In the 1990s the United States saw a significant rise in the number of people being diagnosed with autism, a cognitive disability that impairs social and language skills, often causing those who have it to cling to repetitive routines and struggle to form relationships. Researchers attempted to attribute the spike in diagnoses to a number of culprits — most infamously, and wrongly, to vaccines — but the simplest explanation is perhaps the strongest: until the 1990s autism diagnoses were rare because in the U.S. people with autism had been kept largely invisible.
The autism diagnosis didn’t exist until the 1940s, and in the first half of the twentieth century the condition was typically misdiagnosed as “childhood schizophrenia.” Even after autism had been properly identified, clinicians blamed patients’ parents for not showing their children enough love. The most common treatment was to have the autistic person institutionalized, out of sight and often cut off from family members, allegedly for his or her own good. And the diagnosis remained exceedingly rare. Most autistic people — particularly those with milder traits — simply managed as best they could in a society that considered them very odd or eccentric.
In 2001 Steve Silberman, then head science writer for Wired magazine, was working on an article about two leading figures at technology companies when he learned that both had autistic children. He was talking to a friend over lunch about this seemingly unusual coincidence when a woman at the next table overheard and told him there was an “epidemic” of autism in the high-tech world of Silicon Valley. Silberman did some research and found there was indeed a high incidence of autism in the area. In his experiences interviewing tech workers at Google, Microsoft, and Apple, he had noticed that many of them exhibited autistic traits — difficulty reading body language and facial expressions, for example.
The article Silberman wrote about the phenomenon, titled “The Geek Syndrome,” inspired hundreds of responses from parents of autistic children and autistic people themselves. For Silberman it was the beginning of a long fascination that would eventually lead to his 2015 book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.
Silberman’s work is part of a larger change in how autism is viewed. In 2013 the diagnosis was reclassified as “autism spectrum disorder” to acknowledge that it encompasses a wide range of people with varying degrees of disability. “Autistic people know better than anyone that autism includes deficits, but it also brings gifts,” Silberman says. Though not a scientist, he has written about science for fifteen years, and every citation in NeuroTribes is thoroughly documented in forty pages of notes. The book has won numerous awards, including the Medical Journalists’ Association’s Book of the Year. His website, stevesilberman.com, contains archives of his writing and provides links to resources for families with autistic members.
After having studied psychology at Oberlin College in Ohio, Silberman earned a master’s degree in English literature from the University of California, Berkeley. As a young man he interviewed poet Allen Ginsberg for Whole Earth Review, which led to a position as Ginsberg’s teaching assistant at Naropa University. A longtime music fan, Silberman has also received a gold record for producing the Grateful Dead box set So Many Roads and coauthored a “dictionary for Deadheads.”
I met Silberman at his home in the Haight-Ashbury district of San Francisco, where he lives with his husband, Keith, a high-school science teacher. Although Silberman has spent more than a year traveling the country to promote NeuroTribes, he’s lost none of his enthusiasm for the subject. A Miles Davis recording played quietly in the background as we talked. Silberman repeatedly apologized for the mess surrounding us: he’d had little time to clean up during his prolonged book tour.
Leviton: I studied psychology at UCLA in the early seventies, and I saw films of autistic children who were either catatonic and unable to communicate or so out of control they had to wear protective helmets, straitjackets, and other restraints. Autism, we were told, was an incurable lifelong condition.
Silberman: Those films were of kids who’d been institutionalized, which was the standard “treatment” for autism for most of the twentieth century. The theory was that parents caused autism through a lack of warmth, so doctors needed to remove the child from the allegedly toxic family environment. I’ve spoken to parents who in the fifties and sixties were told to put their autistic son or daughter in an institution and move on with their lives. This was considered good for the child, for the parents, and for any siblings. Some kids were placed in state schools for children with intellectual disabilities, and others were put in locked wards for adult psychotics. These autistic kids were often subjected to seclusion, restraint, and physical punishment by clinicians who did not understand their condition. The head of children’s psychiatry at Bellevue Hospital in New York City, Lauretta Bender, administered electroconvulsive therapy to autistic patients and also insulin-shock therapy — administering overdoses of insulin to put them into a short-term coma. She gave them antipsychotic drugs like Thorazine. She also tried giving autistic kids LSD every day for nine months or more, but decided they were becoming “more anxious.”
The kids in those films had probably been subjected to such inhumane treatment. Behaviors caused by institutionalization under brutal conditions were then viewed as part of the “natural” course of autism.
Leviton: At the time there was a diagnosis called “childhood schizophrenia.” Is that the same thing as autism?
