Sunday, October 2, 2011

When it comes to development differences, environment dictates when it's a disability


The other day, the governor of Texas, Rick Perry, commented that attention-deficit disorder should be a "paddleable offense." He compares ADD/ADHD to having "ants in the pants," and says that some kids don't need medications but instead require attention and "tough love." My translation of his meaning of "tough love" is, well, paddling.

I recently tweeted that between my son with autism and my son with ADHD, my ADHD child currently has the greater disability. That may sound odd. But my autistic son is someone who is comfortable in his own skin. He's so comfortable with his autism that recently, in an email to another autistic child, he offered these words of encouragement:
We must learn to love and accept ourselves. It doesn't matter if we're different. Being different is hard at times, but being different is a gift, too. It makes you unique in a good way. I'm not perfect but nobody is, and I'm a good person.
In other words, TH is doing great. Right now, comparatively speaking, our middle son Dubya suffers more negative effects from his ADHD than TH does from his autism. They're such different disabilities. In our current environment of homeschooling with one day a week with a small group of other kids, TH is flourishing. We're all used to his autistic behaviors. His interests fit in with our family environment because they're about nature, trees, the outdoors. These manifestations of his autism are a good fit for our family environment, and while he definitely attracts attention when we're out, it's nothing deleterious to his happiness or function. His autism right now is a difference, but it's not a disability.

Might that change as the environment does? Yes, it might. That'd be our society's version of natural selection.

And in that context, Dubya's got more deficits, ones that add up to disability for him. In a restaurant, he ends up under the table, sliding like an invertebrate to the floor, all the while not hearing our whispered admonishments to get back in his seat. In movie theaters, he calls out, impulsively and loudly, talking to the screen as if he were all alone. If I softly touch his arm to stop it, the gesture doesn't register. If I speak in his ear to ask him to stop, his impulse control is so limited, he literally cannot stop and does it again within seconds. After years and years of reminders, he's still unable to detect when another conversation is in progress and will just interrupt without regard, emerging from his life on Planet Dubya and barging right in, unaware of anything that's been going on previously.

If you call his name to get his attention, the focal deficit there is so powerful that he will actually look at you, but instantly forget why he did so, and then look away again, back to what he was doing. He also has delayed auditory processing, so he appears to be ignoring what people say to him when in reality, he's taking so much longer to process it that you can actually count the seconds and see when it finally registers. He is almost incapable of being still--at all times, some part of his body is in motion. I homeschool him now and have timed his attentional periods. I've found that his attention drifts within a matter of seconds, several times within a minute. Learning in a classic classroom setting could be almost impossible with this kind of deficit.

There are few environments in which these behaviors--impulse control, attention deficits, constant movement, auditory processing delay--are beneficial but many in which they are disabling. In a regular classroom, his experiences have varied depending on how understanding his teacher was. One teacher consistently publicly humiliated him, expelling him with every transgression into a busy hallway where all the other students and parent volunteers and teachers could see him and know why he was there. That year, his tics went out of control. His obsessions and compulsions became so bad, so overwhelming, and so troubling that we took him to therapy sessions for months. His difference had crossed over into disability at that point. We didn't realize the real root of these manifestations until school ended and suddenly, the tics and intrusive thoughts and constant confessions and obsessions essentially ceased. No, Rick Perry, paddling isn't going to benefit this child in any way.

But he had another teacher the next year who understood his disability so well that her accommodations made him able to learn and diminished the magnitude of his atypicality to a difference. It was in the environment that she created that he finally latched onto a love of reading, able to set aside the shame and anxiety that clouded his mind throughout his previous school year, opening the way to knowledge acquisition. He still had his moments in her class. He always will have his moments. But in that environment, his deficits became neutral while his talents--which are multiple and seated in his astonishing creativity--had a chance to shine. Again, environment made all the difference.

Currently, he's with a teacher one day a week outside of homeschool whose understanding of ADHD may not be of the latest vintage. She's not like the teachers I remember from my childhood in the '70s, the ones who took children like my son, mostly boys, and publicly embarrassed and humiliated them. These boys would be isolated from the group or seated in the front of the class alone, or, like my son was 40 years later, sent into the hallway to crumple in ineffectual humiliation and shame as public as a criminal in stocks in the square. The current teacher has kind intentions, and we've met with her to describe a few tactics--stolen from last year's classroom environment--that may help her and him in the current environment so that his differences don't disable him or her teaching effectiveness.

