A Conversation with John Donvan and Caren Zucker
Q) The two of you have been on the front lines of reporting on the social, medical, and legal aspects of autism since 1999. What first got you interested in the topic?
A) Caren: My son Mickey was diagnosed with autism in 1996 when he was two and a half, and that diagnosis brought a fairly dramatic and permanent shift to my life. It also spurred a new direction in my career. Although I continued my more traditional news reporting for ABC, I wanted to use my skills as a reporter and producer to help educate both the autism community and society about autism.
John: For me, the spark came from my marriage to Ranit Mishori, who grew up in Israel with a severely autistic younger brother. It was in talking with Ranit’s mother, Edna Mishori, that I began to learn of autism’s astonishing, sometimes troubling, often inspiring “backstory.” Indeed, Edna was one of those inspirers, as she became, way back in the 1960s (autism’s “dark ages”) a leading activist for change in the way people with autism were perceived and treated by society. The two of us had already been working together as a producer/correspondent team for ABC News and we set out to make autism something of a beat, launching a series called Echoes of Autism. In 2001 we produced the first network special on applied behavior analysis, which is now the gold standard for autism treatment.
Q) How did the diagnosis of autism come to be recognized? Who were the scientists behind it?
A) Autism is a name we give to a condition whose boundary lines are not especially clear, and never have been. Our conception of it dates to the time around World War II. Just before the war, a pediatrician in Austria named Hans Asperger began using the word autistic to describe a number of boys he was treating who demonstrated high intelligence but had severe limitations in social skills. At the same time, a child psychiatrist in Baltimore named Leo Kanner met the first of eleven children whose “autistic” traits he would write about in 1943, in the paper that introduced the concept of autism to the world. The very first person who received the diagnosis was Donald Triplett, who is still alive, and whom we profile in our book.
Q) In your book, you say that autism existed decades, even centuries, before the diagnosis was invented. What evidence of this did you find?
A) Before Kanner’s and Asperger’s research, autism almost certainly existed, but the behaviors that signal it were either overlooked or diagnosed as intellectual disability, or even mental illness. We are intrigued by studies that have attempted to find autism in the historical record, in descriptions of people who lived and died before the diagnosis was coined. Our most interesting find was in a study undertaken in the mid-nineteenth century by an educator named Samuel Gridley Howe, who recorded data on every person in Massachusetts who exhibited intellectual disability (then known as “idiocy”). When we looked at his cases, we felt an almost breathtaking sense of recognition: his subjects sounded like people who today would be diagnosed with autism. Though it is difficult to retrospectively diagnose people with certainty, the case for Howe having come face to face with autism—without knowing it—seemed so compelling to us that we had to include it in the book.
Q) You write about some of the obsolete theories of autism, including the incredibly destructive “refrigerator mother” theory. When was the term first coined, and what did it mean? How did it affect mothers?
A) It sounds ludicrous today, but back in the 1960s, it was commonly accepted that mothers were the cause of their children’s autism. This theory had the full force of American psychiatry lined up behind it, and was the subject of a report in TIME magazine in 1948. The idea was that the mother’s “coldness” had driven the child’s retreat into a separate, “autistic” world. Hence the term “refrigerator mother.” For our book, we were able to interview Rita Tepper and Audrey Flack, two mothers who raised children with autism during that era. Rita worked in special education and Audrey was an accomplished artist. For them to be accused of not loving their children enough was not only insulting but incredibly frustrating. Both women vividly describe what it was like to deal with the medical establishment at that time and how they came to rebel against the prevailing view.
Q) You write about the great civil rights battles waged on behalf of people with autism over the past decades. What were the key battles and what sparked people to take action?
A) At one time, public schools were under no obligation to offer an education to a child with autism. At the same time, society and the medical profession put parents under enormous pressure to send severely disabled children away to institutions, often for life. This did not change until the 1970s, when lawsuits and lobbying forced the public schools to take responsibility for the education of all children, regardless of disability. Simultaneously, a campaign was waged to shut down the huge psychiatric institutions, which had been exposed as dismal places where children were simply “warehoused,” often neglected and abused. The world is a different place today for children with disabilities because these battles were fought so tenaciously and successfully.