Silberman: That’s one of many labels that were applied to autistic kids. Leo Kanner, one of the first child psychologists in the U.S., worked at Johns Hopkins and presented autism in 1943 as a rare, new disorder he’d discovered — a sort of scoop in the medical world. He characterized the disorder as the inability to relate to people and objects in the usual way. He identified speech disturbances, including repetitions and confusion about pronouns, and said these children didn’t initiate much activity and spent most of their time alone, performing the same activities over and over, including spinning, flapping their hands, and hitting themselves. Those who showed awareness of others didn’t like to be touched and sometimes reacted with aggression to attempts to interact with them.
As soon as Kanner announced his discovery, other clinicians wrote to tell him he was describing childhood schizophrenia, which they’d known about for years. At first Kanner agreed, but then, wanting to defend his findings, he narrowed his definition of autism. He made it so unreasonably narrow, in fact, that it left out a lot of people who would receive the diagnosis today. For example, he would rule out autism if a patient had seizures; we now know seizures are common in autistic people. Kanner would rule out a diagnosis of autism if a child had an intellectual disability; we now know that autism often overlaps with other disabilities. He also believed autistic kids were exceptionally beautiful. Though many of the patients at Johns Hopkins were people of color, he wrote only about white, upper-middle-class children having autism. Many of the parents were psychiatrists themselves. He insisted that autism was rare, when really what was rare was having access to Leo Kanner’s office.
After he became the world’s leading authority on autism, Kanner boasted that he turned away nine out of ten children sent to him by other clinicians to confirm a diagnosis of autism. He once estimated he had seen only 150 “true” cases in his entire career.
This is one reason we see the steep increase in autism diagnoses beginning in the early 1990s — because prior to that, Kanner’s narrow definition made a diagnosis rare. People soon began looking to explain the sudden “increase” in autism. A 1998 research paper by Andrew Wakefield and others in the British journal The Lancet claimed to find a link between the MMR — measles, mumps, and rubella — vaccine and autism. Although Wakefield’s claims were later refuted and branded an “elaborate fraud” by the editors of the British Medical Journal, the discredited study continues to be cited by antivaccine parents.
Leviton: What did Kanner think caused autism?
Silberman: Initially he said it was probably hereditary in nature. But if it was an inherent trait, what could psychologists do, other than institutionalize the child? Under pressure from his colleagues to find a more nurture-based explanation, Kanner started blaming the parents for being emotional “refrigerators.” In Time magazine in 1948 he described autistic children as being “kept neatly in a refrigerator which didn’t defrost.”
His theory that autism was an abrupt withdrawal from an intolerable world created by unloving, unaffectionate, unemotional parents had a devastating effect on autistic people and their families. The phrase “refrigerator mother” entered pop culture, but Kanner’s critique wasn’t limited to mothers. He also blamed fathers. His protégé Leon Eisenberg wrote about the father of an autistic child: a man found in a train wreck still working on his scholarly paper, unaware of the disaster around him.
Kanner didn’t take into account that because autism is hereditary, many of these parents had autistic traits themselves, and therefore came off as emotionally cold or distracted. He misinterpreted this behavior as sinister, when really the parents were just being their somewhat autistic selves.
Gloria Rimland, a founder of the autism-parenting movement in the U.S., told me that when her son, Mark, was born in 1956, she and her husband had to diagnose his supposedly obscure condition by reading one of her old college psychology textbooks. Mark was such a demanding child that she and her husband barely left the house for years. When they finally did get out for dinner with another couple, the woman turned to Gloria and said, “You just don’t seem like the kind of person who would do that to her child.”
It was not unusual, all the way into the 1970s, for psychiatrists to ask parents of autistic children why they didn’t love their kids. You can imagine the agony, frustration, and guilt of these parents, who not only had a difficult-to-manage son or daughter, but were blamed for it by medical authorities. Their children were often denied an education, because there were no laws at that time to guarantee children with disabilities a place in public schools. Rich families sent their autistic children into institutions, and those with limited means essentially locked them up in the house. If you’re a baby boomer and wonder why you rarely saw autistic people when you were a kid, it’s because the most profoundly disabled folks were put away.
Meanwhile childhood schizophrenia was considered an “epidemic” in the fifties and sixties. The main symptom of schizophrenia is hallucinations, but, looking at those case histories, I found only a handful of children who had hallucinations. The diagnostic criteria for childhood schizophrenia back then would now put someone on the autism spectrum.
Leviton: Did Kanner have a theory about why autism was almost exclusively a male condition?
Silberman: No. As a society we are still struggling to understand that. The conventional wisdom is that autism is four times more common in boys. One reason for this might be that autistic boys exhibit more-aggressive behavior, which comes to the attention of parents, pediatricians, teachers, and other authorities, leading to a diagnosis. They might get kicked out of school for being violent, for example. Girls are less likely to be diagnosed because they are more often taught to fade demurely into the background and to agree with those around them. Boys, broadly speaking, are rewarded for being little Donald Trumps. A recent piece on an autism news site called Spectrum says that women with autism become experts at pretending they don’t have autism. We should be looking more at girls who are quiet, standoffish, intensely interested in their hobbies, and struggling to thrive socially.
