A Wibbly-Wobbly Ball of . . . Stuff

Wibbly-Wobbly Ball

Before we start, take a look at this very short clip from Doctor Who, in which The Doctor explains the true nature of time. Trust me, it does relate.

That was pretty good, wasn’t it? Now for the explanation.

In a recent blog post, ASD guru and Aspergers role model John Elder Robison tackled the use of terms high-functioning and low-functioning when it comes to describing people with autism. Here’s what he said:

Much has been written about calling people high functioning or low functioning. With all respect to you and your situation, I don’t do it anymore and I suggest you don’t either.

It’s not accurate, and it’s degrading. . . . Suggesting that “you’re a real high functioning autistic” feels to me a lot like “you talk pretty good for a retard.” People say the former to me all the time today, and they said the latter to me quite a bit 50 years ago. I didn’t like it then and I don’t like it now.

Robison then goes on to talk about how dividing people up based on their “functioning” status misses the point of how autism works:

We now know that our functional level changes with time and other factors. As bright and capable as someone like me can seem, I can have meltdowns during which I become essentially nonfunctional and have no more usable intellectual capability that someone with an IQ of 70. It’s true that is not a lasting condition for me, but it happens, and when it does I would just as soon not be stigmatized for it.

As I said in my last post, my kids are showing me that autism can shift and swirl over time. Not for nothing is it called a developmental difference. It’s a matter of how and when a person develops social, cognitive, and communication skills. Some people develop more slowly or more unevenly than others. Some have persistent, nagging glitches in their development that affect them throughout their lives, while others overcome some challenges as they mature—only to find new challenges crop up. For many, it’s a mixture of both permanent and emerging attributes. So it’s awfully simplistic to reduce such a complex thing as autism to a question of high or low functional skills.

Forget the Spectrum.

But I want to go one step further. I want to suggest that along with abandoning the high- versus low-functioning distinction, we should scrap the image of a spectrum altogether. When we use this term, we evoke a kind of linear gradation, with some people lower down, or farther back, on the scale than others. But one problem with this approach is that people are assigned their place on that spectrum according to different criteria. Is it IQ? Is it verbal communication? Is it eye contact? Social skills?

Someone with limited verbal skills may well have an off-the-chart IQ. Or someone who can appear gregarious and outgoing in public may be masking significant social struggles, only to melt down in private. Where would you place each of these people on the spectrum? How would you decide? And most important, what purpose does it serve?

The Autism Ball.

Rather than talking about a spectrum, I’d like to suggest we talk about a sphere—a big ball of wibbly-wobbly, autism . . . stuff. There’s no low or high end. There’s no up or down or forwards or backwards. You just happen to be somewhere on that sphere, and your fellow autistics are somewhere else on it. No one is farther along than anyone else. No one is of greater value than another because he or she is “higher functioning.”

This is why I like the Doctor Who clip. It paints the picture of time, or in this case autism, as something that isn’t static but full of life and energy. And that makes it unpredictable: wild and mysterious, wonderful and dangerous.

So let’s imagine a ball that contains all the possible symptoms and manifestations of autism, all wibbling-wobbling around. Things like hand flapping, mind blindness, rigid thinking, sensitivity to loud noises, toe-walking, perseveration, narrow focus of interest. Imagine that ball also containing the comorbid conditions connected to autism: OCD, depression, ADHD, ODD, etc. Finally, imagine that this ball contains the positive traits of autism: laser focus, attention to detail, unflinching objectivity, a quirky imagination, a strong sense of justice, and an innate innocence.

Now, imagine your own ASD profile as a line running through the ball in one end and out the other end. As that line travels through the ball, it intersects with the various ways your autism manifests itself—not all of the traits, just the ones particular to you. No two lines are in exactly the same place, and no line is in a better position than another. They’re just there, marking out their own individual quirks and challenges, strengths and gifts.

High? Or Low?

All of this theorizing has a point. In an earlier post, I described how misleading the term “mild autism” can be. I gave some examples from my own kids of how difficult things can be for them, even though they would be considered high-functioning. As Robison said, people with high-functioning autism still have autism, and it still affects them profoundly.

We recently went through a rough patch with one of our kids, in which we saw just how much he keeps things hidden inside of himself, especially his awareness of how different he is and how hard it is for him to feel like he fits in. But on the outside, he presents as a clever, quick-witted, amiable boy. So while he seems very high-functioning, a lot of “low-functioning” stuff is going on underneath the surface: depression that can keep him in bed for two days straight, lack of empathy, misunderstanding of other people’s emotions, learning glitches, and an inordinate need for physical stimulation. He can navigate the outside world, but only for a time. Then he shells up when he’s home or alone. Where would you place him on the spectrum? Is he low-functioning or high-functioning?

