In his State of the Union address on February 12, the president mentioned neuroscience as a priority, and the Obama administration recently launched a “human brain mapping project” akin to the Human Genome Project. Grandin suggests that such research should be guided in part from the experiences of those with neuropsychiatric conditions:
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 through someone else’s point of view and to 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.
…When I look back on where autism was sixty years ago, when my autistic brain was creating great anxiety in Mother, curiosity in doctors, and a challenge to my nanny and teachers, I know that trying to imagine where we’ll be sixty years from now is a fool’s errand. But I have confidence that whatever the thinking about autism is, it will incorporate a need to consider it brain by brain, DNA strand by DNA strand, trait by trait, strength by strength, and, maybe most important of all, individual by individual.
Grandin does not merely discuss science in The Autistic Brain, but offers counsel to families whose children behave in trying ways. She is particularly concerned about the affixation of labels and generic advice, which has evolved from Mrs. L.’s “not college material” and placement in metal shop to clinical categories:
Parents come up to me all the time and say things like, “First my kid was diagnosed with high-end autism. Then he was diagnosed with ADHD [Attention Deficit Hyperactivity Disorder]. Then he was diagnosed with Asperger’s. What is he?”2
I understand their frustration. They’re at the mercy of a medical system that’s full of label-locked thinkers. But the parents are part of the system too. They’ll ask me, “What’s the single most important thing to do for an autistic kid?” Or “What do I do about a kid who misbehaves?” What does that even mean?
I call this kind of thinking label-locked because people get so invested in what the word for the thing is that they no longer see the thing itself.
These labels are devised by the expert committees that issue the Diagnostic and Statistical Manual of Mental Disorders (DSM), the standard guide used by psychiatrists, psychologists, and many others. In May, the new criteria of the DSM-5 will be codified, and Grandin minces no words in her displeasure with the draft:
In the DSM-IV, a diagnosis of autism depended on three criteria, called the triad model. Those criteria were:
• Impairment in social interaction.
• Impairment in social communication.
• Restricted, repetitive and stereotyped patterns of behavior, interests, and activities.
Now, in the recently released DSM-5, there is a dyad:
• Persistent deficits in social communication and social interaction.
• Restricted, repetitive patterns of behavior, interests, or activities.
…What isn’t scientific about the DSM-5’s handling of the diagnostic criteria, however, is collapsing together social interaction and social communication. Social interaction covers nonverbal behavior that involves being with another person—making eye contact, smiling, and so on. Social communication covers the verbal or nonverbal ability to converse—sharing ideas and interests, for example. Do impairments in social communication and impairments in social interaction actually belong to one single domain? Does an inability to get words out and master grammar and syntax…really come from the same place in the brain as a tendency to speak with abnormal intonation and give conversational responses that are socially inappropriate…? Are language mechanics and social awareness closely related, neurologically speaking? I doubt it—and I’m not alone in that doubt.
The change in criteria is not merely a nosological issue but has profound sociological consequences:
What about the previously undiagnosed Aspies [those with Asperger’s Syndrome] who meet only the social half of the new dyad criteria—deficits in social communication and interaction but not in repetitive behaviors and fixated interests? They’ll find themselves in another subcategory altogether: communication disorder. Specifically, they’ll find themselves receiving a diagnosis that’s new to the DSM: social communication disorder. Which is, basically, autism without the repetitive behaviors and fixated interests. Which is, basically, rubbish. (To my way of thinking, social impairments are the very core of autism—more so than the repetitive behaviors.) So having the diagnosis of social impairments that’s distinct from the diagnosis of autism is the same as having a diagnosis of autism that’s distinct from the diagnosis of autism!
…Second, these diagnoses overlook the gifted but frustrated—the typical Aspie or high-functioning autistic who is laboring in a non-sympathetic environment. Consider the oppositional defiant disorder diagnosis: “The disturbance in behavior causes clinically significant impairment in social, educational, or vocational activities.” I guarantee you that if you take a third-grader who can read high-school math texts and make him do baby-math drills over and over and over, he will turn oppositional defiant—because he’s bored out of his mind.
…What practical effects will these diagnostic changes have? Will people who were labeled Asperger’s and are now labeled autistics experience a different response from the world? From themselves? How will these changes affect insurance coverage? What about social services? Autistics have more problems than those with Asperger’s; will they still get the same range of help as before? That question will be decided on a state-by-state basis, but these changes have opened a Pandora’s box of possibilities.
A leading child psychiatrist told me that he was critical of parents who contend that schools should be responsive to different types of children and that they should be flexible enough to accommodate both those who persistently tackle a project and those who refrain from participating in a group activity. For that psychiatrist, such views reflect the narcissism of modern mothers and fathers.3 To be sure, there cannot be an infinite number of options offered during the class day, and all of us must learn to modify our behavior to conform to social norms. Grandin is clear about the need for high-functioning autistics like herself to learn how to respect certain social imperatives. But unforgiving and rigid environments that provide no place for individual interests and energy can snuff out a person’s future.
Grandin argues that society largely functions based on self-interest, and “Aspies” may make unique contributions. She cites “all the undiagnosed Asperger’s cases in Silicon Valley.”
Being on the spectrum isn’t what defines them. Their jobs define them. (That’s why I call them Happy Aspies.)
Some people, of course, will never have that opportunity. Their difficulties are too severe for them to cope without constant care, no matter how hard we try.
But what about those who can cope? And what about those who can’t cope but who can lead more productive lives if we can identify and cultivate their strengths? How can we turn the plasticity of the brain to our advantage?
…By cultivating the autistic mind on a brain-by-brain, strength-by-strength basis, we can reconceive autistic teens and adults in jobs and internships not as charity cases but as valuable, even essential, contributors to society.
The Autistic Brain convincingly speaks to a nuanced understanding of people with autism, and the imperative of situating each person in as productive an environment as possible. The need is hardly small, in view of recent surveys from the Centers for Disease Control estimating one in 50–80 children are “on the spectrum of autism.”4
2 Asperger’s Syndrome, as a recent summary put it, differs from some other disorders in the autism spectrum by its “relative preservation of linguistic and cognitive development.” ↩
3 See my “The Doubting Disease: When Is Obsession a Sickness?” The New Yorker, April 10, 2000, and “What’s Normal? The Difficulty of Diagnosing Bipolar Disorder in Children,” The New Yorker, April 9, 2007. ↩
4 See Stephen J. Blumberg et al., “Changes in Prevalence of Parent-Reported Autism Spectrum Disorder in School-Aged US Children, 2007 to 2011–2012,” National Health Statistics Reports, No. 65 (March 20, 2013); and Jan Hoffman, “Parental Study Shows Rise in Autism Spectrum Cases,” The New York Times, March 21, 2013. ↩
Asperger’s Syndrome, as a recent summary put it, differs from some other disorders in the autism spectrum by its “relative preservation of linguistic and cognitive development.” ↩
See my “The Doubting Disease: When Is Obsession a Sickness?” The New Yorker, April 10, 2000, and “What’s Normal? The Difficulty of Diagnosing Bipolar Disorder in Children,” The New Yorker, April 9, 2007. ↩
See Stephen J. Blumberg et al., “Changes in Prevalence of Parent-Reported Autism Spectrum Disorder in School-Aged US Children, 2007 to 2011–2012,” National Health Statistics Reports, No. 65 (March 20, 2013); and Jan Hoffman, “Parental Study Shows Rise in Autism Spectrum Cases,” The New York Times, March 21, 2013. ↩