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.

Words I Wish I Never Heard: Perseveration

Poodle (our favorite nickname for our six-year-old girl) has tumbling class every Friday at 5:00. She is a very flexible, high-energy little sprite, and she loves the chance to jump, roll, run, and play with other kids her age. The place where she goes is an easy fifteen-minute drive from our home, and she’s been there a number of times. Still, the following sequence of events happens just about every Friday afternoon.

4:15 p.m.

Poodle: Mommy, I have to get changed for tumbling. I don’t want to be late.

Katie: We’ve got lots of time, Poodle. I’m in the middle of something. I’ll help you in a few minutes.

Poodle: No, Mom. I don’t want to be late. You have to help me now.

Katie: Hang on just a couple more minutes. We won’t be late. I promise.

Poodle (her voice quavering a bit): Okay. I just don’t want to be late.

4:20 p.m.

Katie: Okay, Poodle, let’s get you dressed. Get your leotard from your room and bring it down here.

Poodle: I can’t do that! The boys will see me.

Katie: No they won’t. We’ll go in my bedroom and close the door.

Poodle: Are you sure? I don’t want the boys to see me naked.

Katie: I promise I’ll close the door. I’ll even lock it if you want.

Poodle: Ohhhh, Mommy, I don’t know. I don’t want the boys to see me naked.

Katie: I promise they won’t. Now get down here so we can get you changed.

Poodle (nervously): Okay. I don’t want the boys to see me naked. You’re sure we won’t be late?

Katie: I promise.

4:25 p.m.

Katie: Go get your Crocs so we can get going.

Poodle: I don’t know where they are. Let’s just go. I don’t want to be late.

Katie: It’s okay, Poodle. We have lots of time. Go and find your Crocs.

Poodle: No, Mommy. I don’t want to be late. I can’t be late. They won’t like me if I’m late. Let’s go!

Katie: I don’t want you going outside without any shoes. It’s raining, and it’s chilly. Find your Crocs, and we’ll get going.

Poodle: Please, Mommy! I don’t want to be late!

Katie: Tumbling is only 15 minutes away, and we have more than 35 minutes to get there. We’ll be fine.

Poodle: No, Mommy, no. We need to go now. I don’t want to be late!

Katie: Fine! Get in the car. I guess I can carry you into the tumbling studio.

Poodle: Okay. I don’t want to be late.

4:30 p.m.

Poodle (wringing her hands): Mom? How long before we get there? I don’t want to be late.

Katie: Fifteen minutes.

Poodle: Is that enough time?

Katie: Yes, it is. We’ll get there with fifteen minutes to spare.

Poodle: Are you sure? I don’t want to be late.

Katie: Yes, I’m sure. Look how far we’ve gone already. We’ll be there with lots of time.

Poodle (suspiciously): Okay, if you say so.

4:33 p.m.

Poodle: Are we getting close? I don’t want to be late.

Katie: Yes, we’re getting close.

Poodle: Will we be there on time?

Katie: We’ll be early.

Poodle (twisting a lock of her hair): Are you sure? I don’t want to be late.

Katie: Yes, I’m sure.

4:40 p.m.

Poodle: When does tumbling start?

Katie: In twenty minutes.

Poodle: Will we be there in time? I don’t want to be late.

Katie: I told you already, we’ll be early. We’re almost there.

Poodle: We’re not going to be late, are we?

Katie: No, we’ll be early.

4:44 p.m.

Poodle: Are we going to be on time? I can’t be late. They don’t like it when I’m late.

Katie: Look up there. See that traffic light? The studio is just beyond that light. We’ll be there as soon as the light turns green.

Poodle: No we won’t. We’re going to be late.

Katie: Don’t worry, Poodle. When the light turns green, we’ll be there.

Poodle: You’re going to go as soon as the light turns green?

Katie: Yes, I will. Then we’ll be at tumbling.

Poodle: Ohhhh, how much time do we have now? Are we going to be late?

Katie: We have fifteen minutes. All we have to do is cross this intersection. Then we’ll be there.

Poodle: Are you sure? I don’t want to be late.

Katie: Yes, I’m sure, Poodle. We’ll be there in less than a minute.

4:46 p.m. [The light turns green.]

Poodle: How much time now, Mommy?

Katie: Fourteen minutes.

Poodle: Are we going to get there in time?

Katie: Yes, we’re pulling into the parking lot right now.

Poodle: We won’t be late?

Katie: No, we have lots of time.

4:47 p.m. [Katie carries her, shoeless, into the studio.]

Poodle: We’re not late, are we?

Katie: No, we’re not.

Poodle: That was close, wasn’t it?

Katie: I guess so.

Poodle: Okay. Are you sure Daddy is going to be on time to pick me up?

Katie: <sigh> Yes, I’m sure.

Do They “Get” Religion?

We had quite a bit of drama last Sunday over getting the kids to church. One in particular—our second, a 12-year-old girl with Aspergers—gave us a lot of grief. First, there was the feigned illness excuse. Then there was the pulled muscle stratagem, in which she faked a sore back because she had been throwing the football with her brothers the day before. Then, when all else seemed lost, she pulled a very clever ploy: the constipation gambit. Just one minute before we absolutely had to get out the door, she ducked into the bathroom, locked the door, and protested that she really had to go, warning us that it would take a long time.