The isolating and humiliation tactics have probably never worked on a child with this disorder, which, I'll add, is far more significant than "boys will be boys" or "ants in the pants." It's a real deficit, one that I've timed. It often goes hand in hand with tics and OCD, and yep, that's what our Dubya has. I've taught a lot of boys. I've taught rowdy boys who, at the end of the day, just want to crash into each other. And I've taught the boys with ADHD. They are not the same.

There is a huge difference between "boys being boys" and a boy with ADHD. One is correctable with words, consequences. The other interferes with daily quality of life in many settings, which means that it meets the definition of pathology, of disability. And I've taught with teachers who viscerally detested these children because of the energy it took to manage them with understanding and grace rather than with anger and abuse. Teachers who would actually talk openly about how they were "going to get" specific boys with this disability. It was painful to see and understand that. And these experiences came before I even had children. When the world sees you that way because of Who You Are, the world is what makes you disabled.

My son's attention deficits and inability to control impulses translate into negatives for him in many modern-day environments. It may be that in some previous setting not associated with our indoor-oriented culture, ADHD was a benefit. At least one study has found a potential link between success in a nomadic lifestyle and a gene variant associated with ADHD. Recent results from another study suggest that playing in "green" surroundings softens the manifestations of ADHD. These findings always lead me to thinking about E.M. Forster and his fundamental belief in shaking off constraints and being Who You Are.

Is there an environment in which my son's being Who He Is might be positive for him, a benefit instead of a liability? Like many people with ADHD, he is an extraordinarily creative child--we're talking off-the charts creative--the picture at the top is one he did at age 6. His best environment right now is in a room full of Lego blocks, and during his many breaks on homeschool days, I know he's happy because I hear the familiar sound of his digging through the blocks, seeking that perfect, tiny piece of just the right color and shape. He builds perfectly symmetrical, complex Lego creations of his own making, with functioning parts and always with a backstory. He's written and illustrated an epic comic book that runs to more than 100 pages. He's highly gifted, a creative problem solver, a child with a brain light years ahead of his emotional and behavioral maturity. These talents, these skills, must someday find an environment in which their benefits outweigh what are deficits in today's society.

Because of that society, because we can't send him out to live in the woods, As He Is, we have to at least protect his spirit. This protection is important because children with ADHD are at greater risk for depression and suicide. Who wouldn't be after days spent listening to people correct you constantly? Who wouldn't be from a childhood of the shame and misery of wanting so desperately to be a "good" person but getting messages left and right that you aren't? Who wouldn't be after years of teachers who publicly humiliate them, isolate them from their peers, yell at them, purposely embarrass them?

Paddling a child with ADHD or giving them class "tough love" in the form of physical abuse does absolutely nothing to address the deficits these children have. Each stroke of that paddle, each public humiliation just crushes an already fragile spirit, one that suffers a conflicting duality between wanting so badly to be good while constantly feeling like a total failure at it. Given that research has established genes linked to ADHD and brain imaging studies show clear differences in brain function, it is the height of irresponsibility to suggest that these kids could control themselves if they wanted to or be controlled by physical abuse. That simply isn't the case.

An environment like the one Rick Perry describes is not the kind of environment in which my son with ADHD will thrive. It's exactly the kind of environment in which his traits will be deficits, in which, in evolutionary terms, they will be non-adaptive. He will not be selected in such an environment, by himself or others, to thrive and, yes, survive. Instead, as we already know, he will become more anxious, more unable to control not only his impulses but his obsessive thoughts and tics and OCD behaviors. Not only will he continue to be different, but he will become increasingly disabled.

We already know the environment that allows our son with ADHD to flourish. And when I say "flourish," I don't refer only to extrinsics like good grades or fewer reports of misbehaviors. I mean his own internal measure of himself as a good person. Words matter. Consequences and how fit they are for a specific child matter, too. They can determine the distinction between an environment in which one is merely different and one in which a person is disabled from functioning.

That teacher I told you about, the one who made accommodations both intuitive and experiential for our boy, who eased his anxiety about himself enough to let him grow? The last day of school, the last time she saw him, she hugged him, and she said, "Ah, Dubya. I love you so much." Months later, as we were driving in the car, somewhere, as we always seem to be doing, he brought that up. He quoted it to me, described the hug, and said, quietly, "No teacher has ever said that to me before. It made me feel so good." That's the kind if environment for which my son with ADHD is a fit, the one in which his ADHD is only a difference, rather than a disability.