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Authors: Temple Grandin,Richard Panek

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“The first thing I see is its color,” he wrote. “If I do not get into a deeper cogitation of its color by defining it as ‘yellow,’ and mentally lining up all the yellow things I know of, including one of my yellow tennis balls when I was seven years old, I move to the shape” of the object. The object has a hinge, which he might or might not notice. But if he does notice it, then:

 

I might get distracted by the functions of levers. However, I pull my attention from there and wonder about the function of that yellow, large rectangular object, with levers of the first order, called a hinge.

Why is that yellow, large rectangular object with levers there? I mentally answer the question, “It has allowed me to come inside that room, and can be opened or closed. And what else can that be, other than a door.” My labeling is complete.

 

And then he moves on to the next object in the room.

Tito also wrote about visiting a house and becoming lost in a magazine. He loved turning and touching “those smooth glossy pages,” and he loved sniffing them too. Only afterward, when his mother discussed the visit and mentioned the pink roses on the lace curtains, and the piano, and a picture in a silver frame, did Tito realize that he had been so intent on the magazine, he’d missed everything else in the room.

From the outside, his behaviors in the two situations would seem different. Standing still, staring at the door, Tito would look as if he were underfocused, unengaged. Sniffing the magazine, he would look as if he were overfocused, too engaged. But, as with Carly in the coffee shop, even though the observable behaviors are different, the feelings behind them are the same.

These self-reports reinforce my longstanding hypothesis that some nonverbal autistics might be far more engaged in the world than they seem to be. They just happen to be living in such an extraordinary jumble of sensations that they have no way of productively experiencing the outside world, let alone expressing their relationship to it.

But these self-reports also demonstrate that Tito and Carly observe their own behaviors as closely as a parent or caregiver or researcher. Unlike those outside observers, however, they can tell us what their behaviors actually mean. The difference between the observer’s view and the subject’s experience—between the acting self and the thinking self—is the difference between what sensory problems
look like
and what they
feel like.

I asked myself about my own experience with hearing difficulties as a child, when I would try to make sense out of the babble of adult voices talking too fast for me to follow. My hearing had two settings: Off, and Let All the Stimulation In. Sometimes I would shut down and block out all the stimuli. Sometimes I would throw a tantrum. Two behaviors, one feeling.

In the “Sensory Processing Subtypes” paper I mentioned earlier—the one that suggested a different way of organizing sensory problems—the authors noted that underresponsiveness and overresponsiveness “may co-exist” in the same child. Based on these examples, I would go further. If
responsiveness
refers to the visible response that a parent or caregiver or researcher observes, then fine—you can make a distinction. From an outside point of view, the child is underresponding or overresponding, underfocusing or overfocusing. The acting self exhibits two distinct types of behaviors. But if
responsiveness
refers to what the thinking self with the sensory problem is experiencing, then no—the distinction is meaningless. Underresponsiveness and overresponsiveness, or underfocusing and overfocusing, might be
the same thing.

Does this possibility have any foundation in fact? I think it does.

I found anecdotal evidence in numerous descriptions in online self-reports that sounded similar to Carly’s.

 

  • “When lots of people are talking around me, at the same time, such as in a pub, I get overwhelmed and start to zone out, and can’t make sense of any of it.”
  • “I just shut down and can’t feel or react, so I usually just stand/sit absolutely still and stare very hard at something. Sometimes my mind is racing and that’s very difficult to pull back.”
  • “I just need to sit quietly and refocus.”
  • “I often just become catatonic, with a stoic expression.”
  • “Your eyes try to go to every movement they perceive. That is part of what destroys your eye contact and makes you seem very inattentive.”

 

What about scientific support? I found two papers hypothesizing that both underfocusing and overfocusing are caused by overstimulation. One paper,
published in
Frontiers in Neuroscience
in 2007, proposed that autistics with sensory problems suffered from what the authors called “intense world syndrome.” The authors wrote that “excessive neuronal processing may render the world painfully intense.” To which the brain’s response might be “to rapidly lock down the individual into a small repertoire of secure behavioral routines that are obsessively repeated.” Another paper,
published in
Neuroscience and Biobehavioral Reviews
in 2009, said that people with autism might be living in what the authors called “a world changing too fast.” They can’t follow what’s happening around them, so they withdraw from their surroundings.

