The Autistic Brain: Thinking Across the Spectrum (11 page)

These three subtypes make a lot of sense. I never thought to question them. You see autistic people with sensory processing problems, and you can fit them into one category or another.

But some scientists have started rethinking these categories. In 2010, Alison Lane of Ohio State University as well as three collaborators published a paper
titled “Sensory Processing Subtypes in Autism: Association with Adaptive Behaviors” in the
Journal of Autism Developmental Disorders.
(
Good,
I thought.
An article about sensory problems that’s actually in an autism journal.
) As usual in papers about sensory processing, these authors were quick to point out how neglected their subject was: “Few studies have sought to investigate the relationship between SP [sensory processing] difficulties and the clinical manifestations of ASD.” Then they got down to business.

The authors collected their data in the usual way. They relied on results from the Short Sensory Profile, a research tool that dates to the 1990s. Observers (usually parents) of people with sensory problems select which of thirty-eight behaviors match the behaviors of the subject. These behaviors correspond to seven sensory domains: tactile sensitivity; taste/smell sensitivity; movement sensitivity; underresponsive/seeks sensation; auditory filtering; low energy/weak; visual/auditory sensitivity. One indicator of tactile sensitivity, for instance, would be “Reacts emotionally or aggressively to touch.” An item indicating movement sensitivity is “Fears falling or heights.” Or under the heading of auditory filtering: “Is distracted or has trouble functioning if there is a lot of noise around.”

After collecting the usual data, however, Lane and her collaborators subjected it to a different model of statistical analysis and discovered that sensory issues then fell into three slightly different categories. I don’t need to go into the details of their methodology; you can look it up, if you’re interested. Briefly, the new categories are:

• Sensory seeking, leading to inattentive or overfocused behavior.
  
• Sensory modulation (through either underresponsiveness or overresponsiveness) with movement sensitivity and low muscle tone.
  
• Sensory modulation (through either underresponsiveness or overresponsiveness) with extreme taste/smell sensitivity.
  

These categories, too, make a lot of sense at first. Extreme taste/smell sensitivity? I’d never thought of it as being separate from the other sensory problems, but sure, I could see the usefulness of framing a category that way. Low muscle tone? I’ve certainly met a lot of autistic people with floppy limbs and pasty skin. “[This] subgroup is particularly important to physical therapists,” said a 2011 article
in
Physical Therapy
that drew on Lane’s research. “Children with ASDs who have atypical movement sensitivity usually are overresponsive to proprioceptive and vestibular input”—the sense of how the parts of the body work together and the sense of balance, respectively—“whereas children with low energy and weak motor responses have poor fine and gross motor skills.”

Still, the idea that you could take the same data and create two different ways of organizing it—two different sets of categories—bothered me. Can both ways be valid? Can neither way be valid? What are these categories even telling us?

Then I realized: The problem isn’t which way you interpret the data. The problem is the data itself.

Studies of severe sensory problems rely on the testimony of parents or caregivers. The conclusions in those studies rely on the methodology of the researchers. But why should we assume that all these interpretations reflect what’s happening to the subjects themselves? A person who can’t imagine living in a world of sensory overload is very possibly going to underestimate the severity of someone else’s sensations and the impact on that person’s life, and even misinterpret behavior as a sign of one sensory problem when it might be another.

If researchers want to know what it’s like to be one of the many, many people who live in an alternate sensory reality, they’re going to have to ask them.

Researchers routinely disparage self-reports, saying they’re not open to scientific verification because they’re subjective. But that’s the point. Objective observation of behaviors can provide important information. But the person suffering from sensory overload is the only one who can tell us what it’s really like. In my previous books, I’ve tried to describe my sensory problems, and other high-functioning autistics have also been able to describe the impact of sensory problems on their lives. But what about persons with far more severe, even debilitating sensory issues?

The problem in eliciting self-reports from this population is obvious. If a sensory problem totally disorganizes a person’s way of thinking, then he’ll have trouble describing the problem. If a person is nonverbal, then another means of expression, like typing or pointing, has to be used. In the most extreme cases, however, even that goal would be unrealistic. And unfortunately, wrist-supported writing produces unreliable information; the facilitator might be moving the hand without realizing it, as one would with the planchette on a Ouija board.

But overcoming the problems inherent in self-reporting is important. If the only self-reports about sensory issues that researchers have are from high-functioning adults, then the results are not representative. Sensory problems might be worse at lower levels of functioning; they might even be the
cause
of low levels of functioning. So a study that quotes only high-functioning autistics would present a wildly skewed view of the population. What’s more, by adulthood, a person can develop coping mechanisms that disguise the true severity of the sensory problems and might not reflect the reality of the same problem as experienced by a frightened child.

I’m hoping that some of the new technologies might allow for a higher incidence of self-reporting. Tablets, for example, have a tremendous advantage over plain old computers, even laptops: You don’t have to take your eyes off the screen. Usually typing is a two-step process. First you look at the keyboard, then you look at the screen to see what you’ve typed. That could be one step too many for someone with severe cognitive problems. Before tablets, a therapist would have to mount the keyboard of a desktop computer on a box so that it was right below where the print was appearing on the screen. In tablets, however, the keyboard is actually part of the screen, so eye movement from keyboard to the letter being typed is minimal. Cause and effect have a much clearer correlation. That difference could well be meaningful in terms of allowing people with extreme sensory problems to tell us what it’s like to be them.

In the meantime, we have to rely on two self-reports from nonverbal individuals who can type. They’re the only two who I can be sure are the authors of their words. I’ve examined both cases with an eye toward discovering what their sensory reality is like.

