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.

The Call of the Mild

Clark Kent

The most recent estimates from the CDC tell us that 1 in 50 school-aged children are on the autism spectrum. That’s a considerable jump from the 2008 estimate of 1 in 88 children. Which itself was a huge jump from 1 in 150 in 2000.

So what gives? A raging epidemic? Not really—at least not this time around. It seems that a major reason for the jump is the CDC’s new method of data gathering. The 2008 number of 1 in 88 is based on a survey of clinical records of 8-year-old children in only 14 states. But the new numbers are derived from a national phone survey of parents of children aged 6-17.

That’s a lot of changed variables, so the numbers are bound to be different. Not to mention, the latest study reports a large increase in older children (ages 14-17) who were not previously identified as being on the autism spectrum now receiving a diagnosis—a sign that increased awareness is leading to increased diagnoses.

Then there’s this difference, which really grabbed my attention: One of the largest increases in reported cases is of children shown to be on the less severe, more mild, end of the spectrum.

This is probably an apt description of my ASD kids. They’re verbal. They score pretty high in intelligence testing. Their social deficits, while real, don’t tend to be crippling (well, maybe sometimes). They have mild forms of ASD.

Here’s What Mild Looks Like

But just what does mild look like? Here are a few pictures.

• Mild is the adolescent girl who, in the throes of a melt down, spits a mouthful of her half-chewed dinner at her father.

• Mild is the seven-year-old whose reaction to even the smallest disapproval or conflict from his parents borders on global thermonuclear war, complete with high-pitched, spine-tingling screams.

• Mild is the four-year-old who, if the conflict between what he wants and what he needs to do gets too intense, goes stiff as a board and refuses to talk.

• Mild is the nine-year-old who comes home crying, convinced that he’s a complete failure because he can’t understand why his classmates don’t want to play dodge ball according to his unique rules.

So while it is good news that the increase in diagnoses is for kids on the mild end of the spectrum, observers need to understand that mild ASD is not the same as a mild head cold. It’s hard. It’s painful. And it doesn’t go away.

Mild, but Significant, Improvements.

Something else about this term, “mild.” The fact that my kids are doing as well as they are is a testament to the benefits of intervention and education.

My oldest, for instance, has come so far that a general psychologist—one not trained in the intricacies of ASD—wonders if he is on the spectrum at all. Of course, this is highly unlikely, seeing how the school psychologist, the psychiatrist, and our ASD psychologist all stand by their diagnoses. Still, it’s a huge relief to see this kid overcome some of his social deficits and learn how to deal with many of his sensory processing challenges. And there are times when we can’t tell whether what we’re seeing is ASD or just ATD—American Teenager Disorder.

The there’s our youngest. We caught him early—around 18 months—and he has been receiving speech and pragmatic language therapy for nearly two years. He has made significant headway in his social skills, and some of his sensory problems have begun to diminish. Still, a day doesn’t go by without Katie and me looking at him, then looking at each other, and sharing an all-too familiar sigh.

What Works?

Yes, therapy works. Katie and I can attest to the fact that our kids were not always as manageable as they are now. That’s because, in part, we know what we’re doing now—at least more than we did when the first diagnoses were handed down four years ago. Using the techniques like cognitive and dialectical behavior therapies, we are learning how to handle, and sometimes even prevent, melt downs. (We don’t always do well, mind you, but that’s a different story.) We’re teaching our kids how to understand their peers. We’re showing them strategies for dealing with the stresses they feel just living in a neurotypical world.

Through bitter experience, and thanks to a lot of help from coaches, we are also getting much better at advocating for our kids in school. And the older ones are even beginning to learn how to advocate for themselves.

We also have not shied away from medications if we think they can help manage some of the symptoms of ASD. I’m talking about antidepressants, ADHD medicine, sleep aids, and the occasional anti-psychotic. Every now and then, we cringe at the thought of the chemicals our kids are ingesting. But then we think back to what they were like before, and we relax.

Beating the Odds?

It’s a good thing, every now and then, to chart the growth our kids have made. But we both know that this doesn’t necessarily mean that they’re being cured. In fact, a recent study showed that while it is possible for some people on the autism spectrum to recover to the point that they lose their diagnosis altogether, it is still pretty rare, and it never happens without years of intensive therapy.

That’s what we’re working toward, even though we know it may never happen. It’s why I make the fifty-mile round trip journey to our therapist twice a week. It’s why Katie has read close to twenty books on ASD and its treatment. It’s why we are in weekly contact with our kids’ teachers, guidance counselors, and school administrators. It’s why we don’t have a social life—or much of a life at all. And it’s why we keep working with our kids, never excusing them or letting them off the hook. They have made good progress so far. But they have a good way to go if they want to beat the odds.

So the next time you hear about mild autism or mild Aspergers, don’t write it off. Usually, there’s a lot going on behind the scenes—a lot of heartache and anxiety. A lot of hard work and uphill climbing. A lot of praying and prodding. A lot of two steps forward, one step back—and sometimes the other way around. But it’s all worth it. We ASD parents know our kids have huge potential, and we won’t rest until we see them realize it.

A Whole Blue World

As many of you know, I reached my fundraising goal of $1,500.00 late last month. What a great feeling, both being able to raise so much and seeing the support that so many friends have given us. Every donation has been a moving testimony to Katie and me that we’re not alone in this journey.