Q) What did you discover about the role of parents in helping children with autism gain acceptance and in gaining civil rights for them?
A) Parental love has been the driving force behind almost every change made for the betterment of children “on the spectrum.” Though they began as amateurs in the ways of science, politics, and bureaucracy, parents were, decade after decade, gladiators in the cause of making a place in the world for their children. The refrigerator mother theory was beaten back by parents. Likewise, the campaigns to shutter institutions and force open classrooms were spearheaded by parents. Parents also persuaded scientists to reassess the scientific value of autism research and worked assiduously to make everyone else understand that autism existed, and that it mattered. Today, people with autism are speaking for themselves more and more, but for decades they had only their mothers and fathers to speak for them. All activists today stand on the shoulders of those earlier generations of autism moms and dads.
Q) You report on some startling findings concerning Hans Asperger, the Austrian doctor who came up with the diagnosis that bears his name, about his cooperation with the Nazis. How did you come across this information and what exactly did you find?
A) Hans Asperger, whose important work dates to Nazi-era Vienna, first recognized what became known as Asperger’s syndrome, and his name has been adopted by legions of people who proudly call themselves “Aspies.” For some time the story has been that Asperger was a wartime hero who protected the disabled children in his care from Nazis who sought to exterminate them.
That narrative was turned upside down for us—very much to our surprise—when we came across the work of Herwig Czech, a young Austrian historian—the grandson of a convinced Nazi—who has dedicated his professional career to exposing Austrian medical professionals who collaborated with the Nazis during the war, yet worked to cover up their actions after the war was over. Czech shared with us the document he found, written in Asperger’s own hand, recommending that a two-year-old girl be sent to a facility operated by the Nazis under the pretense that it was a hospital, when in fact it was a place where disabled children were murdered. The child died there. Czech has also discovered documentary evidence that Asperger played a senior role on a commission that selected children at a school for the intellectually disabled, knowing that they would be sent to the same killing facility.
Amazingly, some have argued that Asperger was only pretending to go along with the Nazis in order to fight them from within the system. That would certainly put some other aspects of his conduct in a better light: his habit of signing his correspondence “Heil Hitler” (which was not obligatory), his cozying up to a Nazi Party member as his mentor, his attempt to become a medical advisor to the Hitler Youth, and his membership in a doctors’ organization that worked to expel Jews from the medical field. All this, too, was unearthed by Czech. Accepting that this pro-Nazi performance was a ruse on Asperger’s part, however, was a leap of faith we could not make.
Q) You tell the story of how the public came to falsely believe that vaccines cause autism. Interestingly, you also explain that the vaccine scare had at least one unintended positive consequence. What was that?
A) The vaccine controversy did a lot of damage. It eroded trust between parents and medical professionals, and it may well have led to outbreaks of once contained diseases, as a result of parents choosing not to have their children vaccinated. That said, the vaccine controversy did accomplish one good thing: it made autism “famous.” Well into the 1990s, autism was still a condition with a low profile. Some people might have heard about it or seen the 1988 movie Rain Man, but the condition was little known or understood. Then the vaccine narrative took hold and, suddenly, any parent with a small child worried about the possible aftereffects of vaccination. Suddenly, too, autism was being discussed on the news, and argued about in state legislatures. The notion that a healthy child might develop autism from one stick of a doctor’s needle did more to raise autism awareness, we think, then all the work done by advocacy organizations before or after. It was advertisement by fear. The fears were unfounded and counterproductive, but the greater awareness of autism has been valuable.
Q) There was a time when almost no scientific research was being done on autism. What spurred scientists to undertake research into autism?
A) Parents did it, plain and simple. Until the 1990s, autism research was seen as a backwater—not a field for any scientist with serious career ambitions. Autism was understood to be a psychiatric condition, so there was little interest in exploring the biology of it, and little to no funding. Then, in the mid-1990s, two couples turned that situation around. Each couple was raising a child with autism. In California, a movie producer named Jon Shestack and his wife, Portia Iverson, a set designer, founded an organization called Cure Autism Now, with the stated goal of wanting to “hurry up science.” At the same time, near Princeton, New Jersey, psychiatrist Eric London and Karen London, a lawyer, started the National Alliance for Autism Research. Both groups used persuasion and dollars to entice a new generation of researchers from a wide range of biomedical sciences—genetics, endocrinology, neurology, and others—to make autism the focus of their work. Today scientists compete with one another to make discoveries about autism.
