, present and accounted for, disregarding function completely. And then he surprised me even more.

"And you can be in different places on that scale," he said. "When I'm really calm and can talk, I'm on the low-autism end. But when I'm really excited and need to flap and make my noises and faces, I'm more at the medium-autism part." In other words, some days are more autism-y than others. Not less function or more function, just more or less autism.

Furthermore, his scale has no "zero." I know this because he drew it for me when we got home (see image). Its lowest setting is "super low autism." The highest appears to be "out of control with" and lacks increments entirely, a reflection, I think, of how he feels at times like that.

I'd say that this day, given that he was able to articulate all of this, was a low-autism day for him. Although when I suggested that I film him while he explained his idea, it kind of turned into more of a medium-autism day. Autism can be that way, you know?

Thus, my nine-year-old autistic son helped me today, solving a mystery I've puzzled over about why on some occasions, I can say, "Are you ready to do math?" and he'll sit right down and do 10 problems, while other times, he'll only respond, "Eeeeeeeeeeeee!" Now, I've got a lexicon to turn to--and possibly turn on him--when we're having one of those "Eeeeeeeee!" sorts of days.

Autism operates on a sliding scale, according to my autistic son, and not as a measure of function--because you know what? To TH, the function is always there. It's just that sometimes, intense emotions, intensely felt, like excitement or that ever-present anxiety can scale up the autism even to "out of control with." What matters to him is the autism scale, not the function scale, and I found his perspective unique--just like his autism.

What is it about autism?

As some readers here know, I've contributed to an anthology about autism parenting called, Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum (which, by the way, is a finalist in the "Special Needs Memoir category" at about.com; please feel free to log a vote for it). Part of the genesis of the title was that one of the editors recognized how autism intractably drew in her and her family, and she is not alone. My own piece, "String Theory," even uses Newton's Law of Universal Gravitation as a metaphor for how autism and my powerless love for my son keep me in sway.

It's understandable that parents of autistic children would find themselves helplessly in autism's pull. I'd hazard that most parents find that the ineluctible attraction of their children awakens a deep, dark, and sometimes frightening core that slept undisturbed in their pre-parenting salad days. That applies, autism or not. But what is it about autism? Why does it seem to draw in others who are not autistic or not autism parents or even family members. What is its attraction?

I'm aware of several journalists who found themselves in autism's orbit and now seem stuck there, satellites to its gigantic, overwhelming attraction. They focus on many aspects of autism, from highlighting autistic people who do amazing things to deconstructing the myth of the autism-vaccine link to tearing into the false assumptions underlying many biomed treatments. Once it's pulled you in, you can't ever let go again. I can tell they're stuck, digging into this mystery of our brains and behaviors, trying to see behind that curtain.

These accomplished journalists and writers and storytellers feed a public mind that also seems unable to get enough of autism, or at least of worrying about autism. Every fifth health headline includes the word, as though it were an eyeball magnet, a click magician that will pull in anyone, no matter how trivial their real-life connection to autism might be. Maybe it's an expectant mother, wondering throughout her pregnancy if her child will become part of the alleged "epidemic." Maybe it's an anti-vaccine crusader, hoping for confirmation of her own biases. Perhaps it's a parent of a young child with autism, seeking more information about what makes his child tick...or some way to make the autism go away.

But it's not going away, is it? Some days, I get sick of autism simply because it tugs at every aspect of my life. It's been the common force in our family life, our parenting, our relationship, my work, my avocations for so many years that indeed, there are days that I'd like a bit of an autism vacation.

While many autism parents would like a break--desperately need a break--for more fundamental reasons, I'm not looking for a vacation because of my son. In early years with him, yes, things were rough. Rough for him, rough for us. Hard before we knew that he had autism because we just couldn't figure out why he behaved the way he did, what triggered his sobbing, helpless meltdowns, why he wanted to sleep with a boiled egg or an acorn. Why one of his greatest pleasures at a very young age was waking in the morning and finding a clean, smooth avocado seed waiting for him on the kitchen counter. We knew our boy, obviously, because we left him those avocado seeds, but we didn't know what autism was.

Then, specialists flipped on the spectrum switch, and we got sucked in...permanently. There has been much angst and heartache--maybe a lot more than a parent of a neurotypical child would ever understand--but there also have been the most profound realizations, moments of the most innocent beauty, none of which I'd trade away.

And it became an obsession. He's our son. Of course, we're obsessed. Our primary focus is simply his well being, his acceptance of himself, and giving him tools that will help him become and remain functional. Parents with autistic children like ours differ from other autism parents in that we have breathing space: We are obsessed with our son and with autism because we volitionally make it our focus, not because it demands our focus, unceasingly, all hours of the day and night. Yes, autism pulled us in at first, and we had no choice. And yes, our son is autistic, but we're now willing participants in the gyre, not fighting what we encounter there...much. For parents whose children have much more intense autism, they're stuck in that whirlpool of emotion, unpredictability, fear, and the unknown, and it can be a nauseating ride.

Recently, I participated in a conversation on Twitter in which I observed to a parent that we're doing well around here because our son is happy, not experiencing a lot of anxiety. The parent (also of an autistic child) responded, "So?" There were other things this parent wanted, like their child to be able to play with other kids, interact with others, have a conversation. The child is four right now, and I wanted to make promises about development, about how those early mysteries can sometimes fade, that children--even autistic children, yea, verily--grow, develop, move forward. That our own son, at age 4, age 5, 6, 7, gave us no indications of what he'd be capable of doing today, at age 9. We never would have predicted his successes. The parent observed that what I described sounded like "cure." And I knew I couldn't make those promises anyway because...no one can. No one knows what the future of autism is for any single autistic child.

With that "So?" and that "cure," I realized something that maybe others quicker on the uptake than I had already grasped: Autism pulls us in--parents, autistics, journalists, doctors, quacks, snake oil peddlers, Jenny McCarthy--because it is a legendary mystery of enormous proportions, in part because of perspective. It's not a monolithic puzzle to piece together, the way Autism Speaks represents it. It's a complex, unsolvable conundrum, and here's why:

No one sees autism the same way. No parent sees their autistic child in just the same way as another autism parent. No autistic person sees autism in the same way or experiences it in the same way as another autistic person. Investigative journalists can't resist the attraction of a celebrity mystery of this size and depth, one that has scarcely begun to be unveiled. We can't even agree on what a "cure" might look like, or even about wanting one. And possibly the one that baffles me most, given the current realities, we can't even agree on acceptance.

With its Janus-like qualities, showing us only a past we can scarcely understand and wrapping the future in an impenetrable fog, autism has stepped into the pantheon of one of the greatest enigmas of our time. Is it good? Is it bad? Where does it come from? How do we feel about it? Who really has it, and who's just eccentric? What, fundamentally, defines an autistic person? Will the world ever understand autism, and with that, accept it?

The human mind loves a mystery. One look at the New York Times bestselling fiction list will tell you that. What we do not like is when the mystery goes unsolved. That drives us higher apes insane, and it is that--the apparent unsolvability of anything about autism, its resistance to any tidy categorization in any way--that keeps us there, captured, turning and turning in its ever-widening gyre.