But as inspiring as it has been to come this far, I believe we can go farther. I know there are still people out there who need just a little more encouragement—or a couple more reminders. There are still aunts and uncles, cousins and godparents, co-workers and neighbors, friends and even frenemies out there, just waiting for another invitation.

So here’s the new incentive. If I can get to the $2,000.00 level before the walk, I’ll dye my whole head blue. Yup—the entire cranium. All it takes is $500.00. That’s just $50.00 from 10 people. Or $100.00 from 5 people. Or $25.00 from 20 people. That’s not too hard to imagine, is it?

And if you do give, here’s how your donation will be put to work.

First, there’s Autism Speaks’ research program, which makes grants to pediatricians, geneticists, psychologists, neurologists, and other professionals delving into the causes and treatments of autism spectrum disorders. The program also includes the Autism Genetic Research Exchange (AGRE), which is building a comprehensive research database comprised of DNA, clinical, and medical information from families with two or more children on the autism spectrum. Needless to say, our family is a mother lode of information for them! We’ve been part of the AGRE project for the past three years, and it feels great knowing that we’re able to help.

There are also a number of online tool kits developed by Autism Speaks. The most popular is their 100 Day Kit, which was created for parents of newly-diagnosed children. Those first few months are often filled with anxiety and loads of questions, and this online tool offers expert guidance to help parents acclimate themselves to their new reality. Other tool kits give parents information concerning medication options, various behavioral treatments, and navigating challenging events like dental visits and potty training.

Next, there’s Autism Votes, the lobbying arm of Autism Speaks. The purpose of this group is to advocate for laws that will protect people on the spectrum. Some states still don’t require insurance companies to cover behavior therapy or speech and occupational therapies to people with an ASD diagnosis. Autism Votes is in these states, working to convince lawmakers that the upfront cost of these requirements is far less than the long-term costs of caring for people who never learned the skills they needed to help them function in the outside world. Autism Votes was also instrumental in getting the Combating Autism Reauthorization Act (CARA) through the House and Senate. This act secured nearly $700 million in federal dollars over three years for autism research, treatment, and services. It’s still not where it should be, but at least there’s movement.

See how much good you’ll be doing if you make a pledge? It’s not about making me dye my hair blue; it’s about helping to improve the lives of families touched by ASD. It’s about figuring out what causes this thing in the first place. It’s about making the world a more welcoming place for folks on the spectrum. So if you haven’t made a donation yet, go ahead. Push me over the $2,000.00 mark. You can help make a difference in so many lives. And if you’ve already donated, thank you so much. You’ve already made a huge difference!

We Did It!

Cue the fireworks and strike up the band! As of this Wednesday, I reached my goal for the 2012 Jacksonville Walk for Autism Speaks. Or perhaps I should say that we reached our goal for the walk. Each and every one of you who donated helped get me closer to the $1500.00 mark—and closer to blue hair. Thank you all so very much!

I can’t tell you how moving it was each time I received notification that another one of you made a donation on our family’s behalf. When I began this thing back in March, I imagined I would see the numbers rack up over time with a dispassionate acknowledgement of my friends’ generosity.

Sure, I’d be grateful and all that. But I wasn’t expecting to be as affected as I turned out being. Each time another name was added to the list, I would think of that person and all that he or she has meant to me or Katie over the years. It would feel as if that person were right there with me, assuring me that we weren’t alone in this. And that has made a very big difference. Now, when I walk on September 29, I’ll be taking each of these people with me in my heart, thanking them for their concern and praying that God will shower them with his blessings.

A Few Moving Surprises.

Something else that surprised me was the great variety of people who donated. One pledge came in from a priest in Noblesville, Indiana whom I haven’t seen in decades. We knew each other when I was in College at Mount St. Mary’s and he was a seminarian there, but haven’t seen each other since our days at the Mount in the late 1970s and early 1980s. Another came from a co-worker at The Word Among Us whom I have met only once or twice, but who has never met Katie or my kids. Still, she wanted to help. And a third came from a cousin up in Pennsylvania whom I don’t think I’ve seen since I was in my twenties.

Of course, the people you would expect to give showed up—the family members and close friends who see you regularly. But to hear from people like those I mentioned above—that’s just amazing.

So now I’m off to get some blue dye and a puzzle-piece template. But I’m not done yet. There are still four weeks to go until the walk. There’s still time to give, if you’ve been putting it off. Don’t let the fact that I’ve reached my goal stop you. In fact, I’m thinking (not sure yet) of upping the ante and promising to dye my whole head blue if I get to $2,000.00. Now wouldn’t that be a hoot?

One Small Step.

It’s a great feeling to know I’ve reached my goal. But that’s just small potatoes. The medical and scientific community is still a long way off from reaching its goal. We still know so little about the causes of autism spectrum disorders. We still know so little about how to help those afflicted with ASD. And we surely have a verrrrry long way to go in raising awareness about this little-known but rapidly-growing disorder.

Too many kids are being bullied and written off in schools all around the country. Too many adults are unemployed or underemployed because people can’t see all they have to offer. Too many pediatricians don’t know ASD when it’s staring them right in the face. Too many parents are told there’s no hope . . . when there is tons of it.

So I reached my goal. So I’m going to walk. But that’s just one small step. The whole ASD community has a very long road to walk. I am so grateful to each of you who have made this one step possible. Still, I can’t help but keep appealing to everyone else to help us get a little bit farther. Just click on this link, and help us out. Thanks to all of you!