In Psychology Today last year there was a shocking admission from one of the leading authorities on autism, Kevin Pelphrey at the Yale Child Study Center. This man, who diagnoses autistic kids all day long, missed some of the characteristics of autism in his own daughter until she was five. He was used to looking for male behavior.
People often ask if I believe autism is overdiagnosed, if we’re just slapping a label on geeky kids who in previous generations would have been considered merely eccentric. I reply that I believe autism is still underdiagnosed in two groups: women and people of color. The cultural and class bias built into the diagnostic process was so pervasive in the 1980s that psychologist Victor Sanua claimed that autism is rare among families of color. The reality was that people of color often didn’t get decent healthcare.
Stine Levy, a psychologist who started to work on autism just a couple of years after Kanner’s first paper had come out, once told me that by the time she gave a kid a diagnosis of autism in the 1980s, that child had usually been through ten clinicians and gotten ten wrong diagnoses. How many families can afford to doctor-shop their way through ten clinicians?
It was not unusual, all the way into the 1970s, for psychiatrists to ask parents of autistic children why they didn’t love their kids. You can imagine the agony, frustration, and guilt of these parents, who not only had a difficult-to-manage son or daughter, but were blamed for it by medical authorities.
Leviton: What about Asperger’s syndrome, which is often viewed as a mild form of autism?
Silberman: Pediatrician Hans Asperger began working on autism even earlier than Kanner, in the 1930s. His University of Vienna clinic was an unusually humane and compassionate institution — more of a residential school. The furniture was lovely; there was art on the walls. The children would live there for at least a month and attend regular classes while being examined. Asperger would even read poetry to them. It was not a sterile, institutional environment.
Asperger’s primary method was close observation. One of his assistants, Viktorine Zak, said, “We must observe the children down to their very toes.” Because the children stayed there day and night, the researchers could watch them eat, sleep, play, and socialize — or not socialize — with their peers. They also gave them tests.
Instead of comparing the children to some monolithic, artificial, narrow definition of normality, Asperger tried to figure out what each child needed to thrive. The only kinds of behavior considered problematic in Asperger’s clinic were those that created problems for the children themselves.
Asperger believed that autism is common, saying that once you learn to recognize its distinctive traits, you see them everywhere. He presciently viewed the condition as being what we now call a “spectrum.” He recognized that autistic kids spanned the range from those who could barely function without assistance to those who had the potential to become professors, as one of his former patients did. That patient had started drawing triangles and circles in the sand when he was two years old, and instead of telling him to stop, his mother had encouraged his interest in geometry. In grade school the boy had practically badgered his teachers to give him advanced math problems. This same boy, when he got to the university, detected an error in one of Isaac Newton’s proofs. Asperger said this success wasn’t because the patient had been “cured.” He was still “blatantly autistic” and would pass people he knew in the street without recognizing them. (Face blindness is fairly common among autistic people.) But Asperger knew that some autistic people could do amazing things if they got proper support and weren’t expected to act like nonautistic people.
That’s kind of where we are now when it comes to the best way to help autistic people thrive: We shouldn’t ask them to “act normal.” We should allow them to do what they need to do to feel good, just as we allow ourselves that freedom.
Asperger’s findings were forgotten because his clinic was in Austria, and in 1938 the German army marched over the mountains to claim that country for the “Fatherland.” Before long the new regime started passing eugenics laws to purge the human gene pool of hereditary disabilities. Prior to the Holocaust, the Nazis launched a secret extermination program later called Aktion T4, which aimed to eradicate children with autism, schizophrenia, cleft palates, cerebral palsy, Down syndrome, and so on. They converted the medical infrastructure of Germany and Austria into an industry of death. Clinicians were required to report patients with hereditary disabilities, who were then taken to special wards and given fatal injections, or starved to death, or left outside during winter. The parents would get a slip explaining their child had died of “pneumonia” — along with a bill for the burial.
Leviton: Asperger suggested that autistic people could help the German war effort, didn’t he?
Silberman: Yes, that’s true. One of the long-standing myths in the autism community is that Asperger saw only “high-functioning” children. That’s because in his first public talk on autism in 1938, to an audience of Nazis, he spoke only of his “most promising cases.” He wanted to emphasize his patients’ positive traits to save them from the eugenics program. He suggested that, because of their enhanced pattern-recognition skills, some autistic people would make good code breakers. The Nazis did not take his advice, and instead went on to kill Asperger’s patients.
