PDF Summary:NeuroTribes, by Steve Silberman

Have you ever thought about what it’s like to exist in a world that’s not designed for your brain? People with autism experience that every day, and whether you or someone you know is autistic or you’re simply curious about autism, NeuroTribes can help deepen your understanding of this condition. In NeuroTribes, award-winning writer Steve Silberman explores the history, characterization, and evolving societal perception of autism.

In our guide, we’ll explain what autism is and describe the history of our clinical understanding of the disorder. We’ll also explain how the 20th-century eugenics movement impacted autistic people and early research on autism, and we’ll describe the work of researchers like Leo Kanner and Bernard Rimland. Lastly, we’ll discuss treatments for autism, including those that Silberman identifies as the most effective: community and social accommodations. Our commentary will add research that clarifies and expands on—as well as challenges—Silberman’s ideas and the historical narrative he presents. We’ll also include other experts’ suggestions for how society can better help autistic people thrive.

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Asperger suggested that autistic people have always made important contributions to culture and human progress, and he argued vehemently in favor of their value as human beings.

Is the Focus on “Deficits” a Thing of the Past?

Some people today still argue that autism is defined by deficits and criticize Silberman for his portrayal of autism as a strength in any way. Writers like Jill Escher, president of the National Society for Severe Autism (NCSA), argue that autism is universally characterized by visible, severe disability and that people whose disabilities are less noticeable aren’t actually autistic. Escher also contends that autism isn’t passed down from parent to child but is instead the result of genetic mutations potentially caused by things like exposure to general anesthesia.

However, others criticize those like Escher and the NCSA, suggesting they lack expertise and promote bigoted views about autistic people and other marginalized groups. They also note that the NCSA has no autistic people on its board. Neurodiversity advocates emphasize the importance of having autistic people represented at every level of such organizations to ensure their work truly helps autistic people and advocates for their human rights.

How Society Viewed Disabled People: The Eugenics Movement

While Asperger and many of his colleagues saw disabled people as valuable humans who deserved basic rights, many at the time believed otherwise, explains Silberman.

In the years following World War I, many people in America began to adopt eugenicist views. Eugenics was a pseudoscientific movement devoted to creating the ideal human by stamping out traits viewed as undesirable. Eugenicists believed that allowing certain groups of people to live and reproduce would cause a reverse natural selection process in which the worst elements of human nature would be passed on to successive generations while the best elements would be lost.

According to Silberman, eugenicists used a very strict definition of the “best” human qualities. Their idea of the “perfect” human was one who was white, of Northern European descent, physically and mentally able, and free of all disease. This excluded Black people, Native Americans, Jewish people, and disabled people, among many others. They viewed disabled people as defectives and moral degenerates unworthy of life. Throughout the first half of the 20th century, many US states allowed health officials to forcibly sterilize people in mental asylums, prisons, and schools for mentally disabled children.

As these ideas spread to Germany, Silberman explains, they became the basis for much of the Nazis’ ideology and genocidal tactics. In the next sections, we’ll explain how Nazi Germany adopted eugenics and used it to justify their extermination of disabled people. Then we’ll look at how this shaped the way Asperger presented his findings on autism to the world.

How Eugenics and Forced Sterilization Persist Today

Eugenicist views and forced sterilizations continue to this day in many areas. For example, The Great Replacement Theory posits that white people are being systematically replaced by minorities—echoing the early 20th-century fear that “inferior” people would replace “superior” people. Some polls suggest that as many as one-third of Americans currently hold such a view, as well as more than 60% of the French population. This theory often stokes fears about immigration and has been linked to hate crimes and acts of terrorism against people of color.

Additionally, many US states continued to practice forced sterilization—especially on Black women—for decades after the laws allowing such sterilizations had been repealed. And in 2020, human rights groups filed a report against a private detention center for forcibly sterilizing people detained by the US Immigration and Customs Enforcement agency (ICE).

Nazi Germany’s Embrace of Eugenics

According to Silberman, though eugenicist ideology initially developed in America, post-World War I Germany quickly embraced these ideas. Silberman suggests that this is partly because World War I had cost the lives of a generation of healthy soldiers—young, physically fit males who embodied the eugenicist idea of the “perfect” human. People feared that this loss left a disproportionate number of “defective” people who would reproduce and reduce the overall quality of the German populace.

(Shortform note: For context on Silberman’s claim about Germans embracing eugenics because of the casualties from the war, estimates suggest that the death toll for German soldiers in World War I was over 2 million. Advanced weaponry and military tactics, as well as rampant disease, contributed to the massive number of casualties suffered on both sides.)

