In a Different Key

by John Donvan

  Very often, the DSM’s zigzags on autism have reflected the almost philosophical divide between two camps of experts: the “lumpers” and the “splitters.” This tension was on display when Lorna Wing and Hans Asperger disagreed as to whether his cases and Leo Kanner’s were more alike than different, or the other way around. Asperger, it will be remembered, believed that he saw two distinctly different syndromes in his cases and Kanner’s cases. His insistence on splitting his and Kanner’s children into separate groups, according to key differences, made him a classic splitter. Wing, on the other hand, always spoke like a true lumper, arguing that virtually everyone with some trace or combination of autistic behaviors belonged to the same group, since the core mechanisms of autistic behavior operated in all of them in the same way, albeit to varying degrees. This thinking is what led to her construction of the highly influential “spectrum” model of autism. Today this quintessentially lumper idea is widely accepted, to the point where even popular culture appears to embrace it as unassailable truth.

  But if history is a guide, that could change. As with any previous understanding of autism, the spectrum construct is not without drawbacks, and a swing back to the splitters is quite possible if, for example, further scientific inquiry determines that clusters of autistic behaviors that look similar in fact arise from divergent causes—environmental, genetic, or other. The study of cancer offers an analogy. For years “cancer” survived as an umbrella term for all cancers, until the field of oncology learned that different cancers are in fact radically different, each with its own signature and its own distinct biological process—and was thus forced down the path of the splitters. Autism too might turn out to be a plural entity. Researchers might discover that there are in fact autisms, each with its own genetic “fingerprint,” each significantly unrelated to the others. If that were to happen, the idea of a broad spectrum, which smudges those differences, would have less explanatory power, and might lose some of its currency in the conversation about autism.

  Such lines of inquiry, however, would require a commitment to research into the biomedical aspects of autism rather than a focus on psychiatric or behavioral interventions. Yet at the beginning of the 1990s, there was virtually no biological research into autism, and the few scientists studying it had little financial support. That is, until four parents, living on opposite coasts of the United States, decided to do something about it.

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  MEETING OF THE MINDS

  The two husbands were arguing before the appetizers arrived. By the meal’s end, it appeared the merger idea was in trouble. For reasons of philosophy and personality, it was beginning to look obvious that two of the most ambitious parent organizations ever to join the autism cause would not, after all, be getting married.

  It was disappointing, perhaps, because both couples and both organizations were after exactly the same goal: to inspire the biomedical research community to take autism seriously. Because as of their sit-down in late 1995, at a restaurant near Princeton University, that was definitely not happening.

  Not biology-based researchers anyway. Not the geneticists, the allergists, the endocrinologists, or the gastroenterologists. For researchers in these and other biomedical fields, autism was a non-topic, a dead-end children’s condition best left to the psychologists, psychiatrists, and pediatricians.

  By remarkable coincidence, these two sets of parents, on opposite coasts of the United States, had both recently set out to alter this reality with a level of ambition and energy that would, together, galvanize a movement. Unaware the other existed, both couples had had the same idea for changing the world, at almost exactly the same time.

  One couple lived in Hillsborough, New Jersey, but used a mailbox in nearby Princeton for their group’s address. Husband and wife were both Ivy Leaguers, and they liked the implied association with Princeton University. The other couple, who had flown in from Los Angeles for this lunch, both made their living in the movie industry. A mutual acquaintance had encouraged the four of them to get together at this table to discuss joining forces. On the face of it, this meeting of the minds made perfect sense.

  After all, they had so much in common.

  —

  KAREN LONDON, A corporate lawyer, had stopped practicing law when her son, Zach, was diagnosed with autism in 1987. Her husband, Eric, a research psychiatrist, had continued his work, which focused on Alzheimer’s disease and geriatric psychiatry, although now, of course, he read anything new hitting the medical literature that shed light on his son’s condition. Colleagues like his friend and fellow psychiatrist Arvan Mirrow also kept an eye out for relevant research and brought it to Eric’s attention now and then.

  In November 1993, Mirrow showed up at the doorstep of the Londons’ New Jersey home hauling three thick binders in his arms. He had just returned from the annual meeting of the Society for Neuroscience, held that year in Washington, DC. The binders contained the full set of short, descriptive “abstracts” for every piece of new research that had been presented and discussed at the conference. In total, there were some eleven thousand abstracts, all connected to brain research, which was becoming a hotter topic all the time. Mirrow had grabbed the binders thinking Eric and Karen might want to scan the abstracts for any new brain studies that focused on autism.

  For the next few hours, the three of them flipped through the pages, running a finger down the index at the back end of each binder, searching for the word “autism.” As hits were made, one of them kept a running tally.

  The result struck the Londons as pathetic. Eleven hits, out of eleven thousand papers. What was worse: not one of these papers was about autism. The word came up only in passing, in phrases like in contrast with autism or unlike autism. Karen and Eric found it difficult to fathom that the world’s leading brain scientists had just assembled, and autism had not come up.