Meanwhile one of the most important weapons the Allies had was the code-breaking and cypher work done at Bletchley Park in England, led by the brilliant computer scientist Alan Turing. I’m wary of “retro-diagnosing,” but many people have said Turing had autistic traits. His team broke the German Enigma codes and helped the Allies win the war, saving millions of lives.
Leviton: So Asperger’s clinic was shut down?
Silberman: He was sent to the front lines and became an ambulance driver during World War II. While he was gone, his clinic was bombed by the Allies.
For most of the twentieth century Asperger’s work was unknown, and his scholarly papers were not translated from the German. Why? Because Leo Kanner, the world’s leading authority on autism, did not mention his work, even though when Kanner “discovered” autism in 1943, he was working with one of Asperger’s closest associates, who had been forced to leave Austria because he was Jewish. Kanner and his wife rescued more than a hundred clinicians from the Holocaust by finding them jobs in the U.S. It was one of the best things he ever did. He also rescued another core member of Asperger’s team. Yet Kanner’s only mention of Asperger’s findings came in a dismissive book review he wrote for a psychology journal in the 1970s. He said Asperger had at best discovered a “forty-second cousin” of autism. Kanner had successfully buried Asperger in history. In fact, Kanner became so closely associated with autism that most clinicians called it “Kanner’s syndrome.”
Leviton: So when did we first hear about Asperger’s syndrome?
Silberman: In the 1950s a cognitive psychiatrist in London named Lorna Wing had a daughter named Susie, who had the classic symptoms of Kanner’s syndrome: she was not very verbal and engaged in a lot of repetitive and self-injurious behaviors.
Wing did not accept the “refrigerator mother” theory. She told me before she died that she thought it was “bloody stupid.” She also knew from her own research that not all autistic people presented the classic traits. Some were awkward in social situations and exhibited repetitive behaviors, but not enough to earn them an official diagnosis of Kanner’s syndrome. Then in 1971 she came across a brief reference to Asperger in the new quarterly Journal of Autism and Childhood Schizophrenia. Wing had her husband, John, who spoke German, translate Asperger’s original article, which outlined a much wider range of traits than Kanner did. Wing’s rediscovery of Asperger led to a broadening of the criteria for an autism diagnosis. She also introduced a new diagnosis that she called “Asperger’s syndrome,” because she knew that parents of children who could talk would more readily accept a diagnosis that didn’t contain the word autism, which was still heavily stigmatized and associated with “cold” parents.
Wing pointed out a problem with Asperger’s syndrome at the start: there’s no bright line between it and mere eccentricity. If we go too far in the direction of medicalizing eccentricity, we risk trivializing the challenges that autistic people and their families face in their daily lives. In the last twenty years or so people have gone overboard in diagnosing celebrities with Asperger’s syndrome, such as Facebook founder Mark Zuckerberg or comedian Jerry Seinfeld. Microsoft founder Bill Gates has autistic traits but is clearly getting along just fine, as is Seinfeld. If we think that’s what autism is, we’ll underestimate how much support autistic people and their families need.
Leviton: In the movie Rain Man, Dustin Hoffman plays an autistic man who has few social skills but can memorize the telephone book. We used to call such people “idiot savants.” How common is it for autistic people to have extraordinary abilities?
Silberman: Most autistic kids don’t, but there are some areas in which many of them stand out. For example, a higher percentage of autistic people have perfect pitch, the ability to accurately identify a note without a reference tone. Many have a heightened ability to detect flaws in patterns. The Israeli military has a special unit of autistic soldiers who do satellite-imagery interpretation. Special abilities in autism are not as rare as we once thought. Many historical figures with striking talents also exhibited autistic traits. In our own time I think of someone like Stephen Wiltshire, an incredible London artist who, as a child, was able to take a twenty-minute helicopter ride over Manhattan and spend the next few days drawing an accurate picture of all the buildings he’d seen.
People often make the mistake of thinking that savant abilities are related to milder forms of autism, but some of the most impressive savants are also severely disabled. It’s possible that, because they are not using a certain area of their brain, it becomes available for another task, the way a blind person might develop more-acute hearing.
Although many autistic people have unusual areas of ability, they also have what clinicians call “uneven cognitive profiles.” They might excel in math but be unable to tie their shoelaces. They might remember every street name in their town but not recognize their aunt’s face when she comes to visit.
People have gone overboard in diagnosing celebrities with Asperger’s syndrome. . . . Microsoft founder Bill Gates has autistic traits but is clearly getting along just fine. . . . If we think that’s what autism is, we’ll underestimate how much support autistic people and their families need.
Leviton: Working on NeuroTribes, you spent a lot of time with an autistic boy named Leo Rosa and his family.