Hitler crafted his vision for a “perfect” society around these eugenicist ideas. As he rose to power, the German government legalized the forced sterilization of German citizens who had schizophrenia, epilepsy, congenital deafness, or alcoholism, among other conditions. (Shortform note: Along with these groups, many other people were targeted for extermination during the Holocaust. These included members of the LGBTQ+ community—such as gay people and trans people—as well as Jewish people, Roma people, political dissidents, and Jehovah’s witnesses.)

Throughout the 1930s, the medical field in Germany became overrun with Nazis. Many who opposed their ideology were fired or sent to concentration camps. Though many of his colleagues joined the Nazi party and helped them carry out the Holocaust, Asperger refrained from doing so, according to Silberman. He also refused to report his patients to the Reich Committee, which determined whether a disabled person would be euthanized—sometimes based on nothing more than a person’s score on an IQ test.

According to Silberman, Asperger tried to speak out in favor of the value of disabled people’s lives without overtly defying the Nazis—as we’ll see in the next section, he curated the results of his research to try to dispel the idea that autistic people were worthless—but the eugenicist belief that disabled people deserved to be exterminated prevailed.

New Evidence Suggests Asperger Was Complicit in the Nazis’ Euthanasia Program

Historical evidence uncovered after the publication of NeuroTribes has led some scholars to criticize Silberman’s heroic depiction of Asperger. Historian Herwig Czech argues that Asperger was an enthusiastic Nazi collaborator who believed strongly in eugenics. He also suggests that he intentionally and knowingly referred many children to a facility that euthanized disabled people.

Czech states that this evidence doesn’t invalidate or contaminate the research Asperger did on autism, but he emphasizes the importance of understanding this context when discussing Asperger’s work. Czech also thinks it’s unnecessary to eliminate the term “Asperger’s syndrome” from our lexicon since the research is still valid—though some argue otherwise.

Silberman has acknowledged this new research on Asperger and updated later editions of his book to reflect the evidence of Asperger’s complicity in the Holocaust.

Asperger’s Thesis: Consequences for Future Autism Research

In 1944, explains Silberman, Asperger published his thesis on autism. His goal was, in part, to demonstrate that autistic people could make valuable contributions to society in the hope that this would help spare them from the Nazis’ slaughter of those they considered “worthless.” Because of this, he chose to focus his paper on just four specific cases out of the hundreds of autistic children he’d studied. The children in these four cases had no severe impairments and displayed exceptional abilities in math and science. He tried to make the case that people with such abilities could be useful to the Nazis as code breakers.

According to Silberman, this well-intentioned choice had long-lasting, damaging consequences for the field of autism study: Whereas Asperger knew that autism wasn’t rare and that it was a broad spectrum, his published work made it seem like autism was strictly defined and not at all severe. This led other researchers to believe that the condition Asperger studied was a separate condition from autism. (It also later led to the development of the diagnosis of Asperger’s syndrome, now colloquially understood to be a subtype of autism, though it no longer appears in the Diagnostic and Statistical Manual of Mental Disorders, or DSM).

Asperger’s Narrow Focus: The Roots of “Aspie Supremacy”?

Asperger’s argument was that autistic people didn’t deserve to die because those with exceptional abilities could be “useful”— but some argue that this stance is problematic in its own right. This argument used the same logic as the Nazis’ eugenism: that a person’s “usefulness” to society determined their right to live. The unspoken corollary of that argument is that autistic people who didn’t appear to be “useful” (for example, those with severe impairments) did deserve to die. Such writers also link Asperger’s distinction to what’s now known as “Aspie supremacy,” or the perception that autistic people who appear “high-functioning” are superior to those who appear “low-functioning.”

Since “Asperger’s” has been removed from the DSM, some also argue that people who continue to use that term to distance themselves from the rest of the autistic community may be reinforcing the Aspie supremacist framework. However, many autistic people still identify strongly with the terms “Asperger’s syndrome” or “Aspie.” Some suggest that the specificity of the term can help more clearly convey an individual’s particular subtype of autism. And still others contend that we shouldn’t try to convey a person’s entire autistic profile with a single term and should instead use the term “autism” followed by a brief description of their individual experience of autism.

Leo Kanner: The Leading Autism Research in America

At the same time that Asperger was studying autistic children in Vienna and drafting his thesis, child psychiatrist Leo Kanner was studying autism in America. Silberman explains that Kanner was one of the most prominent psychiatrists in America, and his work on autism became the defining research for many years.