In either case, the lesson isn’t that some people with autism receive too much information and are therefore overresponsive while other people with autism receive too little information and are therefore underresponsive. The lesson is that if your brain receives too much sensory information, your acting self might easily
look
underresponsive but your thinking self would
feel
overwhelmed.

The “World Changing Too Fast” paper offered several real-life examples from adults with autism, including one from me. I’ve postulated that the common autistic symptom of averting one’s eyes “may be nothing more than intolerance for the movement of the other person’s eyes.” I’ve asked kids, “Why do you look out of the corner of your eyes?” They say, “Because I can see better that way.” As for why they can see better that way, I don’t know. Because the world is moving too fast and a sidelong glance makes all the motion less overwhelming? Maybe. I like that hypothesis, but without further research, that’s all it is—a hypothesis.

I myself have been guilty of moving too fast for other autistic people. Daniel Tammet wrote that when he and I met, I quizzed him too quickly: “She spoke very fast, and I found it difficult to follow her.” The autistic author Donna Williams wrote that “the constant change of most things never seemed to give me any chance to prepare myself for them.” That’s why, she said, she’d always loved the saying “Stop the world, I want to get off.”

Or if not
stop
the world, at least slow it down. “The stress of trying to catch up and keep up,” Williams wrote, “often became too much and I found myself trying to slow everything down and take some time out.” One method she developed of slowing down the world was to rapidly blink her eyes or turn the lights on and off: “If you blinked really fast, people behaved like in old frame-by-frame movies, like the effect of strobe lights without the control being taken out of your hands.” J.G.T. van Dalen, an adult with mild autism, was quoted in the “World Changing Too Fast” paper as saying he is “constrained to digest each object piece by piece.” For him, this period of extraordinary focus doesn’t feel normal. “Time seems to flow out rapidly,” he said. For an observer, this period doesn’t look normal either. The difference, he said, was that “a nonautistic person sees me as living slowly.”

In each of these cases, the acting person would
look
slow to an observer. But the thinking person would
feel
the opposite.

The idea that hyperreactivity and hyporeactivity might be two sides of the same coin carries several important implications.

One is pharmacological. “While most [of] the commonly prescribed medication [tries] to increase neuronal and cognitive functioning, we conclude that the autistic brain needs to be calmed down,” the “Intense World” authors wrote, “and cognitive functions need to be diminished in order to re-instate proper functionality.” In my own experience, I found that when I began taking antidepressants to manage my anxiety—old-fashioned antidepressants like Zoloft and Prozac—the drugs calmed me down enough so I could learn social behaviors. And studies have shown that although risperidone (brand name Risperdal), an antipsychotic drug, doesn’t directly affect the core deficit of social impairment, it does reduce the irritability that causes aggression. But I think it might also indirectly help overcome social impairment, because if you can manage the maladaptive behaviors, you at least have a chance to engage in the world in a more socially productive fashion.
6
(As always with prescription drugs, don’t do anything without first consulting a doctor. And medication has to be dispensed very carefully; kids especially are sometimes accidentally overdosed.)

Another implication is educational. One of the common symptoms among persons with autism is a supposed inability to understand facial expressions. Yet a series of studies in the 1990s found that if children with ASDs watched facial expressions displayed slowly on video, they understood them equally as well as neurotypical children of the same developmental age. The “World Changing Too Fast” authors developed software that slowed down the presentation of visual and auditory cues. When ASD subjects were exposed to these gestures and sounds, they began imitating them, while normal subjects did not respond to the prompts because they’d long ago internalized these behaviors. Similarly, when these researchers slowed down spoken sentences, they found that ASD subjects experienced an increased understanding of meaning.