Then there’s another one of my boys. You need only five minutes with him to “see” the autism: his odd gait, his lack of eye contact, his unusual speech patterns, his stimming, and his tendency to disappear within himself for a time. But hidden behind all of these quirks and tics is a very intelligent, sensitive child with keen insights into his own behavior and the people around him. Where does he fit on the spectrum? In the higher-functioning part of the line? Or the lower? Why?

Get on the Ball!

Mind you, most of this is irrelevant to me. I just look at them as my kids, with all of their strengths and weaknesses, their beauty and awesomeness, and work with each of them based on who they are. But it does make a difference in the universe outside of our home. It makes a difference when I attend IEP meetings or when I have to explain some unusual behavior to a friend or neighbor. It also makes a huge difference in the way society treats people with autism. If you’re a Bill Gates kind of autistic, you are given as many opportunities as you want. But if you’re nonverbal or if you’ve got some other trait that people might call low-functioning, you’ve got fewer chances to show just how awesome you are and what you can accomplish. And that’s sad, because you risk accepting a bleaker narrative about yourself and your potential than if you were given the opportunity to shine.

If we can get away from defining people based on their so-called levels of functionality, we can get closer to seeing each person as a precious individual with his or her own unique set of talents. We will stop assigning each person a value based on what he or she “contributes” to society. Each person is a gift, and you don’t assign a value to a gift based on its usefulness. You treasure it for what it is: a token of love from the One who gave it to you.

So get off the line and get on the wibbly-wobbly ball!

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.

Who’s Speaking for Whom?

people-not-puzzles-300x225So there was a bit of a dust-up in the autism community this past week. Suzanne Wright, one of the co-founders of the well-known advocacy group Autism Speaks, published an article about the group’s conference in Washington, DC. In the article, Wright characterized families touched by autism in rather vivid terms:

These families are not living. They are existing. Breathing—yes. Eating—yes. Sleeping—maybe. Working—most definitely—24/7.

Wright goes on to describe the challenges that many families with autism face: financial worries, therapy challenges, concerns about their children’s health and safety, anxieties about the future. All in an attempt to rouse policymakers to come up with some kind of strategy to address the coming “national emergency” of all these autistic children growing up and becoming a huge burden on society:

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.

It’s an impassioned, heartfelt call—even a demand—for action.

An Aspie Pushes Back.

Well, many people with autism found the letter deeply offensive. They thought that it overemphasized the burden that many families face and, worse, that it dehumanized the people with autism that Autism Speaks purports to speak for. Painting an extreme picture, Wright gave the impression that all people with autism are as helpless as those with the most extreme forms of the disorder. They are all part of a “national emergency” that needs to be addressed immediately. Critics also detected a subtext implying that the goal of Autism Speaks was to rid the world of people with autism: to cure it and prevent it. And they saw in that desire a rejection of who they are.

The article was so one-sided that even a member of the organization’s science board—an fellow with Asperger syndrome named John Elder Robison—resigned his position in protest.

We do not like hearing that we are defective or diseased, he wrote. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

This isn’t the first time that Autism Speaks has drawn fire like this. In 2009, the organization produced a video, I Am Autism, that also painted a bleak picture of the disorder. In it, autism itself spoke about how it is coming to take away our children, bankrupt us, and destroy our marriages. It spoke, again, as if children with autism were so defective that they were no longer “there.”

A Two-Edged Sword.

All this controversy got me thinking some more about my own experience.

On one hand, I can relate to the picture painted by Autism Speaks. I know what it’s like to be scared about my children’s future. I know what it’s like to feel worn to the bone from dealing with autism-related challenges from my kids. I know how it feels to face financial limitations or to have to explain one or another child’s unusual manner to a neighbor at the park or a stranger at the store. I know what it’s like to grieve when the news of a child’s diagnosis is delivered—I’ve done that one six times!

But that’s not the whole story. My kids aren’t problems. They aren’t the sum of their challenges. They are smart, funny, and innocent. They are perceptive, clever, and talented. The more I get to know what makes them tick, the more I am learning that autism is behind some of the things that make them so awesome.

Moving toward Acceptance.

I see how Autism Speaks’ approach can strike a chord, especially among those with young children or those struggling to embrace a recent diagnosis. In a sense, they’re saying, “Hey, we get it. It’s hard. It’s painful. It’s scary. But you’re not alone. We’re here, and we understand how tough this is.”

I don’t think, however, we’re meant to stay at this point of feeling overwhelmed, terrified, or devastated. In each autism-touched family that I know, there comes a point when everyone calms down, takes a breath, and readjusts their expectations. There comes a point when they are able to look past the label and see the beauty and goodness in their children. It’s supposed to be a natural progression, like the five stages of grief identified by Elisabeth Kübler-Ross: denial, anger, bargaining, depression, and acceptance. Sooner or later, you have to get to acceptance. You can’t stay stuck in anger or depression. You have to keep moving—if only because your kids are moving, and you have to keep up with them!