Q) There has been debate about whether there is truly an autism epidemic. Why is the prevalence of autism so hard to determine?
A) We do not know whether there is an autism epidemic. No one really does. Here’s why: the definition of autism has changed dramatically over time, and there is strong evidence that the likelihood of being diagnosed with autism is affected by such factors as race, socioeconomic status, and the level of autism awareness in a given community. An individual whose autism is confirmed by one clinic might be told by another clinic that he does not fit the pattern of someone with autism. This means that when an autism “rate” (most recently 1 in 45) is published, it is the result of a counting process that is confounded by a serious kind of apples-to-oranges problem. It is simply not clear that, from place to place and time to time, all those who are calculating the number of cases of autism are counting the same thing.
The scientists doing the counting know this. They always include disclaimers regarding the limitations of their own studies. Nevertheless, if the CDC comes out with an estimate, the news media treats it as a hard number, and that number gets higher all the time. Advocacy organizations also like to tell the epidemic story because it generates attention and the sense of an emergency. Whether or not the prevalence of autism is increasing, we do not believe it should take an epidemic to inspire a sense of urgency about helping to improve the lives of those with autism.
Q) For decades both scientists and parents have attempted to come up with effective treatments for autism. What are some of the now discredited treatments you write about? Are there any treatments that have wide acceptance today?
A) It is partly because autism itself is such a shape-shifting concept that so many different kinds of treatments have been tried. In the 1960s, the leading treatment was psychoanalysis of the mother. Scientists also unsuccessfully attempted to get nonverbal children with autism to talk by dosing them with LSD. Other treatments have included vitamins, restrictive diets, and “holding therapy,” which entails parents squeezing their children tightly while verbally venting. At many points the media has jumped the gun and announced a major breakthrough in the treatment of autism, even though, all too often, the benefits experienced by the early adopters cannot be reproduced, and the treatments fail in controlled trials. Facilitated communication, a treatment that involves supported typing, has been disproved but is still employed by some educators and parents to this day.
Today there is only one treatment that is widely considered effective and that has been scientifically replicated: ABA, or applied behavior analysis. This method teaches beneficial behaviors—such as using a toothbrush—by rewarding children each time they repeat the behavior. The recommended course of treatment is extremely intensive: 25 to 40 hours per week between the ages of two and five. ABA’s early history is controversial, as practitioners once used “negative reinforcement”—from slaps in the face to electric shocks—to motivate children to learn. It still has opponents, but in its modern form, which relies only on positive reinforcement, it is considered the gold standard of autism treatment.
Q) The neurodiversity movement has gotten much press lately. What is it and what are its origins? Why do some parents of children with severe autism object to it?
A) The first movers in the neurodiversity movement, beginning in the 1990s, were people who had the diagnosis themselves, and who rejected the portrayal of people with autism as sick, “broken,” or requiring a cure. They argued that being autistic is simply a variant of being human—albeit one with challenges, sometimes requiring support and accommodation—and that the dignity and individuality of each and every autistic person must be respected. Their call to respect the humanity of those with autism echoes what autism parents have long said. Today, the neurodiversity movement has broad appeal, particularly among people with autism who are capable of high levels of achievement in life; among some parents of autistic children; and among a lay public that is increasingly sympathetic to the point of view that difference from “the norm” should not be construed as deviance.
However, the neurodiversity movement is more than this. From this set of values springs a controversial argument: that society should not seek to cure people with autism, or try to modify their autistic behaviors in order to help them “fit in” and look “normal.” Many in the movement believe that autism is to be celebrated as a gift that endows some who have it with extraordinary talents and insights. Some argue that in seeking a cure for autism, mothers and fathers are rejecting their children.
