Steve Silberman is the author of “NeuroTribes” and the Saturday keynote speaker at the Autism Society’s annual conference in New Orleans. We asked him some questions about the book and what he learned from researching it. Here are his responses:
- You focus some early sections of the book on famous and some not-so-famous people who may have had autism, based on idiosyncratic behavior. Why is it important to recognize that autism existed long before it had a name?
It’s important to recognize that autism existed before it had a name because autistic people in previous generations have been rendered invisible by a series of historical events and misconceptions that produce the illusion that autism is a unique product of modern civilization. These misconceptions have had a profound effect on our research priorities, resulting in autistic people and their families not getting the support and services they need while billions of dollars are spent on genetic fishing expeditions. Thus, as a society, we believe we’re taking the challenges of autism seriously, while leaving families to twist in the wind.
For example, people who continue to claim that the MMR vaccine or mercury-based vaccine adjuvants triggered a global autism “epidemic” — despite all the scientific evidence to the contrary — insist that autism didn’t exist before Leo Kanner started examining patients in the late 1930s. Kanner himself would have strongly disagreed with this. He knew he was seeing a condition that had existed in previous generations, even in previous centuries, but felt it had never been adequately described as a “unique syndrome” for his fellow clinicians. That was the genius of his landmark 1943 paper: describing the distinctive constellation of behaviors that add up to autism so vividly and indelibly that it instantly became visible to other clinicians.
In the mid-20th Century, however, there was a turf war between Kanner and other child psychiatrists who had also recognized this distinctive constellation of behavior, which resulted in thousands of autistic children being misdiagnosed with “childhood schizophrenia.” In the 1950s and 1960s, childhood schizophrenia was considered an epidemic in mental hospitals and state schools. Now we know that true schizophrenia is very, very rare in childhood; but the diagnostic criteria for childhood schizophrenia were so close to the criteria for what we now call Autism Spectrum Disorders that they were eventually imported wholesale into the autism literature. The alarming hockey-stick graphs all over the Internet showing a dramatic spike in diagnoses in the 1990s — which understandably terrify parents — do not take this into account. If you included the number of children who were misdiagnosed with “mental retardation” or “childhood schizophrenia” in earlier decades, those graphs would be a lot less alarming, and we would understand that, in fact, there are thousands of adults who were never diagnosed with autism out there who still need our help.
- You focus in depth on some of the giants in the autism field: Leo Kanner, Ivar Lovaas and Bernard Rimland, to name just three. In each case, you say they went astray and may have hurt the movement to some degree. Has progress in autism research and treatment been held back by failed theories and false prophets?
Sure, absolutely. A witty British guy once described my book in social media as “a history of autism bollocks” — a rundown of all the misguided theories (such as Kanner’s notion of “refrigerator” parenting, which Bruno Bettelheim elevated into a national obsession in his bestselling book The Empty Fortress) that caused so much suffering for autistic people and their families. And now, of course, the most prominent false prophet in autismland is Andrew Wakefield, who has been totally discredited by his peers and stripped of his medical license in England, yet is still grabbing headlines for his propaganda film Vaxxed. But it’s important to remember that people like Kanner, Rimland, and even Lovaas went into the field with basically good intentions. Lovaas — who literally tortured autistic children with electric shocks — thought these brutal “treatments” designed to punish and extinguish behaviors like stimming were the only way to prevent autistic children from being warehoused in state institutions. That’s the epic human tragedy that my book describes in depth: clinicians with basically good intentions inadvertently creating tremendous amounts of pain and isolation for autistic people and their families by pursuing misguided quests, even in the face of evidence that contradicted their theories.
- There are others in the book who come off as heroes and truth-tellers: Lorna Wing and Ruth Sullivan fit this category. Are they examples of parents and professionals who served the movement without going off on improbable tangents such as aversives and vaccines?
Yes, absolutely. I would say that Lorna and Ruth are two of the most unambiguously heroic figures in my book. Their experience as mothers gave them invaluable insights into their children’s minds that enabled them to realize very early that many of the prevailing theories of autism were nonsense. (In an interview shortly before she died, Lorna told me that she knew Kanner’s theory of refrigerator parenting was “bloody stupid.”) They both worked tirelessly to improve the quality of life for autistic people and their families, and their contributions deserve nothing less than profound admiration and gratitude.
- You write that people with autism often have great talents, particularly in areas such as science and technology. Why do you feel that connection exists?