By this point, I was done. I had been working with the others, trying to get them ready, all the while fielding this girl’s anxious protests. So by the time she played her final card, I gave up and told her to stay home. I also made sure that the computers were not accessible. I may have been done, but I was not going to be anybody’s fool!

Then came the afternoon, when she was set to go to Sunday school, or CCD as we Catholics call it. She had sworn up and down all day that she would not try to get out of it, but as soon as the time came, the same old excuses came up. Only this time with far more emotion: desperation, anxiety, fear, anger, recrimination, exaggeration. You name it, she threw it at us. Again it was clear that, short of physically throwing her in the car and dragging her to class, it just wasn’t going to happen. (Note: she’s big for her age, and not all that easily moved. If I were to try the physical approach, I would likely look like an abusive dad.)

This was all so frustrating for me. This girl is getting close to her confirmation, and to this point everything related to God or faith or the Church has been a struggle. As you can guess from previous posts, I take my faith pretty seriously, and one of my highest goals is to see all my kids come to a personal embrace of their faith, just as Katie and I have. But this is probably the best picture of how this girl’s guardian angel must feel on Sundays.

Image

Literal Brains, Spiritual Truths.

It took me a few years to get to the point where I’m not all that surprised by this. For quite a while I tried to force my expectations on them, wondering if they would ever accept the faith that is so important to Katie and me. It’s hard to admit that this may never happen because of their ASD, but I’ve come to realize that it’s a very real possibility, if not a downright probability.

After all, teenagers on the autism spectrum tend to have a harder time with religion than their neurotypical peers. ASD kids are very concrete thinkers. Inference and abstraction are foreign concepts. So the thought of an invisible Person whose presence and influence can be detected by intuition and emotion can seem absurd. Aspies tend to be fiercely independent and unwaveringly evidence-based, so there’s not much room for faith in a brain like that. There’s not much room for the idea of submitting one’s heart and mind to an exterior, mysterious God. If my girl were in the upper room with St. Thomas, she would have outdone him in his demand to probe the wounds of Christ before believing that he had risen from the dead.

All this can make the whole idea of a religious service, whether it’s a solemn Mass or a nondenominational electric guitar-fueled gathering, extremely foreign. Then, when you consider all the sensory issues involved—incense, lots of unfamiliar people, loud music, all that sitting and kneeling and standing—it’s a melt down waiting to happen.

At times this has left me wondering if I should even bother to teach the faith to my children. Maybe it would be better just to aim for good, moral kids who stay out of trouble. If their brains are wired so differently, why pretend they’re going to “get it” anyway?

Meeting God.

But I just can’t do that. I may have to accept a different script for my children’s lives than I had intended, but I’m still not giving up. For all the trouble it can cause, and for all the creativity it can demand to get them to Mass, I still believe it’s worth it.

That’s because I believe in a God who acts—and who acts dramatically. You see, while many of my convictions about religion were formed by the Catholic intellectual tradition—I studied philosophy and theology at a Catholic liberal arts college—these convictions came to life for me because of a deep interior conversion experience.

It’s a long story, but suffice it to say that when I was a junior (32 years ago this month, in fact), I had an experience of God that was intensely personal. Everything I had learned in my brain became real to my heart, and I was convinced beyond a shadow of a doubt that God was real, that Jesus loved me, and that his Holy Spirit was alive and working in my life. I felt a joy I had never known before, as well as a freedom from guilt and a new sense of purpose to life. I’m convinced that without this experience, I would have lost interest in God years ago.

That’s why I’m not giving up. I know that God is bigger than ASD. I know that he loves my kids. And if he loves them, he can’t help but want to show them his love. So I believe that somehow, somewhere, in some manner, he will do for my children what he has done for me. He’ll make himself known and touch their hearts. I don’t know when. And I certainly don’t know how. But I believe deeply that he will do it. I just have to adjust my expectations of what that will look like.

Doing My Part.

So in the mean time, I’ll keep doing what I can. I’ll keep making sure that they have the data in their minds so that when God moves, it can transfer to their hearts. I won’t try to force faith on them. And I certainly won’t get my expectations too high about their emotions or their spiritual intuitions. Where some of my friends’ older kids are beginning to own their faith, I’m not expecting my kids to do that any time soon. At this point, my main concern is to make sure that the information is there. It’s to help them feel as comfortable as possible in church. I know they may never be all that comfortable. But at least it’s a start.

So here I am doing my part. The rest is up to you, God. Good luck!

And if it never happens for them, if they never “get” the experience I had, I won’t sweat it. As I said above, God is bigger than ASD. He’s also bigger than any one model of religious experience or salvation. Even if they can simply come to accept the premises of faith and try their best to live an upright life, I’ll be happy.

Because you made them the way they are. You know who they are. And you won’t let them down.

Am I Out of Your Mind?