The notion of autism as a gift is an important corrective to narratives in which autism is always and only a tragedy. However, to parents who have children with severe autism—children who will never be able to speak or care for themselves—the notion that autism is a gift, and that a cure is to be avoided, seems preposterous. These mothers and fathers have acted as their children’s advocates and voices (sometimes literally) since early childhood. They love their children fiercely and are deeply insulted to be told that hoping for a cure that might allow their children to live independently means that they are rejecting them. Thus, the topic of neurodiversity has become a hot button in the autism community.
Q) Today the prevailing way of looking at autism is through the prism of the “autism spectrum.” Where did the idea of the spectrum come from? What are its positives and negatives?
A) The “spectrum” has emerged as the most popular conception of the condition—or conditions—we call autism. To us it is an open question whether it will stand the test of time and science.
The idea of the autism spectrum was conceived and promoted by a British psychiatrist named Lorna Wing, beginning in the early 1980s. The mother of a daughter with autism, Wing was one of the most original thinkers in the field. She resisted the idea of dividing people with autism into disparate groups, such as those considered to have Asperger’s and those with “classic” autism. As Wing saw it, autism was expressed with such subtle degrees of difference that it “shades into eccentric normality.” “Nature never draws a line without smudging it,” she liked to say.
The idea of the spectrum has proved to have great appeal and a good deal of utility. The argument that autism shades into normality has helped to destigmatize the condition. Also, the greater willingness to accept the label has allowed more people with autism to get much-needed social services. Still, the autism spectrum remains a hypothesis, not a fact. It becomes unsatisfying at the extremes—lumping together a successful professor who is brilliant at math, but with social challenges that may leave him friendless, and an entirely dependent adult who cannot speak and will have to wear diapers for the rest of his life. Both fall under the umbrella of “Autism Spectrum Disorder,” according to DSM-5, but in a practical sense, the similarities of these two men seem overshadowed by their stark differences.
Also, it is not clear that the behaviors considered autistic necessarily have the same origins, or will follow the same course in life, or will respond to the same treatment. We can see an analogy in the field of oncology, where scientists are discovering that leukemia differs greatly from breast cancer, and that neither is the same as melanoma. At one time, these diseases were all called cancer, but we are now learning that these conditions are so unrelated as to render meaningless the simple designation “cancer.” It is entirely possible that the same will happen with what we call autism—that research will discover multiple autisms, each so different from the others in cause and course that lumping them together in a spectrum will not make sense.
Q) You tell the story of Donald Triplett, the first person diagnosed with autism, now in his eighties and living in the same small Mississippi town where he grew up. In what ways is his story unusual? In what ways might it serve as an example for other adults with autism?
A) Donald had a rough start, but he has had a wonderful life, and not just for a person with autism. He is a healthy man in his early eighties who still plays golf and lives contentedly on his own, surrounded by family and friends he has known all his life. Much of this is due to Donald’s intelligence and adaptability. But we think the circumstances in which he grew up are also a factor in how much he has grown as a human being. In the town of Forest, where he was raised, everyone knows everyone else, and tomorrow is likely to be much like yesterday. His parents were owners of the local bank, wealthy by Mississippi standards. Given the town’s ethos, and given how deeply embedded his family was in the community, residents slowly came to embrace the strange boy in their midst. He was respected, included, encouraged, and protected. This went so deep that, in 2007, when we made our first visit to Forest, residents warned us that we’d better not do anything to hurt Donald, because they “knew where to find” us. They were not entirely joking!
We wish we could bottle the attitudes Forest, Mississippi, had toward Donald and export them to any setting where people stand out as different by virtue of disability.
Q) Many people think of autism as something that affects children, but you point out that it’s a lifelong struggle. What obstacles do you see affecting people who are aging with autism?
A) Every child with autism becomes an adult with autism, and yet autism is still most often framed as a condition affecting children. There is one upside to that: society’s response to children with autism has become more and more positive with time. Kids with autism go to school and receive therapy because we finally and slowly woke up to their needs.
Unfortunately, that has yet to happen with adults. Most of the supports society has developed for people with autism end at the age of twenty-one. There is a huge unmet need for housing, work opportunities, and support staff. Finding a way to fully integrate adults with autism, as we have done to a significant degree with children, is a job half done at this point. In a Different Key shows how getting the first half done was accomplished. We hope it can serve as an inspiration for the work that still remains.