The Autistic Brain: Thinking Across the Spectrum (10 page)

But what if children with risk genes experienced parental affirmation or otherwise healthy home lives instead of bad environments? While research was persuasive that negative environments tended to lead to negative behavior in people who had this variation of the DRD4 gene, what if that same research also contained data indicating that
positive
environments tended to lead to
positive
behavior—but because the researchers were trying to measure negative effects, they didn’t ask the right questions?

Fortunately, other researchers did eventually think to ask.
Once they began conducting studies specifically looking for positive effects—and reanalyzing older studies of negative effects—investigators realized that they needed to rethink how science saw these gene variations. People with these gene variations are simply more sensitive to their environments—“for better or worse,” as one researcher said. You could think of them
as “orchid children,” because they easily flourish or wilt depending on whether the hothouse environment they inhabit is conducive to growth or not. By contrast, “dandelion children,” who carry the regular version of the gene, fare just about the same no matter where they grow.

Under this new understanding of how the 7R version of DRD4 works, geneticists have begun referring to it not so much as a risk gene but as a
responsiveness
gene. Nature made it neutral. Nurture makes it positive or negative.

You might wonder if this interpretation means that Leo Kanner was right about the negative influence of negative parenting. Not quite. Kanner was drawing a one-to-one correspondence between a refrigerator parent and autism in the child. Bruno Bettelheim’s version of Kanner’s model at least considered the possibility of a genetic component—a genetic predisposition toward autism that needed an abusive parent in order to become manifest. But neither Kanner nor Bettelheim seems to have considered autism to be the result of genetic predetermination, rather than predisposition.

But you know who did? Despite all the discredited psychoanalytic associations embedded in Kanner’s and Bettelheim’s assumptions and hypotheses, the answer is Sigmund Freud—sort of.

Freud’s medical background was in neurobiology and neuroanatomy. He always argued that his psychoanalytic concepts were placeholders until science could do better. “We must recollect that all of our provisional ideas in psychology will presumably one day be based on an organic substructure,” he wrote
in 1914. Six years later he continued that thought. “The deficiencies in our description would probably vanish if we were already in a position to replace the psychological terms by physiological or chemical ones,” he wrote.
“We may expect [physiology and chemistry] to give the most surprising information and we cannot guess what answers it will return in a few dozen years of questions we have put to it. They may be of a kind that will blow away the whole of our artificial structure of hypothesis.”

The same is true today. Neuroimaging has allowed us to probe neuroanatomical features and ask the questions What does it look like? and What does it do? Genetics has allowed us to begin to answer the question How does the brain do what it does? While we have decades of progress ahead of us, we have at least begun to find a few of the answers that will complement a definition of autism that today is based purely on the observation of behaviors—a diagnostic method that, as we’ll see in the next chapter, comes with its own perils.

4

YOU KNOW WHAT I HATE?
The sound of hand dryers in public restrooms. Not so much when the air jet starts, but the moment someone’s hands enter the stream. The sudden drop in register drives me nuts. It’s like when the vacuum toilet on an airplane flushes. First comes the brief rainlike prelude, then a thunderclap of suction. I
hate
that.
Fingernails-on-a-chalkboard
hate.

You know what else I hate about air travel? The alarm that goes off when somebody in an airport accidentally opens a secure door. I hate alarms in general, for that matter. When I was a kid, the school bell made me absolutely crazy. It felt like a dentist’s drill. No exaggeration: The
sound
caused a sensation inside my skull like the pain from a dentist’s drill.

By now you’ve probably noticed a pattern in what I hate. I’m sensitive to sounds. Loud sounds. Sudden sounds. Worse yet, loud and sudden sounds I don’t expect. Worst of all, loud and sudden sounds I
do
expect but cannot control—a common problem in people with autism. Balloons terrified me as a child, because I didn’t know when they were going to pop.

