Roads Not Taken: Lessons in Autism, Inclusion, and Life

Most of us tend to interpret the world in ways that validate the choices we’ve made and confirm our rightness.

People on differing sides of an issue — or an idea — will often interpret the same event, the same circumstances, or the same fact through the prism of their pre-existing opinions and thus draw opposing, incompatible, and self-comforting conclusions.

Moreover, in any given circumstance, if you yourself had made a different choice or taken a different “side,” you likely would filter the available evidence or select different evidence in a way that affirms your own correctness.

This bias is very common and very strong among human beings. And awareness of the bias does surprisingly little to diminish it.

Pardon this paragraph, which I type knowing how ludicrous and problematic some of the thoughts and language in it are: Nicholas is in the middle of the autism spectrum. His autism impacts his interactions with the neurotypical world in significant ways. He does not “pass” easily, or really at all. He would if he could, I suppose — despite every effort, he hasn’t adopted my value system here and still loathes being “different” — but his theory-of-mind deficits, to use the conventional phrase, mean he doesn’t really even know how.

Years ago, and then repeatedly over the years, I have made the choice to advocate for Nicholas’ education to be as mainstreamed — as inclusion-based — as possible.

I believe that was the right choice for Nicholas. He has made extraordinary progress in so many ways, some completely visible and some harder for people less familiar with him to discern, in academics and, more importantly to me, in socialization and simply being able to function in group and public contexts.

I also believe that was the right choice for his peers, who have learned so much each year about understanding human differences, as well as kindness and empathy. Some have become Nicholas’ friends.

But, of course, if I had made a different choice — to place Nicholas more exclusively in resource or intensive-intervention settings — I’d likely be validating that decision equally and explaining in this very blog post why it was the right one for Nicholas.

The choice I did make has meant Nicholas often has had to work very hard. In elementary school I sometimes told him he had to work twice as hard as his peers in effort and time to keep up; that his autism helped him be really good at some things and also meant he had to work harder at others, including much of his schoolwork.

It was true then, and it’s true now. And most of his neurotypical peers are working pretty hard now. So, it can be tough for him.

At times he seems to be falling further behind in what has been a challenging school year.

Nicholas doesn’t learn incrementally. He submerges in bits of information — puzzle pieces, if you will — and at some point in the work they tether together into coherency and ah-ha! and he experiences a sea change in understanding.

Immersion, immersion, immersion, fragments, puzzle pieces, work, work, ah-ha.

That’s an unusual learning style mostly at odds with today’s mainstream pedagogical models. Neurotypical scaffolding tends not to work for him.

Sometimes Nicholas’ understanding — when he has an ah-ha — is transparent. Nicholas suddenly answers a math sheet of 20 problems all correctly and completely independently after having shown no ability for it whatsoever until right then. That’s a yay moment, and he happily soaks in the praise. Even then, though, doing it at home doesn’t always translate to doing it at school.

Sometimes it’s not obvious even to me what Nicholas is learning. We play a nightly game of Bananagrams that is our own variation: we lay out a five-by-five block of 25 tiles and find words. Nicholas usually leads with a long word and not infrequently it’s a word I had no idea he knew. His ability at this game, I say with some confidence and in all seriousness, is 99th percentile. He’s that good. Meanwhile, though, he’s struggling with understanding and expression of understanding on just about every test coming his way in school this year, even on the simplest things.

It’s somewhat hard for me to understand that sometimes. It’s very hard for some of the folks he’s working with at school to understand that.

Revelation, rather than incrementalism, was very much how Nicholas learned to swim. Swimming didn’t make sense to Nicholas at all. He was over his head, clinging to the side, not knowing what to do. But he watched others, mimicked parts of movements, tried beyond all reason, and taught himself to swim in a way that was and is unlike anyone else’s technique and really makes no sense at all. Immersion, immersion, immersion, fragments, puzzle pieces, work, work, ah-ha.

More than that, Nicholas has a codiagnosis of obsessive compulsive disorder along with his autism, and he has carried with him a fierce lifelong OCD fear of water. He would not get near a pool for most of his life. But one day, just a few years back now, we were at the periphery of the Memorial Day barbecue, and he was watching, watching, watching.

So many people having fun in the pool. So many children having fun in the pool.

He did not want to miss out.

He did not want to be different.

He stood up and walked over and right into the pool. He was fully dressed.

He just decided he was going to do this thing. He did not want to take lessons, either. It took him two to three years of determined effort to teach himself how to swim. And he’s really quite a good swimmer now, even though certain parts of swimming still cause him sensory challenges.

