Meekro's Blog

Book Review: Ido in Autismland

Ido is a young boy living with severe autism. He can’t talk, and he has major trouble getting his body to obey his mind. Therefore, he couldn’t communicate in any way until the age of 12. Since then, he’s learned to communicate by tapping on an iPad. He’s kept a journal, and has published that journal as this book.

The Experts Know Nothing

The story of Ido’s youth (around ages 6-12) is marked by great frustration with so-called autism experts. From the very start, the experts were dead wrong about him. It would go like this: A doctor who specializes in autism would meet with Ido. The doc would ask Ido to bring him a Coke and Ido would return with a Sprite. The doctor would conclude that Ido doesn’t know what a Coke is or can’t read the label on the can. Or he would tell Ido to go to the kitchen in his house, and Ido would walk to his room instead. The doctor would conclude that Ido doesn’t know where the kitchen is, or perhaps that he doesn’t understand verbal commands at all. Repeated failures like this would see Ido trapped in remedial classes year after miserable year, repeating mind-numbing lessons that he understood a long time ago.

Inside himself, Ido would scream, “I KNOW where the kitchen is! My body just won’t obey my mind!” but all that would come out is weird noises and hand-flapping. Inside was an intelligent young boy, but nobody knew.

One day, his mother got a hint. She was showing Ido a picture from one of his favorite stories, The Jungle Book. She held up his arm to support it and asked him to point to Baloo. He did. She named a few more characters, and he was able to point to each one. The mother was overjoyed. “He understands!” She was eager to share this discovery with the doctors and teachers who worked with Ido, but to her dismay none of them believed her. To them, she was an overzealous mother attributing to her son a level of understanding that he couldn’t possibly have. They concluded it was much more likely that she was inadvertently moving his hand while supporting his arm.

It would take years for the mom to convince the skeptical experts, as well as her own husband. The prevailing wisdom – that severely autistic kids couldn’t possibly learn these things – was too strong in their minds. They weren’t willing to accept the possibility that this wisdom was wrong, even when the evidence was staring them in the face.

In time, though, things got better. Ido learned to communicate by pointing at a letter board. Eventually he learned to use an iPad to type on his own, without anyone supporting his arm. He would go on to write a book this way. Despite all that, and to this day, some experts are still not convinced that he’s doing it himself. Prevailing wisdom prevails, after all.

Communication

Ido writes about the joys of being able to communicate. For the first 12 years of his life, he had a complicated inner world that he could not share. When he learned to communicate – first on a letterboard, and later on an iPad – that changed everything for him. It seemed to give him hope for the first time in his life. He could now tell his mother about how his day went or tell the experts about all the misconceptions they have about autism. He could even write a book and tell the world about autism.

Ido is deeply saddened when he sees another autistic kid still locked into himself, unable to communicate. Ido hopes that someday he’ll be able to teach other autistic kids to use letterboards and iPads, giving them the same gift of communication that he has enjoyed. In doing so, he’ll be able to prove to the world that autistic kids are not retarded – they’ve merely been denied the ability to express themselves.

Autism is not Asperger’s

The common wisdom these days is that autism comes in many degrees and we refer to the milder, high-functioning variants as Asperger’s. Ido tells us that this is not how it works. Someone with Asperger’s would typically find it difficult to relate to “normal” people and express emotions in a way other people can understand. A mild case might have difficulty getting along with highly emotional people, might be seen as “weird” in their youth, and might retreat into hobbies and jobs where meticulous organization of details is heavily rewarded. A more severe case might find it very hard to relate to anyone and might have to be taught by rote memorization to understand people’s facial expressions and body language.

Ido explains that his condition is nothing like that. He has no trouble understanding most people’s behavior, but finds it incredibly hard to control his body. Asperger’s people have no trouble controlling their bodies, but have lots of trouble understanding people. Ido concludes that Asperger’s is not a mild form of autism, and autism is not a severe form of Asperger’s.

Stimming

Ido writes at great length about “stimming”, or the repetitive behaviors associated with autism. Ido often will make annoying noises or flap his hands. If an adult tries to make him stop, he may respond by doing it more. After reading the book, I can understand why.

