I knew that there was something going on, that I wasn't responding to the world the way to their people did, and that other people didn't see the world the way I did. – Jared Stewart
Jared Stewart’s standard tongue-in-cheek explanation for his many eccentricities, even today, is that he was born on an island in Alaska. That is not an actual diagnosis, he admits, "but it should be."
For years, he had no idea what made him different. He just learned to live with it. It was only after graduating from college and launching his teaching career that he realized he was an Alaskan with Asperger’s.
Stewart had the American Psychiatric Association to thank for his epiphany. The APA had inserted Asperger’s into its diagnostic manual in 1994, in the version known as DSM-IV. Before that, his condition didn’t even “exist.”
But when DSM-V was launched last month after years of controversy, Asperger’s was conspicuously missing. Therapists using the new manual will have to plug their patient somewhere along the “autism spectrum.”
Some in the Asperger's community resent the change and resist being grouped with Autism generally. People with Asperger’s share many symptoms with classic autism, but they do not have language or other developmental challenges and are often of high intelligence.
Simply put, by the time the APA decided to nix the diagnosis, Asperger’s had cachet, while autism had stigma. The APA was hammered with opposition to the move. But others, including many in the Asperger’s community, see the change as appropriate, necessary, even liberating.
A crowded spectrum
That spectrum is getting comparatively crowded. The Centers for Disease Control reports that 2 percent of children by 2012 were reported by parents as having some form of autism, up from 1.16 percent in 2007. The CDC report postulates that most of the leap results from more aggressive diagnoses, and notes that much of the shift reflects milder cases — including Asperger’s. Those numbers should begin to diminish under the new, more restrictive regime.
When the psychiatric profession first recognized Asperger's syndrome in 1994, it placed it under a heading of Pervasive Developmental Disorders, generally known as "the autism spectrum." The other two disorders under the same grouping are classic Autism and "Pervasive Developmental Disorders Not Otherwise Specified.”
In the new manual, the label PDD-NOS no longer exists: all subcategories are now replaced by the “autism spectrum,” and somewhere along that spectrum are a wide range of challenges that have much in common but differ widely in details and degree of impairment.
That is, if impairment is even the appropriate term at the high-functioning end. Some prefer to talk about differences rather than defects.
A quirky kid
As a child, Stewart, 38, from Orem, Utah, would pace around the house and talk at length on subjects that interested him. "I could not have cared less if anyone was listening to me or cared what I was saying," he said. Mostly, he talked about dinosaurs. The family would nod indulgently.
He also generally didn't play with others. He would set up his toys and play by himself, because, he said, "everyone else played wrong.”
Stewart’s senses were a keen edge. He was highly distractible and used white noise from the radio to sleep or study. Still does. Taking a shower to him felt "ticklish and pokey," and he avoided it when he could as a youth. Those diminished with time, but he is still sensitive to temperature change.
"I knew that there was something going on, that I wasn't responding to the world the way to their people did, and that other people didn't see the world the way I did," Stewart said. But it wasn't until he’d been married and working for some time that he realized he had Asperger's syndrome.
System building
Jared Stewart’s personality may be quirky, his senses oddly heightened, but his life to this point has been remarkably normal. After some adjustments in his teenage years, his idiosyncrasies have not held him back. He may be one of the few people who dropped out of junior high school for graduating magna cum laude from a major college.
People on the autism spectrum, including Asperger’s, often fail to recognize social and emotional cues that others take for granted. Not even knowing he was on the spectrum, Stewart instinctively realized that the chaos and complexity around him would be easier to navigate if you reduced it to simple rules.
He thrived on his Latter-day Saint mission in Japan, because the life of a missionary was organized, and even the lesson materials, at that time, were very systematic, relying on a highly structured “commitment pattern.”
Stewart’s self-invented systems to navigate complexity got him through high school, college, his missionary years, and now even his marriage. In fact, even before he knew he had Asperger's, he leveraged the systems learned on his mission to establish strong communication channels with his wife, allowing him to compensate for his Asperger-induced intuitive gaps.
Stewart’s message to the parents of his students is this: "You've got to help your child come up with systems that work for them. If you can take your focus and use it to decipher the unwritten curriculum and then you can succeed in the neurotypical world.” Those who cannot pull this off, Stewart said, run into serious challenges navigating the complexity around them.
