The following is a blog post by one of our readers. After reading some of our previous blogs Jill promised to write her own criticism of Neurotribes. Given her full time endeavor as a mother of 2 autistic children writing is a luxury and it took her longer than expected. She emailed me several days ago alerting me as to her blog and allowing me to post it within Corticalchauvinism.com. Jill, as many parents of autistic individuals, take exception to the fantasy tale spun in Neurotribes and to the possible deletirious consequences of the same.
Jill Escher is an autism philanthropist based in Silicon Valley, specializing in research examining factors playing a role in the heritability of autism. She is also the mother of two children with nonverbal autism, a provider of low-income housing for adults with developmental disabilities, and president of Autism Society San Francisco Bay Area, a nonprofit focused on the mounting adult autism crisis. The Escher Fund for Autism’s latest RFP, “Exogenously Induced De Novo Germline Errors (Genetic or Epigenetic) in the Etiology of Autism Spectrum Disorders” can be found here. Learn more at jillescher.com.
by Jill Escher
You’ll have to pardon my tardiness in penning a review of the book NeuroTribes by Steve Silberman. With two autistic children and several jobs, analyzing books that get so much wrong about autism is an endeavor that tends not to top my priority list. But this tome attempting to reinvent the history of autism has unfortunately generated a great deal of interest in some circles, warranting at least some, however belated, response to help correct at least a few of its more grievous errors.
But first, let me say something nice. The book is clearly an attempt to create a positive narrative about a disability that has caused tremendous panic and confusion in the public mind. As the mother of cherished children with severe, nonverbal forms of autism, I could not agree more that people disabled by this mysterious condition are a terribly special breed, even if their brains may be short-circuited in some way, or at least not wired for “normal” thinking or behavior. They deserve society’s full respect, acceptance, and support, period.
Also, as the book delves into the dark past of how society treated those with cognitive disabilities, it excels in reminding us of when “feebleminded” people even quite a bit less functionally impaired than my children were viewed as “life unworthy of life,” “useless eaters,” or “human ballast,” and routinely mistreated, left to rot in institutions, or worse. It also does a solid job of questioning behavior modification as an autism treatment, and rehashing the history of the disproven vaccine hypothesis of autism.
Unfortunately, the book’s welcome elements are overshadowed by its abundant and serious flaws. I’ll discuss just two, but before I do let me offer a brief Cliffs Notes for those who have not read it. NeuroTribes sees autism as a natural condition, a form of neurodiversity harboring both challenges and gifts that is caused solely by age-old genetic variants; it posits that autism rates have not increased over time, but rather the surge is merely an artifact of shifting diagnostic labels, service grabbing, and greater awareness of the post-Rain Man age; it argues that society needs to merely accommodate this somehow formerly hidden mental disability rather than looking for causes or treatments. In order to justify this smiley-faced world view, Silberman serves up heaping platters of misinformation and illogic, as it must to reach such extraordinary conclusions. Let me explain.
First, the book relentlessly trivializes autism and the permanent, serious disability it entails by expanding its definition to the ends of he universe. He sees autism is a “strange gift” pervasive in the realm of quirkies and eccentrics, including science fiction fans, university professors, computer programmers, anyone with a prodigious memory, nerds, brainiacs, little professors, math geeks, amateur radio enthusiasts, introverts, and an array of brilliant, enterprising and competent people like scientist Henry Cavendish, inventor Nicola Tesla, inventor Hugo Gernsbach, and a psychiatrist who pioneered his profession’s Diagnostic and Statistical Manual, among many others. The members of this autistic tribe are uninhibited thinkers who “sketched out a blueprint for the modern networked world,” and “anticipated developments in science.” Before the past two decades or so, these were “Adults wandering in the wilderness with no explanation for their constant struggle” until the definition of autism ostensibly expanded to include them and confer on them a special identity, mode for self-understanding, and rhetorical platform on which to demand therapies and societal accommodations.