  —

  ONCE, BACK IN 1974, a concerted effort had been made to investigate how autism influenced and was influenced by the organ systems of the body, the brain included. In June of that year, a group of parents attending the annual meeting of the National Society for Autistic Children in Washington had brought along their children for the express purpose of extracting the maximum amount of data about their brains and bodies that the five-day time span would allow.

  It went a little like a fire drill. As the regular parent meeting proceeded inside the hotel ballroom, a van pulled up to the lobby every forty-five minutes to transport another group of four children and their parents to a nearby clinic. Once there, each child was rushed through a battery of body measurements, blood draws, urine collection, and some quick psychological testing, while the parents filled out questionnaires on behaviors and family history. Then everybody cleared out again in time to make room for the next van load. In this way, biomedical data was gathered on a total of seventy-eight children with autism—more than had ever been collected in a single research project.

  While the book of papers based on this data, published in 1976, produced no breakthroughs, it yielded some intriguing findings. The biologically based observations included an increased presence of antibodies to the herpes simplex virus, higher zinc levels, and a higher-than-expected degree of intestinal irritation—among many others. Any of these was a potential lead for further research.

  But the leads were never followed, except, perhaps, by one of the parents who organized the effort, Bernie Rimland. This was not because the work was disparaged. It was because, in 1976, with the exception of Rimland and very few others, the scientific community was almost entirely uninterested in the biology of autism.

  —

  THAT HAD NOT changed much by the time Eric and Karen London met a scientist named Margaret Bauman for dinner in the fall of 1993. Bauman, a pediatric neurologist with Massachusetts General Hospital, was one of the very few scientists from that period interested in studying the physical brains of children with autism. She had access to a small but precious store of brain tissue, a g
ift to science from some bereaved but generous parents of children with autism who had died young. For a while, Bauman had been able to carry out a small number of studies detailing what appeared as distinct anatomical anomalies in their brains. But she confessed to the Londons that funding for her research was not easy to come by, as few foundations saw cause for understanding autism at that level. Right then, with no new money lined up, the brains were sitting in a laboratory freezer, unused.

  The Londons shook their heads at this. Bauman confided that she had held this conversation before, and that lots of parents were as bothered by it as she was. She also mentioned that she would be speaking to some of them the next night, when she was the scheduled keynote speaker at the annual conference of the New Jersey Center for Outreach and Services for the Autism Community, which was already under way.

  In fact, the Londons had been attending the conference in shifts, so that one of them could always be home looking after Zach. It was Eric who was there the next day when Bauman delivered her talk. Afterward she started taking questions.

  “Why can’t we get funding to do autism research?” one parent stood and asked.

  Bauman paused and started to scan the audience.

  “Is Dr. London here?” she asked.

  Surprised, Eric slowly raised his hand—or, really, just his finger.

  “Oh, well, good,” Bauman said, “because he’s starting an organization!”

  A few minutes later, when Bauman’s talk ended, Eric found himself surrounded by parents. Some were thanking him already. Others asked how they could help.

  London excused himself, found a pay phone, and called home to tell Karen that, as of now, the two of them had just become activists for autism research.

  —

  JON SHESTACK ALWAYS had a photo of his son Dov, in his wallet, keeping it in reserve for situations in which a little emotional punch was called for, when he wasn’t getting his way. In a room full of legislators who needed some persuading to vote for more funding for autism research, for example, he would pull out the picture and hold it high, as if to say, Here’s one of the kids I’m asking you to help. There are half a million like him.

  Shestack was a movie producer. One of his biggest credits would be a thriller about a fictional hijacking of Air Force One, the president’s plane. His wife, Portia Iversen, was a television producer, and also a writer, an art director, and a set decorator, who had already won an Emmy. They met in the mid-1980s and were married in 1992. Their son Dov, born later that year, was diagnosed with autism in 1994. On that day, the developmental psychologist who delivered the diagnosis gave them what he said was his best advice: “Hold on to each other and cry, then get on with your lives.” It was as bizarre as it was shocking. The traditional institutions had all been shutting down during the preceding decade. They could not believe that a professional was recommending a throwback solution like sending their two-year-old boy away, then trying to forget he ever existed. Dov, the doctor warned, would destroy their lives if they did not put him away fast.

  They never even considered it. They did not know much about autism yet, but they knew that surely, by that point, scientists must understand more about it—and what to do about it—than this ill-informed pediatrician. Shestack and Iversen, well educated, solvent, and confident of their professional skills at “producing” their way out of difficult situations, resolved together to find that science and those scientists. Together, they would all bring Dov back from autism.

  That was how they conceived of autism—as the invader they felt had snatched their son. Not even two yet, Dov had dark half circles under his eyes from lack of sleep. He was unable to digest food, and the diarrhea that had begun at birth had never subsided. He did not make eye contact. He stared at shadows on the floor or rays of light shining though the kitchen blinds. He spoke no words.

  To Jon and Portia, it was obvious that their son was sick, and their goal was simple: to find him a cure.