Silberman: I wrote an entire chapter about the Rosas because I wanted to give an in-depth picture of what an autistic child is like and what the family goes through. When Leo was first diagnosed, his mother, Shannon, was convinced that autism was caused by vaccines. On the basis of advice from other parents and people I’d frankly call quacks, she and her husband started treating Leo with dietary supplements: antioxidants, antifungals, probiotics, megadoses of minerals. They spent thousands of dollars a month. Leo had vitamin B injections several times a week and received therapy for alleged “energy blockages” in his system. During this period Shannon started a blog about finding a cure for autism. In the 1990s the term of choice was recovery. The quacks would hold conventions and parade around children who’d supposedly “recovered” from autism. The videos are painful to watch, because the kids are clearly still autistic.
Some children do grow out of the diagnosis. That’s a legitimate phenomenon. But there’s never been a health-food product shown to encourage that. Some kids just see a reduction in the intensity of their traits as they get older, but they still need support. That’s one of the problems with thinking you can cure autism: it can take resources away from support.
Leo is now a teenager and still has limited language skills. He can understand most of what you’re saying and picks up on much of what’s going on in a room, even when he doesn’t appear to, but his own words are very simple. He’ll say, “Pizza, Costco,” if that’s what he wants for dinner. He’ll say, “Let’s go to space,” if he wants to visit the planetarium. It’s unclear whether he will ever be able to live independently.
Leo loves green straws from Starbucks. He always has them to chew on. I’ve never seen him without one or two. They are like his security blanket or good-luck charm. His mother has to find ways to keep him in green straws.
When he was young, Leo would hit himself. I once saw him placidly eating a bowl of yogurt. Suddenly he jumped up with a terrified expression and started hitting his head with his fists. He ran across the room as if something had frightened him. His father, who was used to this behavior by this time, said, “Hey, buddy, come on back to the table.”
Leviton: Have Leo’s parents come up with creative ways to communicate with him?
Silberman: Yes. Autistic people don’t like surprises, so each morning Leo’s parents present a visual schedule of his day. A picture of a fork and plate means mealtime. A toilet means a bathroom break. If Leo can visualize what’s coming, it’s reassuring to him.
Leo isn’t chatty, but he’s a very happy kid. His parents are not trying to force him to be someone he’s not. He’s loved for who he is, with the recognition that he’ll always have limitations. He has a lot of autonomy and can make crucial decisions about his life. Some parents think that if a child isn’t verbal, he or she has nothing to say. Not so.
When I first met Leo, he seemed to ignore me. After a couple of days he came over and threw his arms around me, then walked away without looking at me. So he certainly knew who I was, and he liked me, but he wasn’t showing it by smiling or speaking.
The strain on families of autistic children is great. The kids show behaviors that are sometimes difficult to watch, and they often don’t express love and affection in the ways we expect. When parents of autistic kids go to the supermarket, and their child acts eccentric, they get criticized by other parents for not “controlling” their child. These parents have to fight for their children to get appropriate therapists and classroom placements and an IEP, or “individualized education plan” — a legal document laying out what services the school will provide and how progress will be monitored and measured. A student with a disability might be allowed more time during standardized testing, for example.
Some public places are also starting to make accommodations for autistic children. One that’s proven wildly popular is autism-friendly movie screenings, where you don’t have to sit in your seat the whole time, and you’re allowed to make noise. Theater chains are seeing lines around the block for these events. There are more autistic people than you think.
Leviton: What is the rate of autism in the U.S.?
Silberman: The Centers for Disease Control currently estimates that about one in 68 children is on the autism spectrum: one out of 42 boys and one out of 189 girls. Those CDC stats are gospel in the autism community, but they are a total mishmash, the numbers put together from various data sets. I don’t mean to say they’re wrong, but they are not as precise as they seem. The source data are influenced by factors like access to healthcare and diagnostic resources. For instance, the lowest rate of autism, according to the CDC, is among Hispanic families. Now, is that because they are immune to autism, or is it, more likely, because they have limited access to healthcare? Communities with more resources have higher autism rates.
Leviton: Has it been proven that autism runs in families?
Silberman: Yes, it’s highly heritable, but there is a lot of denial out there, and a lot of parental guilt when we say a condition is genetically inherited. I’ve talked to people who refuse to recognize obvious autistic traits in other family members besides the diagnosed child. I wouldn’t say every family with one autistic member has others, but having met hundreds and hundreds of people with autism, I think I can pretty accurately spot the traits, and some parents who are clearly on the spectrum still fervently deny any genetic component.
Leviton: You believe research into the genetic causes of autism is distracting from the need for services.
