Dude, That’s So Intense

iPad Boy

Isn’t this a cool picture? That’s our eight-year-old boy playing Fruit Ninja on the iPad. This is quite a common sight in our home. It’s just one of many contortions this kid does. He’ll fold himself backwards over the back of the sofa. Or he’ll have his legs crossed, yoga-style, and suspended in the air while he rests on his shoulders. Or he’ll curl himself up in a ball, with one leg sticking out at a highly improbable angle. Or a combination of many different poses. He’s never in the same position for more than a couple of minutes.

When he’s not twisted up, he’s like a perpetual motion machine—hopping, dancing, mock-battling, wrestling with his reluctant little sister. Dinner is always difficult for him. He’s usually the first one out of his seat (within three to five minutes), running around or hopping up and down. Even taking a walk can be an exercise (sic) in unique movement.

A Fun Walk

He’s not the only one, either. His next-oldest brother is very much the same way:

Upside Down Buddy

Now, this is a marked contrast to his younger brother who will, at odd times, simply plank.

Plank BoyKatie and I think he does this as a coping mechanism when he gets overwhelmed. He just shuts down for a few minutes, presses his internal reset button, and then he’s back at it again. He’s just as hyperactive as his brothers, but he has a different way of dealing with overstimulation.

Funny enough, though, if you put any of these kids in front of a computer on Minecraft, they can sit still, absorbed, for hours. They may be at odd angles again, but they’re still.

Isaac Newton Explains.

So what’s going on?

Katie and I think it’s related to something called Intense World Theory. Pioneered by a pair of neuroscientists in Switzerland, Intense World Theory posits that people with autism are hyper-aware of everything going on around them and within them. ASD folks feel everything so intensely—both physical and emotional—that their attempts to compensate need to be just as intense. It’s like an autistic version of Newton’s Third Law of Motion: For every action, there has to be an equal and opposite reaction.

So our armchair contortionists are merely reacting bodily to the busyness around them and in their minds. Their world is so intense and so full that they react to it in a similarly intense, involved way. Or it’s so intense that they need to shut it out at times, as our little one does, so that they can press their internal Reset button.

This also explains their ability to become so absorbed in the world of video games. It can be very loud and frenetic, but it is also limited and contained. Just a small screen (okay, small-ish) that they can turn on or off. And as noisy as it is, it’s also pretty predictable. So there’s an element of safety and comfort there. Of course, engaging in the virtual world doesn’t really help them get out their pent up energy. It only helps them suppress the need for it and, therefore, suppress their need to (over)react to it.

It’s Just Too Much!

All this can be kind of cute, but there’s another, more troubling, side to it.

Take my oldest son, for instance. He likes to go to Teen Gamers, a monthly gathering of middle- and high-school students hosted by the local library. It’s a place where kids can hang out, play video games, and have pizza, all under adult supervision. I don’t mind that it’s all about video games. Considering his social anxiety, it’s a golden opportunity for him to expand his social circle.

But as much as he enjoys himself there, as soon as he comes home, he hurries up to his bedroom and spends the next couple of hours in virtual seclusion. The same can happen after a long day at school or after we all go somewhere as a family. In fact, after just about any situation where he is out of his comfort zone, the boy high tails it to his room, turns off the lights, and burrows under the covers with his 3DS or his iPod Touch. The outside world is too much for him to handle, and he needs time to decompress.

Something similar happens with my older daughter, although with her, the reaction isn’t always delayed. She is just as likely to melt down right in the middle of a store or restaurant as she is to wait until we get home. That’s why we’ve come to expect her to spend a considerable amount of time in the bathroom at church on Sundays.

That’s how intense the world can be for these two. It can actually hurt to be engaged in it for too long.

Silly? Stubborn? Sullen?

I like this explanation a lot. It helps me see that my kids are not being antisocial—at least not on purpose. It also gives me some more insight into the way their brains are wired. And most important, it helps me adjust my plans and expectations.

I know, for instance, not to expect them to be able to handle a marathon day at Disney World. I should be happy to get three hours out of them—and that’s with one or two breaks so they can regroup. It also helps me understand what school is like for them. They spend six hours trying to maintain an ordered exterior while everything around them (and within them) feels like it’s set on overdrive. Of course they’re going to need some serious decompression when they come home—whether that means time on the trampoline or some mini-hibernation. There’s no way we should expect them to do anything productive like homework right away. And on days when there’s a lot of homework, we know we need to break it up into smaller chunks—or tell their teachers that they’ll finish it the next day.