If you’ve ever had the compulsion to pick at your nails, or pick at a zit, or pull your hair, you’ll know that brief moment of euphoria you get when you finally pick off that one zit that’s been frustrating you for a while. Multiply that feeling by about a million, and that’s what Ido feels when he gets the compulsion to flap his hands and then gives in to it. Ido describes a swirl of euphoric feelings, bright lights and colors, and the way these images and sensations serve to remove him from reality. This sounds like it would be appealing enough to a healthy person, and Ido has all the more reason to escape reality this way.

Most zit-pickers will pick harder when they’re nervous, or stressed, or sleep deprived-- you can usually tell their current mental state by how ragged their skin is. Ido will also stim more when distressed. If he’s frustrated by yet another “expert” telling his parents something he knows is not true, and he can’t speak up to correct it, he’ll start stimming. No doubt this frustrates his parents, maybe even makes them more sympathetic to whatever hopeless story the expert is telling them.

Ido tells us many times about how he tries really hard to stim less. He understands the way it makes those around him uncomfortable. As mentioned earlier, a zit-picker may give in to his compulsion for the high it provides but will regret it moments later when he has to run to the bathroom to deal with his bleeding face. Ido is making progress, in part because his life has improved in the last few years and he’s under less stress. Still, when frustration arrives (and it often does), he can’t help himself. After reading his book, I understand why.

Ido describes several weird behaviors characteristic of autism. He might be instructed to go to the dining room, but he’ll walk to his bedroom instead. He might be eating with his family and grab someone else’s water glass instead of his own. He might be asked to bring a Coke and come back with a Sprite. I’ve already explained how these behaviors have led experts to draw the wrong conclusions about his mental capacity, but my point here is a different one.

To explain it, I’ll first need to show you what I mean by a brain’s autopilot. Many people have had an experience where they’re driving home, following a route they’ve driven hundreds of times before, and a passenger engages them in conversation. They become engrossed in it, completely forgetting to pay attention to their driving, and yet they continue to drive normally. When this person arrives at home, he might think back and realize that he has no memory of the drive. His conscious mind was completely focused on the conversation, which he can recall in great detail. Since he continued to drive normally and followed all the rules of the road, one might wonder who exactly was driving the car.

There’s a part of the brain most of us have that can repeat tasks we’re intimately familiar with, freeing up our conscious mind to focus on something else. One telltale sign that your autopilot did a task is if you finish it perfectly, and immediately realize that you have no memory of doing it.

Now let’s consider a few examples where the autopilot might screw up. Maybe you’re eating dinner with your family and you’re completely focused on the conversation, so you take a sip of water from your neighbor’s glass instead of your own. Or maybe you’re engrossed in thought and someone tells you to go to the kitchen. Instead, you walk to the room you’re most familiar with: your bedroom. When you arrive, the surprise jolts you out of your stupor and you wonder how the heck that happened. Or you come home from work, go to the fridge for a beer while your thoughts are still on work, and put your car keys in the fridge. You will later spend hours searching the entire house for those keys because, if you recall, the telltale sign of running on autopilot is having no memory of what you did. Or maybe you’re baking a cake while talking with a friend. You’re mostly focused on the discussion, so you go to the pantry to grab the box of flour and come back with a box of cheerios that had about the same size and shape. If you’re really absent-minded, you might dump the cheerios into your cake mix and keep going like nothing happened.

When someone sees you make one of these errors, they might tell you to focus more on what you’re doing -- in other words, to disengage your autopilot and use your conscious mind to work on the task. Provided that we’re undistracted, most of us can do this easily. But I wonder if one of Ido’s challenges is that his autopilot won’t disengage and won’t allow his conscious mind to control his body. Think back to the kinds of errors he often makes: grabbing someone else’s drink; walking to the wrong room; trying to grab a box from the pantry and ending up with the wrong one. These sound very much like the kinds of mistakes most of us make on autopilot, except he makes them while his conscious mind is very present, screaming fruitlessly at his body that it’s doing the wrong thing.

I’m not yet sure what this means, but I found it interesting.