Silberman: I’m in favor of genetic research. Someday it may help develop drugs for epilepsy, which is a leading cause of death for autistic people. But spending another $50 million on screening the genomes of families with autistic kids isn’t taking care of autistic people and their families here and now.
Kids like Leo Rosa need better ways to communicate, yet there’s been hardly any research in that area. Instead most of the money is spent searching for an autism gene or for “environmental triggers” that might activate an underlying genetic predisposition. It seems as if there’s a new environmental trigger discovered every week. Just yesterday I received an e-mail asking what I thought about a correlation between autism and extreme weather events. A friend of mine, science writer Emily Willingham, got so sick of reading stories about the autism cause du jour that she wrote a blog post titled “This Just In: Being Alive Linked to Autism.”
Focusing solely on causes isn’t helping families. It’s more of a full-employment plan for academic geneticists.
Leviton: Some in the autism community have criticized you for not being more interested in the causes of autism. What’s wrong with looking into leads? One study shows that living near freeways in Los Angeles may be a factor in causing autism. A Danish study in 2015 indicates that circumcision may be linked to higher autism rates.
Silberman: I’m not saying it’s wrong to investigate those correlations. I’m saying it’s wrong to do that while families with autistic kids are left to twist slowly in the wind without sufficient support. Transition programs to help autistic teenagers get jobs when they leave school are almost nonexistent. As a society, we’re acting as if determining the cause of autism were more important than helping autistic people.
Leviton: What sort of support and spending do autism-advocacy groups want to see?
Silberman: Many autistic people want more options in housing and employment and the ability to make their own decisions. They also want to be included and consulted in the media discussions about autism. Imagine if every article about women in the workplace quoted only men. That’s how autistic people feel about media coverage. They want a place at the table when policy decisions are being made that will affect their lives. There’s so much focus on children that people forget about autistic adults. Images of cute kids are good for fundraising, but they render older autistic people invisible.
Parents wrestling with a child’s difficult behavior and a shortage of resources sometimes blame the autism rather than society for making their lives miserable. It’s as if a person who’s persecuted for being gay blamed his homosexuality for his troubles instead of a homophobic culture. That’s why so many early interventions for autism focused initially on suppressing the behaviors that lead to autistic children being stigmatized for acting “weird.” But the value of such interventions is an ongoing debate in the autism community.
Leviton: What are some of these interventions?
Silberman: The most commonly employed early intervention is applied behavioral analysis, or ABA, which was invented by a clinical psychologist at UCLA named Ivar Lovaas in the 1960s. ABA basically uses animal-training methods to train autistic children. Rather than eliminate the stigma around the child’s behavior, Lovaas focused on eliminating the behavior. His goal was to get autistic kids to stop flapping their hands and making noise, because he wanted to get them out of institutions. And that’s not a bad goal, but the way he pursued it was with electric shocks and aversion therapy. He argued that autistic patients should be exempt from the usual ethical considerations in regard to brutal forms of punishment and suggested families use cattle prods to punish their children when they did something bad. This was bad psychology, as well as being obviously inhumane, but Lovaas thought it was better to give autistic kids electric shocks at home than to lock them up away from their families. He didn’t think autistic people could survive as themselves in the everyday world. We now know he was wrong.
Lovaas did the same thing to gay kids, by the way: use punishment-and-reward systems to train them not to act gay.
ABA has changed since then and remains very popular. Many doctors and therapists still present it as the only hope. Parents are told that if they don’t get their child into ABA therapy early, they will miss a crucial window of opportunity. And it’s very expensive. There are other forms of intervention that are less expensive — and more humane — but ABA practitioners make so much money that the industry has a lot of influence. A kind of professional cult has arisen that attempts to marginalize every other approach.
The generation of autistic kids who underwent ABA as it was originally conceived by Lovaas have now grown up and are talking about their experience. Many were traumatized by it. Some autistic people who have been through strict behavioral training as kids experience post-traumatic stress.
Leviton: Is it a form of child abuse?
Silberman: I don’t want to make blanket statements about ABA in the present day, because there is a wide range of approaches among providers. Some ABA practitioners are oriented toward increasing the autistic person’s autonomy and treating him or her with respect. Others, not so much. Some use positive reinforcement and rewards. Others still use punishment. Some providers are still focused on Lovaas’s goal of making autistic people “indistinguishable from their peers” by eliminating behaviors like hand flapping and rocking back and forth — sometimes referred to as self-stimulation, or “stimming,” which helps those on the spectrum regulate their energy and anxiety levels.
Of course, autistic kids do need to learn self-care skills. In all fairness, if your child can’t tie her shoes or brush her teeth or wash her face, and there’s a therapy that will enable her to do those things, you’re apt to be thankful for it, even if it seems a little robotic. But is ABA the only way they can learn? No.