The idea that hyperreactivity and hyporeactivity are two variations on a theme might even have implications for theory of mind. The “Intense World” paper proposed that if the amygdala, which is associated with emotional responses, including fear, is affected by sensory overload, then certain responses that look antisocial actually aren’t. “Impaired social interactions and withdrawal may not be the result of a lack of compassion, incapability to put oneself into someone else’s position or lack of emotionality, but quite to the contrary a result of an intensely if not painfully aversively perceived environment.” Behavior that looks antisocial to an outsider might actually be an expression of fear.

Because dividing sensory problems into three subtypes now strikes me as an unreliable strategy, I’m going to do what I always do when I don’t know enough about a topic. I ask myself, What
do
I know? And what I know about sensory problems is that we have five senses. So I’m going to arrange my discussion of sensory problems according to each one. (For ways to identify these symptoms and for practical tips to alleviate them, see the sidebar at the end of this chapter.)

 

Visual-Processing Problems

 

My visual processing is, if anything, superior to others’, though I don’t know whether that’s due to how my eyes work or to how my brain interprets the signals that my eyes send. Nonetheless, I can say that at the age of sixty-five, I can still read a newspaper without glasses (though menus in dark restaurants and business cards with tiny print have started giving me some trouble). When I’m bored at a conference, I distract myself by looking at the fibers in the carpet. My night vision is so good that sometimes I forget to turn on the headlights.

Which is not to say
I don’t have some visual sensitivity. When I get tired, I’ll start to see a halo around the light on a streetlamp or the flicker on an old TV-type computer screen. When I switch lanes on the highway, I have to make extra sure that I’ve left myself enough space. If a doctor asks me to hold my head still and follow a pen with my eyes, I hate it. Therapists tell me that my eyes jerk and I can’t track smoothly.

At the other extreme are visual problems like the kind that author Donna Williams, who is autistic, described in her writing
: “Light refraction, i.e. shine, is a visual equivalent of noise reverberation and is a major source of visual overload. For someone sensitive to these things, the shine, or light refraction, can cause a visual effect of shooting out streams of sparks of light. This distracts from paying attention to other things, but this shine can also have the visual effect of cutting up people or objects.” Thomas McKean, an autistic champion of self-advocacy, described
this syndrome as Picasso vision, saying it was like “looking through broken glass or a cracked mirror.”

On a more everyday level, I often encounter students with Irlen syndrome—named for Helen Irlen, an American therapist who found that certain writing and reading problems could be reduced or eliminated through the use of colored paper or lenses.
7
The idea is that white paper overwhelms a visual system that is sensitive to brightness, whereas the wavelengths of light in colored paper or lenses soothe it.

Having a mild case of Irlen syndrome—for instance, the print on a page jiggles a little when you’re tired—isn’t going to affect your academic performance. Colored lenses might help your eyestrain the same way that the reduced contrast on an e-book reader does. But I’ve seen severe cases where Irlen syndrome definitely interfered with a student’s schoolwork—print was blurred, words moved, lines disappeared—and colored paper or lenses helped.

Sometimes I see students struggling with my design assignment. They may submit drawings that are full of wavy, squiggly lines instead of smooth arcs. I first suggest that they go to the counseling center, but sometimes, for whatever reason, they don’t want to do that. So, fine. In that case, I send them to the copy shop, and I tell them to photocopy pages from a book using paper in all the different pastel colors until they find the shade that helps them see better. It might be tan. It might be lavender. But one of the colors will work best.

I also send these students to the drugstore and tell them to try on sunglasses with lenses of various different colors, and the same principle applies there: You have to find the right color. “Don’t buy what looks good,” I tell them. “Buy what works.” One day a student who had picked out pink-tinted lenses came rushing up to me. “Oh, Dr. Grandin,” she said, all excited, “I got an A on my economics quiz!” Why? Because the PowerPoint slides stopped jiggling and she could finally read the numbers on the professor’s graphs. As I always tell my students, it would be stupid to flunk out of school because you’re not using tan paper or because you didn’t make your computer background lavender!

BOOK: The Autistic Brain: Thinking Across the Spectrum
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