We were at Mass a couple of weeks ago when my six-year-old had one of his more dramatic melt downs. In a previous post, I dissected a melt down that my oldest daughter had at a local sub shop. There, I talked about how sensitive ASD folks can be to ordinary visual and auditory “noise.” It can cause such an assault on their senses that they lose control.

Well, church is another place where this can happen. You are surrounded by a ton of people intoning unfamiliar words. Choirs, often mediocre in quality, sing with great gusto in the belief that high volume equals deep sincerity. Women are more intensely perfumed than when they go to the grocery store . You also have statues, stained glass windows, and spot lights to contend with—not to mention the occasional use of incense. When you look at it from an ASD point of view, church can be a disaster waiting to happen.

From Pillar to Post.

I’ve been working with my boy the past few months, taking him to the more subdued Saturday vigil Mass—and only with his next-older brother, who has recently mastered the art of respectful silence. He was doing so well that I thought it was time for the whole family to try to go to the better attended, more formal Sunday morning Mass. Katie took three kids to one side of the church, and I took the other three to the opposite side. (Baby steps. We’re not ready to be all together yet.)

It wasn’t long before I discovered that we’ve still got some work to do. The kid could barely keep himself together. He kept trying to play raucously with his younger brother, and whenever I separated them, he would break into prolonged sobs and full-voiced promises to do better. After a bit of this, and seeing that I would not grant him access to his brother, he began climbing over me to get to the little guy—which prompted more hushed remonstrations by me, which prompted louder protestations from him. And on it went through the readings and homily.

By the time we got to the Creed, my half of the family was heading for the nearest exit—with the boy bewailing his fate the whole way. His older brother found the other half, and I sat outside the church with the other two, listening to the rest of the liturgy through the outdoor speakers. At least I knew when it was time to go back in for communion.

Mind Blindness.

Now much of this could be attributed to normal six-year-old rambunctiousness. But the most telling ASD sign was his lack of regard for the people around him. He had no concept that his antics or his complaints were disturbing anyone. He was unaware of the nonverbal cues given by the folks in the pew in front of us—cues that included one gentleman turning around and looking right at him with a bemused scowl on his face. Even when I pointed out to my boy that he was keeping other people from praying, it didn’t register. It was only when we got home, away from all the noise and distractions, that I was able to help him see where he had gone off the rails. And I know that this won’t be the only time he loses it. We’ve got a way to go—slow and steady—until he learns how to read a situation and act appropriately in it.

So how is this related to ASD? Because folks on the spectrum tend to have a deficit in what is known as “theory of mind.” It’s also called “mind blindness.” That’s psych-speak for the ability to recognize other people’s perspectives, beliefs, needs, and desires. People with ASD need extra help in understanding that other individuals have their own personality, think their own thoughts, and have their own preferences. What’s more, they don’t get that they themselves have a limited, subjective perspective. To a greater or lesser degree, the sum total of reality is limited to what they perceive or what they are aware of. This is especially the case when they are under stress or in a new, frightening environment. As their neurotypical peers would do in similar situations, they collapse in on themselves—only more dramatically. That’s where the term autism comes from: auto is the Greek root for “self.”

This mind blindness regularly gets a good portrayal in the television show Parenthood. One of the characters is a boy named Max, who has Asperger syndrome. In this clip, Max has a hard time navigating an ordinary history lesson. He doesn’t get that he has to show some deference to the girl in the desk next to him, and he isn’t clear on the respect due to his teacher. But as the clip shows, Max is not really being disrespectful. He’s being “a-respectful.” And that can be very maddening for the uninitiated.

The “Data Myth.”

Now all this makes a lot of sense, and it’s very helpful as I work with my kids. Very often, they’re not being bad, they’re just being aspie. And that gives me something to work with.

But a word of caution is needed here as well.

There are those who would equate mind blindness with a lack of empathy. Because ASD folks have a hard time reading other people’s faces, vocal tones, or body language, they must be incapable of making contact with them or having meaningful relationships. They’re like the android Data on Star Trek: The Next Generation. But mind blindness is not the same thing as lack of empathy. In fact, folks on the spectrum can be very loving and kind. They just don’t know how to show it. Or they show it in inappropriate ways. And that can lead to a kind of isolation in which the ASD person has few friends, if any. He wants to reach out, but he doesn’t know how. And he can have a hard time seeing when someone else is making a friendly overture to him, or he misinterprets it as something else. Then the social faux-pas happens, and he ends up alone again.

We’ve been through this with our older kids, and it can be heartbreaking. We try to help them understand what a potential friend was trying to say or do—but it’s usually wisdom given after the fact. And then it doesn’t help all that much, because ASD folks also have a hard time generalizing from a specific situation to a number of similar ones. It’s a horrible Catch-22 for them, but that’s where they are.

So we keep working with them. We especially keep working to make sure they know that they are loved and welcomed and accepted as the wonderful people they are. In this way, we are blessed to have a large family. Our kids have no choice but to figure out how to relate to other people. It’s the only way we’ll get anything done as a family! They’re getting some vital socialization right under their own roof, and we know that’s going to help them once they enter the world and try to make a way for themselves. In the mean time, they’ve got us. And they’ve got each other. And that’s just fine for now.