Barry M. Prizant, author of the book Uniquely Human: A Different Way of Seeing Autism, does a different type of intervention called SCERTS, which stands for Social Communication, Emotional Regulation, and Transactional Support. I think his communication-based approach is more humane than ABA. If a kid is having a meltdown, instead of asking, “What can we do to extinguish this behavior?” Prizant asks, “What in the environment is overloading the kid?” Perhaps the “meltdown” is actually a reasonable response to an unreasonable amount of incoming stimuli. Prizant’s intervention puts the autistic person’s experience at the center instead of viewing it as inconvenient or disturbing.
Leviton: I certainly have sympathy for parents who are so desperate for a solution that they will listen to medical authorities who recommend extreme measures.
Silberman: Parents have been subjected to many bogus theories, like one that says there’s a narrow window of opportunity in which a child’s social and language skills can develop. Some still labor under the misconception that if they miss that window, the kid is doomed. The idea that the brain becomes hard-wired after adolescence is used to convince parents that if they don’t get their kid forty thousand dollars’ worth of ABA right now, they are condemning him or her to never improving. But the human brain develops throughout our life span. I’ve had several autistic people tell me that their social skills improved in middle age. Temple Grandin, the autistic livestock-behavior expert whose life was made into a movie, and John Elder Robison, who wrote Look Me in the Eye: My Life with Asperger’s, both said that when they were sent on promotional tours, they developed new social skills quickly.
Leviton: Do you think Grandin’s accomplishments give a false impression of the capabilities of autistic people in general?
Silberman: I hear that a lot. Parents say, “My child is not like Temple Grandin.” But when Grandin was four, she wasn’t “Temple Grandin” yet. She was having meltdowns in church because the skirt she had to wear was scratchy; nobody knew about the sensory sensitivity that often accompanies autism. When parents offer examples of how hard their lives are, they often tell me that their children throw shit on the walls, and Grandin did that, too. She was expelled from several schools. Her mother was told that she should send her daughter away, but she refused to do it. One of the reasons Grandin became so accomplished is that she wasn’t institutionalized and got support for her special interest in animals. She is an example of what happens if you don’t mistreat autistic people.
I’m not saying every autistic person has the potential to become a Temple Grandin. Leo Rosa will probably need significant support for the rest of his life. But the range of possibilities is wide. There’s a saying in the community: “If you’ve met one autistic person, you’ve met one autistic person.” Virtually any generalization is going to be wrong. Not all autistic people are easily overwhelmed by sensory input, for example. Some love to ride roller coasters. Not all autistic people are uninterested in romance, as Grandin has said she is; some would love to go on a date but just don’t know how to ask someone out.
Leviton: You’ve attended Autreat, a convention run by autistic people, for autistic people. What was it like?
Silberman: Unexpectedly awesome. I was invited to attend Autreat while working on NeuroTribes. I would be one of the few nonautistic — or “neurotypical” — people there. The organizers knew I was a journalist working on a book and gave me permission to observe, but others assumed I was just a participant. When I first arrived, I waited to meet a group of convention-goers at a bus station so we could travel to Autreat together. I wondered what they would be like. Subdued? Rocking back and forth? They turned out to be the happiest-looking folks in the station; they were just so glad to see each other.
When we got to the retreat center, I felt some anxiety because nobody knew yet that I wasn’t autistic. For the first time since I’d been a gay teen in high school, I had to deal with “coming out” — this time as neurotypical. It went fine. On the way to my room at the retreat center, I saw a boy pulling his middle-aged mother down the hall. He seemed to be in distress: flapping his hands, screaming, running. I stepped outside to cry, it was so intense. I found out later that the kid was simply ecstatic to be at Autreat and to see his friends again.
I gradually acculturated to the environment the way I eventually got used to being in Japan when I visited. But it took a while. One night I met a guy named Craig, and the next morning I spotted him in the cafeteria and said, “Hi, Craig. How’d you sleep?”
“Why?” he replied.
It was a fair question. Why did I want to know how he’d slept? I was making neurotypical chatter, but my “friendly” small talk didn’t make sense to him.
Some people at Autreat were stimming — flapping their hands and rocking back and forth. I saw a couple rocking back and forth together while they held hands. They had met at a previous Autreat and gotten married. It was beautiful to watch.
I’m obese, but I wasn’t stigmatized for that at Autreat. Lots of people there looked unusual or behaved in unusual ways. They were free to let it all hang out, whatever “it” was.
The whole ethos of Autreat was “opportunity, but not pressure.” Though it was a conference, there was no expectation that you would go to even one event. If you mostly wanted to stay in your room, that was OK. I liked it there and became so used to the rhythms that when I left, the “normal” world actually seemed quite grating and loud.
