The Autistic Brain: Thinking Across the Spectrum by Temple Grandin, Richard Panek Page A

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 articlein
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