Well, I’m not sure I would say it that way. I would say that some people with autism have great talents in these areas, just like some neurotypical people have talent in these areas. And it’s crucially important that the talents of autistic people be recognized, supported, and cultivated so that they can live happier, more engaged, and more productive lives. But after reading thousands and thousands of case histories and clinical accounts — as well as talking to hundreds of autistic people and their families — it’s clear that there is a curious affinity between some autistic people and fields like math, science, art (particularly visual art and music), and technology. This affinity can take many forms, ranging from coming up with world-changing discoveries in science (as Henry Cavendish and Paul Dirac did) to a consuming passion for LEGO and video games (as many children and parents can attest). I would say that one of the major misconceptions standing in the way of nurturing these interests and talents is the notion that autistic people are divided into those with rare “savant” talents and those with no talent at all. Yes, some autistic people, like the artist Stephen Wiltshire, have gifts that are nothing less than awe-inspiring. But there are many, many more autistic people — including some who are non-speaking — who could make significant contributions to their communities if they were given appropriate tools for communication, and placed in environments where they didn’t constantly feel confused and overwhelmed. I would say it’s more important to focus on nurturing and encouraging the modest gifts of the majority of autistic people than it is to single out the rare geniuses. I once wrote a profile of a kid with PDD-NOS named Matt Savage, who was presented to me by a noted autism expert as “the rarest of the rare” — an autistic savant with creative abilities. Now, he’s just a very, very talented and incredibly sweet young jazz pianist who makes brilliant, swinging records. What does Matt need to grow into happy middle age while thriving creatively in a very demanding field? That interests me more than framing him as a clinical curiosity.
- There is a theme running through the book that autism and other forms of intellectual or developmental disability are just another form of humanity. Does that mean they should be celebrated, and not “cured” – or even treated?
I completely understand why many parents — particularly those of newly-diagnosed children — would be attracted to words like “cure” and “recovery.” If your beautiful 3-year old daughter is banging her head on a wall until it’s bloody, and seems completely unreachable, who wouldn’t try to find hope in a word like “cure”? But I also think those words have had a pervasively toxic effect on the autism community by encouraging false hopes, which leave already stressed parents vulnerable to all manner of hucksters hawking all manner of bogus treatments, from “holding therapy,” which was all the rage in the 1970s, to dangerous and expensive “treatments” that are still popular in some circles today, like chelation.
Autism is a highly complex condition caused by the interaction of multiple genetic and environmental factors. We’ve been looking for a “cure” for schizophrenia for decades and we haven’t found it. What we have are drugs and forms of talk therapy that can help make some of the core features of schizophrenia more manageable (often with significant side effects, in the case of the drugs). I think we’re eventually going to come to the same place with autism. So the question is, what can we do as a society, starting now, to make the lives of autistic people and their families more rewarding and secure? That’s why I focus instead on the need to support families and to create accommodations in schools, workplaces, and public life for people with cognitive disabilities. The relentless focus on causes and cures — which is reflected in the federal research agenda — is like saying, “Who cares about wheelchair ramps and accessible classrooms? Someday science will enable everyone to walk!” Imagine if we treated people with physical disabilities that way. That’s how we’ve been treating people with cognitive disabilities. Instead of promoting false hopes, we should be nvesting in research to find better seizure-controlling drugs, because epilepsy is one of the leading causes of death for autistic people with intellectual disability. Chronic anxiety is another significant problem for people on the spectrum. In addition to researching better drugs for controlling anxiety, I believe we should be designing environments that are less stressful for autistic people, while working as a society to eliminate the kinds of brutal bullying that nearly every autistic person experiences in childhood.
- Your emphasis on high-functioning individuals with autism may leave some parents wondering if they have “missed the boat” – that their more profoundly affected children could be doing better. Should they feel this way? Or are there different levels of progress?
I’m really puzzled by the notion that my book focuses primarily on “high-functioning” individuals. The most in-depth description of an autistic child in the book is Chapter Two, a 40-page description of the life of Leo Rosa – a kid with very limited expressive vocabulary who is occasionally self-injurious and wore diapers much longer than most typically-developing kids. He also happens to be a wonderful kid with extremely supportive parents who went through the whole cycle of being initially horrified by his diagnosis, getting all kinds of dire predictions about his future, and spending thousands of dollars on alternative treatments that didn’t work, before finally coming to the conclusion that what they needed to do was to give Leo the best life they possibly can. I depict other autistic kids as chewing through their own limbs and running naked through the halls of institutions. These passages in the book make for very painful reading — but I have to assume that the handful of people who accuse me of “whitewashing” autism either skipped over these parts, or have another agenda for lying about my book that way.
Yes, I also talk about autistic people who are capable of going to college, getting a job and an apartment, and participating in self-advocacy organizations with the aim of improving the quality of life for people all across the spectrum and their families. What I don’t do is use the labels “high-functioning” and “low-functioning” unless I’m quoting someone else, because I think these terms obscure more than they reveal. People who are branded “high functioning” are often struggling more behind the scenes than is obvious to the casual neurotypical observer, while people who are branded “low functioning” often have more potential than is obvious, which could be brought out if they were given appropriate means of communication. I was really curious when one blogger claimed that I had only written about “low functioning” people on nine pages of the book, until I realized that she had simply flipped through the index and found the term “low functioning” on nine pages, for the reasons I just described. That’s just lazy and dishonest. What I don’t do is present the lives of autistic people as unrelenting horror stories full of nothing but despair and hopelessness. If you want a book like that, there are no shortage of them on the market. That blogger finally admitted in the comments section that what she really took issue with was that I hadn’t portrayed enough parents who “hate their children’s autism.” That was a very conscious decision on my part, because there is a large body of research on the families of disabled children that shows that one of the key factors that determines the quality of life for these children and their families is the way they frame their child’s disability — not how profound the child’s disability actually is. In other words, if you’re a parent who believes that your child’s life is doomed and hopeless, and that you’ve been cheated out of the chance of having a “normal” child, you’re miserable, and you make your child miserable in the process.