An epiphany
It wasn't until Stewart began teaching at Scenic View Academy in Orem, Utah, that it suddenly dawned on him that his differences had a name. One day he saw a group of students reading about Asperger's Syndrome. He had never heard of it before, but quickly recognized it in himself.
Scenic View is a private school at the mouth of Provo Canyon, founded in 1999 by Ray Noorda — longtime CEO of computer networking firm Novell — and his wife, Tye, who had looked in vain for a suitable place to school their own son, who had a developmental disorder on the autism spectrum.
Scenic View serves young adults with developmental challenges who have average or above-average cognitive skills. In practice, this has led to a heavy focus on high-functioning autism and Asperger's.
Jared Stewart’s job at Scenic View is to help students develop their own systems to navigate a complex world. On a recent Wednesday afternoon, Stewart is teaching a class of six young people about "change blindness," the phenomenon where gradual but major changes can go unnoticed. It's part of a cognitive skills workshop that could come straight out of a college-level psychology course. The students are attentive, quick and offer insightful observations.
Saving a marriage
Programs like Scenic View are critical for many with Asperger’s. For some, simply holding a job or navigating the world is difficult. Others have no problem in the outside world but struggle to maintain intimate relationships.
Stewart was fortunate to have discovered coping tools before he knew he had a problem. Others have been less fortunate.
“It's amazing how swiftly spot diagnosis can catalyze change," wrote David Finch in The Journal of Best Practices, his memoir about how discovering his condition and learning to cope saved his marriage.
During the first five years of their marriage, Finch's wife, Kristen, had no idea that his many quirks actually have a single name. He describes the night that Kristin took him aside, after the kids were in bed, and read him a list of 150 questions that had both painfully and amusingly close to home.
The Asperger's diagnosis changed their lives and saved their marriage.
“Armed with knowledge and new self-awareness,” Finch wrote, "I could start looking every day for ways to manage the behaviors that have been wreaking havoc on her marriage. Address the causes of the symptoms will vanish. I wasn't interested in a complete personality overhaul: I just wanted to become more in control of myself.”
Like Stewart, Finch responded with a system, starting a journal to track his observations of relationship do's and don'ts — the journal that leant its name to his book.
Identity and community
Stewart doesn't mind the change in labels. As he sees it, there is not a whole lot of difference between high-functioning autism and Asperger's syndrome when it comes to diagnosis or treatment.
The Asperger’s label is an example of the positive impact a diagnostic label can have, said Gary Greenberg. Greenberg — a practicing psychotherapist and a frequent contributor to Harper's, The New Yorker, and Rolling Stone — recently published Book of Woe, an equal parts disturbing and hilarious account of the newly released APA diagnostic manual that certainly leads one to question any aura of authority enjoyed by the psychiatric profession.
Greenberg is often skeptical of labels in psychiatry, but views the Asperger’s label as a debatable exception. “It gave people who were somewhat disenfranchised an identity, a community, and access to resources,” he said.
Those resources extend beyond material benefits, such as access to specialized education. "There is also the compassion, and tolerance, and acceptance that come when people believe that what is troubling you is a medical problem."
When the APA decided to remove the Asperger's label, Greenberg said, "and they were flooded with protests by people with Asperger's, they were surprised to learn that people were worried that by taking away their diagnosis they were taking away their identity."
Greenberg said that the removal of the Asperger's label would not destroy the community and identity that has developed around it. In fact, to the degree that people with Asperger's embrace the "neurodiversity” worldview, Greenberg said, it is necessary and inevitable that the medical label be dropped.
Neurodiversity
“Neurodiversity” is the notion that there are a wide range of different ways of thinking, of different ways of brain function, and being different is not the same as needing help. The average brain is not “correct,” this argument goes. It is merely "neurotypical.”
“In a strange way, the APA is doing them a big favor," Greenberg said. "There is a real tension between, on the one hand, the idea of neurodiversity and on the other hand the idea of pathology. Those two things are hard to have together."
The backstop in the diagnostic manual, Greenberg said, remains the catchall "not-otherwise-specified" label that can be attached to problems along the autism spectrum that require treatment or educational support.
If the new system works, then "Aspies” will maintain their identity and have resources to learn to optimize their strengths while compensating for their idiosyncrasies, but they will not obtain a medical label unless it proves necessary.
Eric Schulzke writes on national politics for the Deseret News. He can be contacted at eschulzke@desnews.com.