Today I know that if I had been able to pop balloons myself, poking a small balloon with a pen and producing a soft sound, then working my way up to bigger and bigger balloons and louder and louder pops, I might have been able to tolerate balloons. I’ve heard a lot of people with autism say that if they can initiate the sound, they’re more likely to be able to tolerate it. The same is true if they know the sound is coming; fireworks set off at random by kids down the block are shocking, but fireworks set off at the city park as part of a holiday program are acceptable. But when I was a kid, the same balloon that delighted and excited the other kids, the balloon that they wanted to toss to one another or flick with their fingers until it scraped the ceiling, I watched with dread. It loomed for me like a cloud of potential pain.

Our five senses are how each of us understands everything that isn’t us. Sight, sound, smell, taste, and touch are the five ways—the
only
five ways—that the universe can communicate with us. In this way, our senses define reality for each of us. If your senses work normally, you can assume that your sensory reality is pretty similar to the sensory reality of everyone else whose senses are working normally. After all, our senses have evolved to capture a common reality—to allow us to receive and interpret, as reliably as possible, the information we need in order to survive.

But what if your senses don’t work normally? I don’t mean your eyeballs or eustachian tubes, the receptors on your tongue or in your nose or at the tips of your fingers. I mean your brain. What if you’re receiving the same sensory information as everyone else, but your brain is interpreting it differently? Then your experience of the world around you will be radically different from everyone else’s, maybe even painfully so. In that case, you would literally be living in an alternate reality—an alternate
sensory
reality.

I’ve been talking about sensory problems for as long as I’ve been giving lectures on autism, which is thirty years now. During that time, I’ve encountered people whose hearing fades in and out, so words go from sounding like a bad mobile phone connection to sounding like fireworks. I’ve talked to kids who hate to go into the gym because of the sound of the scoreboard buzzer. I’ve seen kids who can say only vowel sounds, possibly because they can’t hear consonants. Almost all these people are autistic, and in fact, about nine out of ten people with autism suffer from one or more sensory disorders.

But pain and confusion don’t affect just their lives. They also affect the lives of their loved ones. A normal child doesn’t need to be told that the nonverbal autistic sibling requires more attention from their parents—that in many ways, the world of the family revolves around that child. For parents, taking care of even a normal child can be something of a full-time job; taking care of a child whose brain can’t tolerate the motion of a parent crossing the room can be a full-
life
job. You can’t take a child shopping or out to a restaurant or to the big brother’s football game if the kid is going to be wailing in pain the whole time.

Besides, sensory disorders are not just an autism problem. Studies of nonautistic children have shown that more than half have a sensory symptom, that one in six has a sensory problem significant enough to affect his or her daily life, and that one in twenty should be formally diagnosed with sensory processing disorder, meaning that the sensory problems are chronic and disruptive. I myself have noticed that in a class I teach every semester, one or two of the sixty students have trouble drawing a cattle-handling system. They draw squiggly lines instead of smooth curves. I know they’re not autistic, and they don’t have astigmatism, but when I ask them what they see when they look at a page of print, they’ll tell me that the letters are jiggling.

Yet what do we know about the science of sensory problems? Surprisingly little. It was surprising to me, anyway, once I started looking into the research on sensory problems.

For all the research on the autistic brain that neuroscientists and geneticists are conducting, for all the breakthroughs they’re achieving, the subject of sensory problems is clearly not a priority. Sensory problems in people with autism are “ubiquitous,” as a 2011 review article
in
Pediatric Research
put it, yet the topic receives disproportionately little attention. Much of the research I found about sensory problems in autistics comes from nonautism journals, and many of those journals are not published in the United States. Even the articles on sensory problems in the autistic population that do appear in autism journals often go out of their way to bemoan the sorry state of research. “There is concern over the lack of systematical empirical research into sensory behaviors in ASD and confusion over the description and classification of sensory symptoms,” wrote the authors of one 2009 study,
while the authors of another study
that same year complained of a “dearth of information.” In 2011, I contributed an article to a big scholarly book
on autism. More than fourteen hundred pages. Eighty-one articles in all. Guess what. The only paper that addressed sensory problems was mine.