That was brave. But Nicholas is incredibly brave every day of his life. What order of bravery is needed to live in a world that makes no sense — that is loud and chaotic, unstructured and intrusive, ruleless (and often ruthless) and random?

Much more bravery than I have myself. He is my hero, even as I remain his parent.

Juggling, too: I can do a poor man’s three-ball cascade, and I showed Nicholas. He so wanted to do it, then, that the whole thing almost seemed cruel on my part. How would this boy who had such trouble tracking movement all his life — for years he’d run after a rolling ball and stop by its side just to see it elude him again; I learned never to throw him a ball at head level but only so it would instead hit him in the gut when he missed it — master this degree of hand-eye coordination and skill, something most people never come close to “getting” no matter how hard they try?

Immersion, immersion, immersion, fragments, puzzle pieces, work, work, ah-ha. Here’s a little video of Nicholas juggling at a school talent show at the end of 6th grade in spring 2013 (and, again, the bravery, performing in front of a large group of people when, for much of his life, he could not stand to be in or near a crowd).

To immerse Nicholas academically at this point means lots of extra work. The pedagogical model currently in style in math here and nationally is to teach multiple ways of doing things to improve quality and depth of understanding. I’m highly critical of this model for neurotypical children; for Nicholas, it’s nonfunctioning. Competing ways of doing something? Teach him the best way and that alone, and he can master it with immersion. Otherwise it’s just confusion and chaos and guessing at what you want from him.

If he makes the right guess, maybe you’ll leave him alone.

It’s as true in the “Common Core” in English — what’s now called Language Arts, which is a pretty high-fallutin’ term — as in math. See this rather-too-kind article in the journal TEACHING Exceptional Children about how deficits in theory of mind and central coherence (as well as executive function, but I see this as more easily assisted in an academic environment with proper structural supports) make the relatively new CCSS standards challenging for autistic children, specifically.

Let’s be less politically correct and more honest: these standards will move growing numbers of students out of inclusion and into intensive intervention.

As the diagnosed autistic population continues to expand, this movement is increasingly consequential.

We’ll set aside for another blog post the absence of meaningful evidence that the state and national programs and standards rolling out over the past 20 years (NCLB, RTTT, CCSS, etc.) have improved or are improving overall educational outcomes in the United States even for neurotypical students, as their unintended consequences for IEP students become increasingly punitive. And for now we’ll ignore the related large class lawsuit begging to be filed, too. But let me just cite a single idea from the current (November 9th, 2013) issue of The Economist that sums up what I believe is a necessary (although not by itself sufficient) condition for the education system in the United States to improve significantly, no matter how much noise we make about other things that distract us all from the underlying reality, the societal priorities that need to be reordered regarding our children and our future, and the work that then will then still need to be done: “The countries where pupils do best, such as Singapore, Finland, and South Korea, draw all their teachers from the top third of the academic pool.”

We in the United States are not close to doing that or even agreeing to the value of it.

In the meantime, though, children are growing up and being educated right now. And, in the meantime, I have my son and choices to be made in this present, much as I’d like the institutional circumstances to be transformed.

We are faced again with the inclusion versus intensive intervention conundrum. I believe in the choices I’ve made thus far, but I recognize the competing values here and the potential for differing outcomes for Nicholas, most importantly to me, and also for his peers in each setting.

My son’s “transition to adulthood,” a formal part of the educational process as well as a life process, begins soon, when he turns 14. He is 13. The decisions we make now will impact his life path and the turns then available to him further down that path.

Which choice is kind, and which choice is cruel? Which is better for him now, and which prepares him better for a life we hope intersects in a meaningful way, if he chooses, with the neurotypical world all around him? What if those answers aren’t the same?

When does well-being in the big picture outweigh well-being in the moment? And when doesn’t it?

Sometimes it’s hard to allow for that kind of complexity and sophistication in decision-making. But, as parents, we do our best to meet that challenge, and then trust our children to live their lives as best they can. We hope we can assess all that honestly while knowing, as I pointed out at the beginning of the post, and as I tried to indicate regarding the educational system itself and its changes being measured by educators and national and state governments, we’ll probably be overly generous in our self-assessment.

About this time last year Nicholas was seen by a psychologist — an autism specialist Nicholas has known in another professional setting since he was 6 years old — who did some testing, including an IQ test.

Many children on the spectrum underperform on standardized tests, but when the psychologist delivered the results to me with a startling low IQ number, he said to me, in the context of school, “Nicholas is performing well above his cognitive level.”

I’m still deciding on a day to day basis whether that’s a good or bad thing — or if it’s something more nuanced somewhere in-between.

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