In defining “autism,” it appears that Silberman and I cannot possibly be talking about the same disorder. I read that “Autistic people are now taking control of their own destinies” while my nonverbal children, with their 30-40ish IQ levels, were shredding my bedsheets, destroying their iPods, shrieking, and jumping around naked. Am I just stupid for somehow missing their hidden ability to control their own destinies and invent modern networking technology? I know hundreds of people with autism, and as much as I adore and value them, almost none of them stand any chance of true independence or controlling their own destinies, let alone attaining stunning achievement in the sciences, or any other discipline for the matter.
Yes, I will agree there are some on the mild end who can function fairly independently, but as a hallmark of their disorder often can’t hold a normal conversation, make normal eye contact, make friends, execute solid judgment, negotiate public transportation, fend off abuse, read subtle social cues, vary a routine, and/or hold a job. Even this form of so-called “high-functioning” autism is debilitating, with most individuals needing at least some form of lifelong supervision and support. But for the most part, people with autism are even more incapacitated, such as my friend’s 12 year-old son who regularly attacks his parents and siblings and typically spends his days flicking pieces of string in front of his face. Or my friend’s 18 year-old son who can have a brief conversation but is now 6’ 4” and easily slips into rages involving things like hurling televisions across a room. My friend’s autistic daughter, 17, has some words but cannot attend to her own menstrual periods or personal hygiene, and defecates on her floor. Silberman from time to time touches on these forms of autism, which comprise about half of the spectrum, but usually only to defend the way parents have accepted them instead of trying to change them.
Even if clinicians are wildly over-diagnosing mild social impairments as autism, as Silberman contends, there is no evidence in the literature that non-autism diagnostic fakery is driving the increase in diagnosis. Indeed, research shows that only a small fraction of autism cases appear to lose the diagnosis, maybe 7-13% of cases, and even then the subjects are typically left with other serious behavioral or cognitive challenges such as ADHD. Within the walls of clinicians’ offices, autism is no Geek Syndrome, but a markedly impairing pathology that manifests in early development and persists throughout life.
The second failure is the book’s breathtakingly confident but absurd conclusion that there’s no true increase in autism. The autism epidemic is nothing more than an “optical illusion” as Silberman stated in a radio interview. In his view, “Asperger’s Lost Tribe” of brainy goofballs populate the bulk of the increase in the autism numbers, with the remainder more impaired cases merely resulting from a shift in labels from “childhood schizophrenia” and “feeblemindedness” to “autism.” While the diagnostics have shifted a bit over the decades, the essential characteristics have not expanded to a “rainbow of a million colors” based on a “veritable banquet of options,” as Silberman puts it. Autism under any regime is a permanent, serious mental disability with criteria based on significant impairments solidly outside the norm of human mental and behavioral development.
When talking about autism growth, it’s fundamental to compare apples to apples, and even among the more classically impaired subset, the numbers have skyrocketed, an area Silberman conveniently omits. For example, as a Californian, it would have been natural and easy for Silberman to have obtained and analyzed our state’s autism data, which is widely regarded as the best in the nation. If he had bothered to look, here’s what he would have found.
Since the 1970s, California’s Department of Developmental Services (DDS) has included residents with autism, limited to those deemed developmentally disabled and in need of lifelong care owing to their very significant functional limitations. In other words, it includes only the more severe end of the spectrum, and excludes by definition anything like an “Asperger’s Lost Tribe” of intellectually intact social misfits. Though DDS does not include all people with developmental disability-type autism, as not all families have sought services for their disabled family members, it is generally agreed that the system represents the vast majority of cases, particularly among adults. Notably, DDS autism cases represent only about 59% of same-age autism cases identified through California’s special education system, which employs a broader set of criteria.
So, what sort of autism growth has the DDS system seen? Even as DDS has enacted more restrictive eligibility requirements, developmental disability-type autism cases have unequivocally skyrocketed, beginning with births in the early 1980s. DDS now adds about 5,000 autism cases per year, up from about 200 per year just three decades ago. The total DDS autism population now exceeds 83,000 cases, up from about 3,000 25 years ago. And even if one presumes that the system’s mild decline in cases of intellectual disability is due to reallocating those cases to the autism category, this modest shift could not begin to account for the torrential surge in autism cases.