Leviton: “Normal” in the U.S. is now an overstimulating environment in which we must block out as much as we can to get a few moments of rest and quiet.
Silberman: Yes, imagine how overwhelming it is for an autistic person.
Leviton: Are new technologies like tablets and cellphones proving useful for autistic people?
Silberman: Sure. Many autistic people find it easier to communicate via text. They can compose their thoughts at their own pace. In a sense, through the use of technology that encourages us to text instead of talking face to face, the world has become slightly more autistic. And maybe that’s no accident. People with autistic traits are often involved in the development of new technology.
Leviton: What do you think the future will bring for autistic people?
Silberman: There are some who fear a new kind of eugenics, certainly. We now use genetic information to prevent Down syndrome by aborting the fetus, even though we know many people with Down syndrome lead happy lives. As we gain more information about genetics, we might be able to detect autism in utero. If so, will we start selectively aborting autistic babies? I think that would be dangerous, because autism seems to come alongside traits we want to cultivate.
A test to detect autism would be hard to develop, however, because of the complexity of the gene combination required to produce the condition. It’s estimated that six hundred to a thousand genes play a role in autism. At least some of those genes seem to be related to skills in fields like science and math.
Environmental factors may also contribute to autism, such as parental age. Several studies point to the possibility that older couples have a greater chance to produce an autistic child. Because of economic and social shifts, couples in the U.S. are waiting longer to have children than they did in my parents’ day. This could be causing a small increase in autism rates.
The problem with running down an exhaustive list of environmental risk factors for autism is that there have been literally thousands of them: pesticides, phthalates, Wi-Fi, air pollution, antidepressants in the water supply, and on and on.
The stark truth is that even if you drink only distilled water from glass bottles (to eliminate the endocrine-mimicking chemicals that leach from some plastic containers), stop eating tuna (to avoid mercury), and shut down your Internet router, the primary factor that will determine whether your child is born with autism is genetics.
Of course, all pregnant women should be well nourished and receive good healthcare — which will be less likely if the Trump administration succeeds in repealing the Affordable Care Act and shutting down Planned Parenthood. Beyond that, none of the alleged risk factors that continually pop up in the news — and then quietly disappear when the preliminary studies can’t be replicated — seems to be decisive.
Leviton: You have championed the term neurodiversity. What does it mean?
Silberman: The word was coined by a sociology student in Australia named Judy Singer. She was a member of one of the first online social groups for people on the autism spectrum. Once these people found each other, they learned that not all their problems with daily living could be blamed on autism. Some were failures of society: for example, the bullying that almost all autistic kids experience.
Singer had a mentor who had survived polio and used a wheelchair. He introduced her to what’s called the “social model of disability” — that is, seeing disability as a relationship between the individual and society. She noticed that terms that include “disorder” were inherently pathologizing. Singer wanted to come up with a term that would be judgment-neutral, or even positive, to indicate that these conditions can also convey gifts and advantages. She decided on “neurodiversity,” to draw a comparison with how biodiversity — having a variety of species — contributes to the overall resilience of the environment.
The word neurodiversity has spread through the autism community like a rallying cry, the same way that phrases like “Black is beautiful” and “Gay is good” lifted the spirits of those communities a generation earlier.
There’s a saying in the community: “If you’ve met one autistic person, you’ve met one autistic person.” Virtually any generalization is going to be wrong.
Leviton: One autistic blogger attacked you for comparing the autism movement to the gay-rights movement. He wrote that, for him, it wasn’t a question of civil rights; he was severely disabled.
Silberman: The problem is that autism is a very serious disability, but we’re not treating it like one. We’re treating it like a disease of the modern era that has a cause and a cure. As I just said, the level of someone’s disability is not an absolute quality. It’s a description of the relationship between the person and society. If someone who uses a wheelchair lives in a town with no ramps, no wheelchair-accessible bathrooms, and no elevators, his or her life is worse for it. When we say people are “disabled,” we’re saying they have challenges and limitations, but we’re also describing our society’s failure to meet their needs.
The notion of “impairment” can go both ways, too. I’ve noticed that although autistic people are allegedly bad at reading body language and tone of voice, they are good at reading each other’s body language and tone of voice — something that you and I would struggle with. If an autistic person seems to be looking away, you might conclude that person isn’t interested in what you’re saying, but he or she might be listening to you more closely by looking away.
I met an autistic man online, and we agreed to meet at a coffee place. While I was with him, I thought he wasn’t enjoying my company. He was frowning and appeared uncomfortable. By the time I got home, though, he had e-mailed me to ask when we could do it again. I hadn’t read him accurately at all.
This guy, by the way, is very witty. He was actually diagnosed by Leo Kanner himself, and he likes to say, “Kanner told my mother to put me in an institution. So she did: Yale.”