Now, I know that they can’t expect this to go on forever. They’re going to have to find other ways to cope when things get too rough. There aren’t too many workplaces that have yoga mats or dimly-lit quiet rooms for decompression. And God help you if you take too many breaks! So we are trying to teach them how to increase their tolerance and find other, less obvious, ways to deal with all that frustration and overstimulation. It’s all part of living with ASD. They’re not being silly or stubborn or sullen. They’re just trying to survive.

If It Ain’t Broke. . .

Recently, a co-worker made a comment that continues to reverberate in my brain.

We were talking about a passage from the Acts of the Apostles that described some of the miraculous healings that St. Paul performed during his ministry. As you might expect, our conversation included on the age-old question of why we don’t see so many of these healings today. Mind you, we have seen real healings in our lifetimes, but they just don’t seem as prevalent as what is described in the Book of Acts. It was in this context that this fellow said: “Just think: if St. Paul were here today, so many people would be healed. Who knows? Maybe even your kids would be normal.”

I had an internal hiccup, but instead of addressing it I gently shifted the conversation.

Normal—It’s such a loaded word. It implies that my kids are abnormal, that they’re defective or not good enough. Now I doubt that’s what this fellow really thinks about my children. He has a history of choosing the wrong word at the wrong time. But still, the comment made me think.

Healing? No, Thanks.

First, there’s the question of healing. I said in an earlier post that I don’t pray for their healing half as much as I pray for their success in the world. Frankly, I don’t know what healing would mean for them. Autism, Aspergers, PDD-NOS—they’re all so pervasive in their effects on a person that it’s hard to disentangle the ASD from the person. Some would even say it’s impossible. It’s who they are, to the core of their personalities.

I have a very hard time imagining any of my kids without autism. I can’t fathom what they would look like. It’s not the same as if a deaf person were suddenly able to hear, or if someone were suddenly cured of cancer or diabetes. I suspect that if my kids were somehow “healed,” they would end up being different people.

Different, Not Less.

That’s the thing about ASD. It carries with it some heart-rending social challenges. It frequently causes cognitive and learning glitches as well. The brain of an ASD individual is wired differently, and that’s going to cause some deviations from a neurotypical brain. But along with the challenges and deviations come strengths and bonuses: Amazing attention to detail; very strong memory; hyper-focus; even the occasional savant expertise in an area. Not for nothing are figures like Thomas Jefferson, Wolfgang Mozart, and even Bill Gates identified as being on the autism spectrum. Heck, even Dan Aykroyd has said that he has Asperger syndrome!

Mind you, I wouldn’t complain if my six-year-old suddenly lost his tendency to melt down at the first sign of a change in plans. And it would give me great joy to see my eleven-year-old freed from her perseverations. But autism isn’t melt downs and perseveration. It isn’t anxiety and narrow focus of interest. Those are all symptoms of a broader condition: a brain that processes sensory input in atypical ways. The melt downs, anxieties, and perseverations are all the results of the core otherness of an ASD brain.

They are the results, too, of feeling the pressure to conform to other people’s expectations. It’s bad enough that so much in the world seems stacked against them. Just imagine how stressful it is to be made acutely aware of how different you are by people who misjudge you. Now add that to the already strong social anxiety that is typical for someone with ASD. And add all that to the virtual assault on the senses that many ASD folks feel when they are in an environment that they can’t control.

What Do I Want?

Asking for my kids to be “healed” of their autism would be like asking God to unmake their entire brain structure and forge a new personality. Is that really what I want for my children? Isn’t that a way of rejecting who they are and wishing they were someone else?

No, a far better approach would be to teach my kids how to make their way in a neurotypical world. I don’t want to change who they are. I want what every other parent wants: for my kids to learn how to deal with their challenges so that their natural strengths and gifts can shine.

Do you know what else I want? I want a world in which my kids, and everyone on the autism spectrum, are welcomed, respected, and appreciated for who they are and for the gifts that they bring. I want a world that understands these folks and treats them with the dignity they deserve. I want a world where they get a fair chance to show what they’re made of and to make a difference for other people.

They’re not broken. So don’t try to fix them.