Furthermore, to agree with Silberman’s argument, you would have to believe that somehow California’s robust DDS system, regarded as the best and most encompassing in the nation, missed many tens of thousands of cases of one the most incapacitating and obvious mental disorders in the history of humanity. You would have to believe that languishing in attics and basements throughout the state today are tens of thousands of obviously impacted neurodevelopmentally disabled autistic adults who cannot care for themselves but were somehow never picked up by a system designed to find them and serve them.
Staff and service providers in our state’s system have been emphatic with me and other community leaders that there is virtually no chance of any appreciable number of DDS-eligible autistic adults, particularly over the age of about 30, not yet identified by our system. DDS-eligible autism cases are even more striking and obvious than mere intellectual disability, and more disabling in their features. There is zero evidence anywhere of a vast horde of DDS-eligible but undetected adults with autism in California.
A few years ago when sharing my astonishment about autism epidemic denialism with one of the top officials at DDS, who had worked in the system for decades, he explained that “the people we used to routinely place in institutions were rocket scientists compared to the people coming into the system today.” In other words, people served by the system tended to have milder functional impairments than seen in the glut of autism cases entering the system today. The agency, in a state of shock more than a decade ago when the autism caseload reached a most unexpected 16,000 (laughably small by today’s numbers), erected more stringent, not broader, entry criteria. What’s happening in California, our nation’s most populous state, and the one with the best autism data, is precisely the opposite of what Silberman contends.
At an event last week I spoke with the gentleman who first proposed in the 1970s that autism be included in the California DDS system, which in its early decades had been restricted to categories of mental retardation, cerebral palsy, and epilepsy. “People didn’t think it was necessary or of much importance,” said the long-time DDS employee. “There were just so few cases of autism back then.” Silberman would shrug off this gentleman’s observation with the justification that “Autistic people in previous generations were hard to see.” But let me be clear: nothing about developmental disability-type autism, then or now, is or was hard to see. Please come visit DDS autism clients if you think differently. Ask any clinician or teacher if they were just blind to autism back in the 1960s, 70s, and 80s. As my 17 year-old son shreds his shirt, and eats sticks, grass and foliage as we hike while tapping furiously at his broken iPod, you tell me that anything about autism is hard to see. As you try to engage with my almost 10 year-old nonverbal daughter in conversation and she doesn’t even seem to notice you are there, tell me again that autism is oh so hard to see.
Likewise, it’s striking how the book glances at but then dismisses evidence that autism was once incredibly rare. For example, it acknowledges that Leo Kanner, the nation’s foremost autism expert for decades after he published a seminal paper in 1943, said he had seen only 150 true cases of autism in his entire career, or 8 patients a year, while fielding referrals from as far away as South Africa. Silberman accuses Kanner of artificially restricting autism to a narrow set of severe mental infirmities, denying the right of the Asperger’s Tribe to the same label. But there is no doubt that Kanner would have recognized my nonverbal, food-tossing, paper-shredding kids as autistic, or most of the other 83,000 now in the California DDS system. Silberman states that Autism Society founder Bernie Rimland’s “family pediatrician who had been in practice for 35 years, was at a loss” to diagnose his son Mark, as he had never before seen a case like that. I have found this to be true with every long-time pediatrician with whom I have spoken. It was extremely rare for them to encounter the patently abnormal neurodevelopment of autism — under any label— until roughly the 1990s. But Silberman, always unwavering in this commitment to the idea that the vast majority of autistic children were just hidden behind other labels, implies the entire medical field, including Mark’s ignorant pediatrician, were engaged in sort of mischief around labels instead of noticing truly increasing numbers of cases. Meanwhile, autism has grown to such massive proportions that, at least according to one study out of UC Davis, its burden on the American economy could exceed three percent of GDP in ten years. One mental disorder = 3% GDP. Did you read that?