Of course, I would never want a mom or dad to feel like they “missed the boat” if their child never turns out to be capable of living independently. The parents of autistic children have done heroic things for generations to give their children a chance at a better life, even when they were being blamed and stigmatized by trusted “experts” for causing their children’s autism. The parents in my book are heroes, including Leo’s parents Shannon and Craig. But even in the face of the most intense efforts, some people on the spectrum will never be able to care for themselves. That’s why I focus so much on the need for more support for families, better housing options, more transition programs for when kids “age out” of services, and so on. Parents need real reasons for hope, not false promises of recovery. Yes, some kids will eventually “lose the diagnosis” — but what then? Will they lose all need for extra support and accommodations? No. They’ll still face challenges in their daily lives, and may end up diagnosed with something else, like ADHD or chronic anxiety.
But one thing that has become very clear to me is that you can’t predict what your child’s life will be like in middle age based on their behavior as infants, and you should never give up hope of improvement, even later in life. I’ve heard some parents say online, “My child is not like Temple Grandin!” Well, Temple Grandin was not like Temple Grandin when she was four years old either. She was self-injurious, prone to tantrums, flinging her poo, and would eventually get kicked out of multiple schools for unruly behavior. Now she’s one of the leading industrial designers in her field, and she says that she went through periods of significant social development in middle age. John Elder Robison, the author of great books like Look Me in the Eye, also talks about this. The challenge of being an autism parent is maintaining hope for your child’s future while realistically acknowledging the challenges they face and working as hard as you can to mediate those challenges. One of the most gratifying comments I’ve gotten came from a young father who came up to me after a talk in Los Angeles and said, “It never occurred to me to see my beautiful boy as diseased, damaged, or inferior. But your talk gave me permission to love him as he is.”
- “It was there before” – Leo Kanner’s theory that autism has been with us all along, and possibly in the numbers we are seeing today — is tantamount to heresy among those who claim we are witnessing an “epidemic” of autism. Do you feel most of the increase is just better recognition and diagnosis? Is there little or no basis for believing that the numbers really are rising?
Why are we using theologically loaded terms like “heresy” to talk about scientific data? This is not a matter of faith or belief, no matter how sincere or deeply felt. Yes, I believe that better diagnosis and recognition are behind the huge increase in numbers that began in the 1990s and is finally leveling off today, as prevalence estimates approach the true incidence of autism as it is currently defined. I’m hardly alone in that belief. That’s the current opinion of most autism epidemiologists. If there are any increases on top of that, there’s plenty of research to point to social factors like increasing parental age as possibly contributing to a small “secular” rise in autism in recent years.
I understand why some parents, and fundraising organizations like Autism Speaks, were so eager to embrace the notion of an “epidemic.” For decades, the desperate concerns of autism parents were sidelined and ignored because the condition was mistakenly believed to be so rare. Science was practically at a standstill for decades in the United States, which was a national shame and a tragedy for families. That’s why ASA co-founder Bernie Rimland became determined to turn his parents’ network into an alternate infrastructure for autism research.
One thing that’s clearly needed is a study of the prevalence of autism among adults in the United States. It’s utterly astounding to me that such a study has never been done here, after a couple of decades of angry arguments about whether or not there’s a true increase. The only presidential candidate who has called for that kind of study is Hillary Clinton. But it shouldn’t be a partisan matter; it should be a top federal research priority. Why? A study like that was done in the U.K. in 2011 by a professor named Terry Brugha and his colleagues, and their conclusion was that autism is just as prevalent among adults — though it’s often unrecognized — as among children. “The lack of an association with age,” the researchers concluded, “is consistent with there having been no increase in prevalence and with its causes being temporally constant.” In other words, there’s been no “tsunami,” and we should be putting efforts into supporting autistic adults as well as kids. This is not some wacky opinion I came up with by talking to autistic self-advocates; it’s mainstream science. In fact, if there has been any secular increase at all, what my book does is remove a tremendous amount of statistical noise from the equation caused by Lorna’s dramatic expansion of the diagnosis — which, by the way, captures more autistic people with profound intellectual disability as well as chatty Aspies — and the massive increase in public awareness, for which organizations like ASA deserve credit. Instead of having theocratic arguments about “heresy,” we need to start building a better world for autistic people at all levels of ability, because their parents shouldn’t have to lay awake at night worrying about what will happen to them after they die. That’s what Ruth Sullivan focused on in the early days of ASA, and it’s time to carry her work and her passion into the 21st Century.