By constantly banging the drum about a national epidemic, by playing the fear card over and over again, organizations like Autism Speaks inhibit people from moving to the point of accepting their children as precious gifts from God. They also are complicit in fostering a kind of victim mentality in families touched by autism. “Look at how hard our lives are. Look at how damaged our children are. Pity us! Help us!”

Who’s Talking?

In the past, I supported Autism Speaks 100 percent. I wore their lapel pin and wrist band to help raise awareness. I followed their blog. I attended seminars sponsored by them. I even raised a good amount of money for them.

But now I’m not so sure. As John Elder Robison said, I’m not sure that Autism Speaks really does speak for my kids. I don’t want my kids growing up feeling like victims. I want them to be victors. I want them to use all their gifts—even the ones that autism has given them—to show the world that people like them can make a huge difference. I want them to embrace everything about who they are, even their autism, and turn it into something that glorifies God and lifts up the people around them. And they can’t do that if they think of themselves as problems or burdens.

Autism awareness is important, but only if it leads to acceptance. Not just pity or tolerance but acceptance.

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.

Different, Not Less

Grandin
Danes 1So we saw the HBO movie Temple Grandin this weekend. For those who don’t know, that is the name of a professor of animal science at Colorado State University. Her designs for slaughterhouses have revolutionized the beef industry, and she is an outspoken advocate for the humane treatment of cattle. She has become a household name among ranchers and cattle handlers, and her book, Thinking in Pictures, is a best seller.

Temple Grandin has autism. She didn’t speak until she was four. She was expelled from elementary school, and bullied in high school. She hates being touched by anyone, even her mother. She eats only yogurt and Jello. She insists on wearing cowboy shirts and jeans everywhere she goes. She can’t stand loud noises. And she developed a special “squeeze machine” that she used for decades when she would feel overwhelmed or close to melting down.

Katie and I had seen the movie before, but we wanted our older kids to see it this time. We wanted to expose them to someone on the autism spectrum who has made a successful life for herself, someone we consider a true hero in the world of ASD.

The kids enjoyed the movie, and our two oldest were able to see some of their own lives in this woman’s story. But honestly, I think Katie and I learned more than they did. We have been working so hard lately on getting the kids through school assignments, helping them work on their social skills, and managing melt downs that it was good to be able to step back and get a big-picture perspective. Watching the movie’s portrayal of some of the emotional toll that ASD takes on a family was difficult at times, but the tough stuff was overshadowed by the portrait of a young woman who pushed through numerous deficits to find her way in the world and make a real contribution. It also portrayed a mother who simply would not give up. “Different, not less.” That’s how she constantly described her daughter to skeptics and scoffers. She held on to the vision of her girl making it through college and living independently, pursuing a career, and she imparted that kind of determination to her daughter.

This may sound like a feel-good, moral-of-the-story type of movie. And to a certain degree it is. But what it did for me was remind me that all the work we’re doing for our kids has a purpose. It can be so hard just getting through a day sometimes that I can forget how much potential these kids have. The tunnel vision that results from daily battles can make me lose sight of the future that is available to them—a future that is just a bright and promising as any neurotypical child.

You see, psycho-educational testing has shown that our kids are all very bright. There’s not a dim bulb among them. Some are absolute geniuses, in fact. But their ASD can make it hard for them to want to test their limits. It can keep them locked up in themselves. And it puts them at a disadvantage in a school system that, despite its high ratings, still relies far too much on a cookie-cutter approach to education. But watching this movie again helped me see that my kids really do have a lot to offer. It’s bottled up inside, and it’s up to Katie and me to find ways to get it out in the open. It’s also up to us to convince teachers and administrators that they’re worth the effort. (Believe me, we’ve had to deal with more than our fair share of naysayers. And something tells me we’re not done with them yet.)

But the other thing the movie did was to help me see that it’s not all up to Katie and me. Yes, we have a ton of work to do to help them face a world that won’t readily understand or accept them. But our kids are also capable of discovering their own passions and chasing them down, if we can just set them on the right footing. I am a worrier by nature; I’ve always known that. Sometimes in my worrying and trying to get everything just right, I can forget that my kids are making their own plans and developing their own visions quite independent of me. And that’s okay, as long as Katie and I can give them the foundation they need to pursue these visions—and the skills they will need to live in a world that can seem so alien to some of them.

Anyway, here’s a link to the final scene from the movie, where Temple and her mother attend a conference on autism, and Temple gives an excellent summary not only of some of the major challenges that people with ASD face but also of her mother’s hard work on her behalf. It’s really quite touching to see the different emotions that play across her mother’s face as Temple unwittingly gives a huge, long shout-out to everything her mother did for her. Watch it, and you’ll see why this is the scene never fails to put a lump in my throat.

Yes, our kids are different. At times, very different. Quirky with a capital Q different. But they are not in any way less. That’s something I have to keep telling myself. But it’s also something that they’re beginning to tell me.