Apart from its discounting of autism data, and our collective historical memories, even more unforgivable is the book’s misleading attempt at a scientific denouement about the always-been-here nature of autism. After its long haul through historical alleyways of questionable relevance it arrives at this statement on page 470:
“In recent years, researchers have determined that most cases of autism are not rooted in rare de novo mutations but in very old genes that are shared widely in the general population while being concentrated more in certain families than others. Whatever autism is, it is not a unique product of modern civilization. It is a strange gift from our deep past, passed down through millions of years of evolution.”
(Emphasis mine.) For this sweepingly confident conclusion, Silberman cites to a single paper, Gaugler et al 2014, “Most genetic risk for autism resides with common variation,” Nat Genet. 2014 Aug; 46(8): 881–885, that speculates, based on statistical methodologies and not direct evidence, that 54% of cases of autism in Sweden may stem from yet-to-be-identified heritable genomic variations. The study did not actually show that the common variations actually caused autism, and did not look at ancestral genetics. And even if you take the study as hard fact, which it is not, it still left 41% of the Swedish autism cases unaccounted for. As always, however, the book skirts or ignores what this very limited study actually says.
And worse, the “genes from the deep past” idea is just not true. Evidence is mounting that much of autism is likely attributable to a wide variety of de novo genomic glitches present in the affected children but not their parents. Yuen et al (2015) reported striking findings of heterogenous de novo mutations even among ASD sibling pairs, Iossifov et al (2015) reported that half of autism cases are likely caused by de novo genomic mutations. And just last week Brandler et al found a surprising variety of spontaneous mutations, including simple deletions or insertions and “jumping genes” likely contributing to autism risk.
So, are my children’s abnormal brains a “valuable part of humanity’s genetic legacy,” per NeuroTribes, or the result of some intervening factor that damaged the genes from which they are derived? I would strongly argue the latter. If I had to place bets about the heritable source of my children’s strikingly abnormal neurodevelopment I would put all my money on my own (and therefore my vulnerable eggs’ own) 1965 prenatal exposures to extreme doses of synthetic steroid hormones and exactly zilch on the Silbermanian notion of “strange gift from the deep past handed down through millions of years of evolution.” I’ve found innumerable autism parents with similar stories, be it our fetal exposures to pharmaceuticals, drugs, cigarette smoke, or otherwise. This “intergenerational effects” hypothesis is an emerging area of research, with the skewed history of our germ cells finally being put under the proverbial microscope. If you would like to learn more about this hypothesis, please visit my website germlineexposures.org.
But enough about developmental biology. Before I close, let me finally highlight the strangeness of the book’s closing paragraph:
“With the generation of autistic people diagnosed in the 1990s now coming of age, society can lo longer afford to pretend that autism suddenly loomed up out of nowhere, like the black monolith in 2001: A Space Odyssey. There is much work to be done.”
(Emphasis mine.) Huh? Did I read this correctly? We have a crisis today because we have been pretending that autism barely existed in previous generations? Our autism housing programs, day programs, social services, and schools are pretending they are bursting at the seams with droves of mentally disabled people they never used to see? An entire generation of supremely disabled autistic young adults with nowhere to go, nowhere to live, no one to care for them, because we failed to identify these same supremely disabled people now in their 30s, 40s, 50s, 60s, 70s, and 80s? But I guess I should not be surprised at the book’s last gasp, since under Silberman’s simplistic and boundless logic, we could have 50%, hey 80%!, of our children flapping, jumping, grunting, nonverbal, and diagnosed autistic today, and they all would necessarily arise from mere shifting views of autism, and we would also necessarily have missed millions of similarly incapacitated adults. To Silberman, there is no other explanation.
In closing, NeuroTribes is a phase—some complacency-manifesto-wreckage on the road toward progress in the understanding of this explosion of abnormal neurodevelopment we call autism. While I believe that like many trendy autism mishaps before it, NeuroTribes, too, shall pass, I also fear it may do lasting damage to our society’s collective quest for the truth about this extremely serious explosion of brain-based disability.