  They had immediately started looking into the available treatments, the ones that had credibility behind them, but felt instinctively that Dov’s condition demanded an approach that went faster than the gradual, painstaking programs like TEACCH, and another known as “Floortime.” It was developed by Maryland psychologist Stanley Greenspan, who recommended that parents literally get down on the floor with their children and follow their lead for a more immediate, responsive, and playful interaction with them. They also met personally with Ivar Lovaas at UCLA. Again, talking to him, they realized they were being offered an approach that would take years, with uncertain results. That demanded a patience they did not think matched Dov’s situation. Already, the one conventional approach they’d tried, speech therapy, had gone poorly. After several months of it, the therapist had quit, telling Portia that, with her limited time, she felt obliged to work with children who had a real chance of making progress.

  This was devastating to hear. But it also reinforced both parents’ conviction that they were wasting Dov’s time with these education-based therapies, when it seemed so evident that Dov’s autism was intertwined with his physical ailments—the gastrointestinal problems, the sleep issues, the seizures, his hypersensitivity to most food. Jon and Portia were convinced that Dov was experiencing some sort of organic malfunction, one that clearly involved his brain.

  But they could find no experts with whom to discuss Dov’s autism at that level. The behavior analysts had nothing to offer in that regard. Neither did the psychiatrists and pediatricians. Though most experts now agreed that autism’s roots were organic—that is, biologically based in the physical organism—no one had been trained to deliver any organic-focused treatments for autism. They were not taught in medical school, because they did not exist. Not outside of quack medicine, that is.

  Portia began to understand this when, in her frustration, she boldly decided to wade into the medical literature, despite being a lifelong liberal-arts type. She set out to find the studies that looked at autism through the cross-sections of brain chemistry, nerve tissue, sleep patterns, and metabolic performance; began subscribing to scientific databases; and started haunting the UCLA medical school library. When she discovered—just as the Londons did in those binders of abstracts—that autism was no draw for biomedical researchers, she began pulling studies that she thought might shed some light on autism, even if their authors did not think so. Leaving UCLA with stacks of photocopies, she understood that she was well out of her depth, so she signed up to audit courses in molecular biology and neuroanatomy. She was not sure where all this would lead her, but she knew for sure the kind of knowledge she was after: anything that could shed light on Dov’s autism as a medical condition—curable by medical treatment.

  —

  THE PROBLEM WAS, there was no career to be had in the biomedical research of autism. Scientists, like anyone else, needed to eat. They also had egos. New graduates choosing a field of scientific research approached the decision with, of course, a sense of native curiosity—probably the same thing that led them into science in the first place. But there were other considerations. They would want at least a minimal sense of assurance that the work they did would not lead them to a dead end. They also wanted to know that they had good odds to get their work funded, ideally for years to come. The matter of biomedical research into autism was stuck in self-reinforcing inertia. Young researchers were not looking at autism, because there was no prior work on it that suggested autism research held promise as a career. And funders were not demanding more research in that area, because little had been produced that made the investment seem worthwhile.

  In New Jersey, Eric and Karen London understood what it would take to change the situation. Money. Eric would have the opportunity to test this proposition when he began attending scientific conventions. He strolled around the huge halls where researchers from around the world, by the hundreds, stood next to poster-sized displays of charts, data, and graphics illustrating the findings from their latest investigat
ions. Such freewheeling “poster sessions” are a tradition at scientific gatherings and conferences, meant to encourage scientists to enjoy some spontaneous conversation and an open exchange of ideas. At one of these, a reconvening of the same neuroscience group where the three binders had come from, Eric again found that, among the thousands of posters, not one mentioned autism. Several, however, displayed work that suggested, to him at least, the possibility of being applicable to autism. Someone doing brain imaging or sensory research, for example, might pull from the autistic population for study subjects.

  London was not surprised by the odd looks he received when he raised these possibilities with the researchers. Some of them needed to be reminded what autism was. None of them saw any point in bending their work to focus on an obscure disorder that, if anything, belonged to psychology. Some exhibitors became demonstrably impatient when London did not simply drop the subject.

  But that changed the instant London informed the scientists that he had money in his pocket, and that he wanted to fund researchers looking at autism. Suddenly, he had the previously impatient scientists nodding, agreeing that, yes, in theory, there was no reason autism couldn’t be brought into more focus in their research—what an interesting area of study!

  Eric was not bluffing about having the money. In 1994, not long after Margaret Bauman called on him in front of everybody at her talk, he and Karen had launched the National Alliance for Autism Research (NAAR). Its mission, as spelled out in an early version of its website, was “funding and otherwise accelerating biomedical research” into autism. Since then, he and Karen, with help from other parents, had made rapid progress in building an organization. They were lucky to get some sizable donations within their first five months of existence, on the magnitude of tens of thousands of dollars, contributed by a small number of affluent donors. This initial success led them to believe that their vision might stand a chance of being realized, and that more money would follow.