Over the decades, I’ve seen hundreds if not thousands of research papers on whether autistics have theory of mind—the ability to imagine oneself looking at the world from someone else’s point of view and have an appropriate emotional response. But I’ve seen far, far fewer studies on sensory problems—probably because they would require researchers to imagine themselves looking at the world through an autistic person’s jumble of neuron misfires. You could say they lack theory of
brain.

I suspect that they simply don’t understand the urgency of the problem. They can’t imagine a world where scratchy clothes make you feel as if you’re on fire, or where a siren sounds “like someone is drilling a hole into my skull,” as one autistic person described it.
Most researchers can’t imagine living a life in which every novel situation, threatening or not, is fueled by an adrenaline rush, as one study indicates
is the case in many people with autism. Because most researchers are normal human beings, they’re social creatures, so from their point of view, worrying about how to socialize autistics makes sense. Which it does, up to a point. But how can you socialize people who can’t tolerate the environment where they’re supposed to be social—who can’t practice recognizing the emotional meanings of facial expressions in social settings because they can’t go into a restaurant? Like other researchers, autism investigators want to solve the problems causing the most damage, but I don’t think they appreciate just how much damage sensory sensitivity can cause.

I’ve talked to researchers who even say that the sensory problems aren’t real. Hard to believe, I know. They call themselves strict behaviorists. I call them biology deniers. I tell them to consider this possibility: “Maybe that kid is freaking out in the middle of Walmart because he feels like he’s inside a speaker at a rock concert. Wouldn’t
you
be freaking out if you were inside a speaker at a rock concert?” I’ve had researchers then ask me, “If the kid is screaming because he’s sensitive to sounds, then shouldn’t
that
sound be bothering him?” Not if he’s sensitive to only certain kinds of sounds. Sometimes those particular sounds don’t even need to be loud in order to be annoying.

Not every person who suffers from a sensory disorder responds to a stimulus in the same way. I’ve seen children scream when a supermarket door opens swiftly, but I myself always found the movement of doors fascinating. One child will play with running water. Another will run away from a flushing toilet.

And not every person who suffers from a sensory disorder suffers to the same degree. I’ve learned to live with the sound of hands under air dryers or door alarms in airports. For some people, though, the sensory problems are debilitating. They can’t function in normal environments like offices and restaurants. Pain or confusion defines their lives.

But whatever form these sensory problems take, they’re real, they’re common, and they require attention. I’ve given them that attention—and what I’ve found has surprised me, shocked me, and even led me to question some of the basic assumptions about autism itself.

While autism experts by and large have neglected sensory problems as a subject for research, the fact is you can’t study autism without figuring out a way to categorize the sensory issues. I myself long ago accepted the traditional way of putting autistic people with sensory processing problems into three categories, or subtypes.

• Sensory seeking. This category covers problems that arise when the autistic person solicits sensations. Of course, we all seek sensations all the time.
  What does that cake taste like? How will that linen shirt feel? Can I hear what the people sitting behind me on the bus are saying?
  But autistic people with sensory problems tend to seek these sensations all the time. They can’t get enough of them. They might crave loud noises or, in my case, deep pressure. They often stimulate these sensations through rocking, twirling, hand-flapping, or noisemaking.
  

The other two categories are sort of the opposite of the first category. Rather than seeking sensations, the people in these two categories are responding to unsolicited sensations.

• Sensory overresponsiveness. People with this are overly sensitive to input. They can’t stand the smell of the pasta sauce, or they can’t sit in a noisy restaurant or wear certain kinds of clothing or eat certain foods.
  
• Sensory underresponsiveness. People with this show poor or no response to common stimuli. For instance, they might not respond to their names, even though their hearing is okay, or they might not react to pain.