I used to fantasize about becoming a wildly successful author or influential teacher; now I fantasize about having a map of my son’s body and brain, showing me the areas of hurt and how I can help. Gone are the phantom shelves of books I would have liked to write, the modestly tucked-away folder of imaginary teaching awards.
When I first knew that my son, now 3, was on the autism spectrum, I had hoped for the possibility of a high-functioning form, but that was before I learned he also has a rare form of epilepsy and a host of immunological problems. Now I just want him to be functioning—that is, alive and able to eat and walk and perhaps even improve over time.
Parents of children on the autism spectrum often talk about a number of comorbid conditions that can accompany the disorder—immunological dysfunctions, frequent ear infections, intractable strep, gastrointestinal disorders, rampant yeast, inexplicable regressions, allergies. I did not guess that my son would have all of those as well as epilepsy (there is an 11- to 39-percent overlap between the two conditions), or that our concerns over his seizure disorder would begin to trump our fears about everything else. I also did not realize that he was to have more than one regression, which would rob him of all of his hard-won language and communication skills, forcing him to retreat into a wordless and inaccessible world where I could not follow.
I put aside everything else to try to help him. I’ve taken time off from teaching to relearn the very process of learning. I don’t research Keatsian arcana anymore; instead, I am trying to learn the silent physical rhymes and looking-glass puns of sign language. “Stars,” for example, are inverted “socks.” “Number” is a dancing “more.” “Thank you” is just a touch away from “good.” “Sorry” is “please” closed up and hiding. Never, of course, has my research seemed more essential.
Are You on It? If So, You’re in Good Company. From Asperger’s to ‘Asperger’s,’ How the Spectrum Became Quite So All-Inclusive.
Is every man in America somewhere on it?” Nora Ephron wondered about the autism spectrum in an e-mail to a friend a few months before her death. “Is every producer on it? Is every 8-year-old boy who is obsessed with statistics on it? Sometimes, when we say someone is on the spectrum, do we just mean he’s a prick? Or a pathological narcissist? I notice that at least three times a week I am told (or I tell someone) that some man or other is on the spectrum.”
Ephron was hardly alone. In August, after a string of campaign-trail bloopers by Mitt Romney (e.g., at a New Hampshire parade, he described his lemonade as “lemon … wet … good”), noted diagnostician David Shuster, a television personality at Current TV, floated the idea that Romney might be on the spectrum. Shuster cited “an uncle who specializes in the field of Asperger’s”—a mild variant of autism—who had “suggested that perhaps Mitt Romney has some sort of form of Asperger’s because he’s so socially inept in terms of being able to connect with people. What he thinks is funny is really sort of not so funny. I sort of wonder if there’s some sort of tic or something that he has that’s related to that.”
Meanwhile, out on the Great Plains, one Dennis Stillings, writing in the Bismarck-based Dakota Beacon about Barack Obama, has adduced such telltale evidence as his “legendary clumsiness … He has actually bowled a 37,” “verbal glitches—possibly the reason for the ever-present teleprompters,” and “infamous inability to relate” to arrive at a boldly contrarian thesis: “Obama may well not be narcissistic at all, but simply manifesting a typical feature of autism.” Stillings then passes along the opinion of a friend of a friend “who actually works with autistic people” that the president of the United States “likely” has Asperger’s, and speculates that this “may or may not be of significance” to the Obama administration’s considerable funding of autism research.
Asperger syndrome and Aspies — the affectionate name that people diagnosed with Asperger syndrome call themselves — seem to be everywhere.
Considered to be at the high-functioning end of the autism spectrum, Asperger syndrome has become more loosely defined in the past 20 years, by both the mental health profession and by lay people, and in many instances is now synonymous with social and interpersonal disabilities. But people with social disabilities are not necessarily autistic, and giving them diagnoses on the autism spectrum often does a real disservice. An expert task force appointed by the American Psychiatric Association is now looking into the possibility of changing the way we diagnose Asperger. True autism reflects major problems with receptive language (the ability to comprehend sounds and words) and with expressive language. Pitch and tone of voice in autism are off-kilter. Language delays are common, and syntactic development is compromised; in addition, there can be repetitive motor movements.
Eventually, biological markers, now in the beginning stages of development, will help in separating autism-spectrum disorders from social disabilities. For example, researchers at the University of Pittsburgh Medical Center have recently developed three-dimensional brain scans that look at brain wiring. In preliminary studies people with autism-spectrum disorders appear to have too much wiring and disorganized wiring in areas involved with language acquisition.
Nevertheless, children and adults with significant interpersonal deficits are being lumped together with children and adults with language acquisition problems. Currently, with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers — but who have no language-acquisition problems — are placed on the autism spectrum.
In recent years speculation has abounded that Albert Einstein must have had Asperger syndrome. Christopher Hitchens speculated that his intellectual hero George Orwell must have had Asperger. Indeed, Orwell had major problems fitting in at British preparatory schools — not surprisingly, he hated the totalitarian tenor of teachers and school administrators — but someone on the autism spectrum could probably never have become a police officer in Lower Burma, as Orwell did. Similarly, writers like Charles Morris have noted that Warren Buffett is thought to have a condition on the autism spectrum, presumably Asperger syndrome.