In his book
How Can I Talk If My Lips Don’t Move? Inside My Autistic Mind,
Tito Rajarshi Mukhopadhyay describes his liberation from a locked-in autistic existence. It came in the form of a board filled with numbers and letters that his mother provided for him before he was four years old, in the early 1990s. With her help, he learned math and spelling. Eventually his mother tied a pen to his hand so that he could communicate through writing. Over the years Tito has published several books that describe how he experiences his reality in two parts: an “acting self” and a “thinking self.” I recently looked back over his writing, and I recalled the first time I met him. And I understood that although I didn’t realize it at the time, I had gotten to see both the acting self and the thinking self in very rapid succession.

I met Tito in a medical library in San Francisco. The lighting was low; if the library had any fluorescent lights, they had been turned off in anticipation of our visit. The room was silent, the atmosphere serene—free of distractions. The conversation involved just Tito, me, and his keyboard.

I showed him a painting of an astronaut riding a horse. I had deliberately chosen an image that he wouldn’t have seen before—in this case, an advertisement for a technology company that I found in an old issue of
Scientific American
I’d grabbed off a nearby shelf. I wanted to see how he expressed himself in words. He studied the picture, and then he turned to his keyboard.

Apollo 11 on a horse,
he typed rapidly.

Then he ran around the library flapping his arms.

When he returned to the keyboard, I showed him a picture of a cow.

We don’t eat those in India,
he typed.
⁵

Then he ran around the library flapping his arms.

I asked him another question, but I no longer remember what it was. Still, you know what happened next. Tito answered it, and then he ran around the library flapping his arms.

And that was it for the conversation. Tito had done as much writing as he could in one session. He needed to rest, because even answering three short questions required tremendous effort.

What I had witnessed, I realize now, is Tito’s acting self in action, the self that the outside world sees: a spinning, flailing, flapping boy. Which is also the self that Tito sees.

In his book, he described his acting self as “weird and full of actions.” He saw himself as pieces, “as a hand or as a leg,” and he said the reason he spun himself in circles was so that he could “assemble his parts to the whole.” He recalled staring at himself in a mirror, trying to force his mouth to move. “All his image did was stare back,” Tito wrote, adopting a third-person point of view that only underscored the disconnect between his acting self and his thinking self.

That
self, his thinking self, is “filled with learnings and feelings.” And frustrations. He recalled a doctor telling his parents that Tito couldn’t understand what was happening around him, and he remembered his thinking self’s unspoken response: “‘I understand very well,’ said the spirit in the boy.”

The acting self runs around a library flapping his arms. The thinking self observes the acting self running around a library flapping his arms.

For me, the idea of two selves is reinforced by what Carly Fleischmann describes in her 2012 book
Carly’s Voice: Breaking Through Autism,
which she wrote with her father, Arthur Fleischmann. For the first ten years of her life, Carly appeared to be a nonverbal autistic. Then one day she shocked her parents and her caregivers by suddenly working the keyboard on her voice output device. Prior to this eventful afternoon, Carly had used the device for one thing: she would touch the picture of an object or activity, and the electronic voice would speak the corresponding words. In fact, that very afternoon one of her therapists had been deleting items from the device in order to free up memory, and he had considered clearing the alphabet function. Fortunately, he didn’t get around to it.

That day, when Carly arrived for her lessons, she was unusually restless and cranky and overall uncooperative. “What do you want?” one of the therapists asked her in exasperation, as if Carly were actually capable of answering. And she was! Carly grabbed the voice output device. “H-E-L-P T-E-E-T-H H-U-R-T,” she typed, laboriously.

Carly was extremely low functioning. Like Tito, her acting self was in constant motion, sitting and rocking, screaming, trying to destroy everything within reach. Like Tito, her thinking self was taking in a lot more information than anyone would have thought. On some levels, her inner life was surprisingly normal. As Carly entered her teens, she developed what you might call typical teenage-girl interests. She had crushes on Justin Timberlake and Brad Pitt. When she appeared on a TV show, she found herself concentrating on a cute cameraman. But on other levels, her inner life was complicated in ways only she could know.

In one particularly striking scene in
Carly’s Voice,
she invited her readers to imagine having a conversation in a coffee shop. If you’re like most people, you would imagine yourself sitting across a table from someone who is talking to you, and you would imagine yourself listening closely.

Not Carly.

For me that is a different case altogether. The woman who brushes along our table leaves an overpowering scent of perfume and my focus moves. Then the conversation over my left shoulder from the table behind us comes into play. The rough side on my left sleeve cuff rubs up and down on my body. That starts to get my attention, as the whoosh and whistle of the coffee maker blends into different sounds all around me. The visual of the door opening and shutting in the front of the store completely consumes me. I have lost the conversation, missing most of what the person in front of me is talking about. . . . I find myself only hearing the odd word.

At this point in the doomed conversation, Carly said, she would behave in one of two ways. Either she would shut down and become nonresponsive, or she would have a temper tantrum.

Now that’s interesting,
I thought when I read this passage. Imagine you’re the person sitting across from her, and you have to describe her behavior for the sensory profile. If Carly shuts down—if she seems not to be listening to you, even though you’re sitting directly in front of her, talking directly to her—you would categorize her as underresponsive. But if she throws a temper tantrum—if, as Carly said, she started “to laugh or cry or get mad or even scream for no reason you can pinpoint”—you would categorize her as overresponsive.

Two different behaviors, two different sensory-profile subtypes—at least, so it would seem if you were sitting across from her, watching her from the outside. But if you were Carly, living your life from the inside, the two reactions would have the same cause: sensory overload.
Too much information.

Tito offered a similar scenario in his book. He described entering a room he had never entered before: He looks around, turning to different parts of the room, until he sees an object that intrigues him.