Though Kanner worked with some of Asperger’s colleagues (those who came to America to flee the Nazis), Kanner’s work never mentions Asperger’s. Silberman suggests that Kanner refrained from acknowledging Asperger’s research—as well as the research of others who’d studied autism under different names, like childhood schizophrenia—because he saw himself as the lone discoverer of autism.

(Shortform note: While Kanner never mentioned Asperger’s work, Asperger did mention Kanner on multiple occasions. However, despite the overlap in their research, the two men never met. Some historians speculate that this was because Kanner was embarrassed for copying some of Asperger’s work, or jealous that Asperger discovered the syndrome first. Others contend that they didn’t meet because both men genuinely believed they were studying entirely different conditions. Still others have argued that Kanner didn’t “steal” anything from Asperger. They instead suggest that the similarities in their work were due to the influence of Asperger’s colleagues who later worked with Kanner.)

The Differences Between Asperger’s and Kanner’s Approaches

According to Silberman, Kanner approached autism research differently than Asperger did, which led to discrepancies in their findings and—Silberman suggests—inaccuracies in Kanner’s. Silberman describes four main differences between Kanner’s and Asperger’s research: the age of the subjects, the range of their traits, the rarity and severity of their traits, and the belief in what causes autism.

Difference #1: Age of Subjects

While Asperger studied both children and adults, Kanner limited his study to very young children. Because of this, diagnostic criteria were limited to early childhood behaviors, meaning that teens and adults who weren’t diagnosed in childhood often went undiagnosed for the rest of their lives.

(Shortform note: Though we now know that autism is a lifelong condition, many adults still face difficulty in getting diagnosed. This is partly because the diagnostic criteria are based largely on observable traits in someone’s early childhood, which can be difficult to recount later in life. Additionally, people who make it to adulthood without a diagnosis tend to develop strategies for masking or compensating for their autistic traits. Though it can be difficult to get a diagnosis, it can help autistic people understand their experiences and access support.)

Difference #2: Range of Traits

According to Silberman, Kanner also ignored the individual differences between his patients and described autism according to very restrictive criteria. He viewed autism as a monolithic disorder with few or no variations—as opposed to the spectrum Asperger identified.

(Shortform note: The idea that autism always looks the same (and specifically, that it’s always characterized by severe deficits) persists to this day. Autistic people who don’t appear to have such deficits might be told, “You don’t look autistic”—a statement that, while it may be intended as a compliment, is considered an ableist microaggression by many autistic people.)

Difference #3: Rarity and Severity

Additionally, Kanner defined autism as being extremely rare and very severe, explains Silberman. This clashed with Asperger’s understanding of autism as relatively common and presenting on a spectrum. While Asperger intentionally worked with children of all different levels, Kanner placed himself at the top of the autism assessment and treatment hierarchy, guaranteeing that he would only see the most severe cases.

(Shortform note: As mentioned in earlier commentary, current estimates suggest that around 1% of the global population is autistic. For context, this number is comparable to the number of redheads in the world. Additionally, the severity of autism doesn’t just vary from person to person: An individual autistic person’s symptoms and traits can change significantly over the course of their life. They can become more or less severe over time, or they can be replaced by completely different symptoms.)

Difference #4: Cause

Finally, Silberman explains that Asperger and Kanner differed in their beliefs on what caused autism: While Asperger felt confident that it was a genetic disorder passed on through families, Kanner instead promoted the idea that it was a condition caused by insufficiently affectionate parenting in a child’s early years.

(Shortform note: Some researchers dispute the claim that Kanner blamed parents for autism or that he rejected the idea of a genetic cause. Instead, they argue that in describing the parents (especially mothers) of autistic children as cold and detached, he was suggesting that the parents’ brains worked similarly to their children’s brains. This would support the idea that autism is genetic and passed down from parent to child.)

Because Kanner’s work was so well-known while Asperger’s was virtually unheard of, the medical field came to view autism as a severely disabling, extremely rare disorder inflicted by bad parenting—a misunderstanding that lasted for decades to come.

A New Perspective on Autism: The Work of Bernard Rimland

According to Silberman, the theory that poor parenting causes autism prevailed in the medical field until the 1960s, when Navy psychologist Bernard Rimland (who had an autistic son) published a book arguing that autism wasn’t caused by childhood trauma but was instead a genetic disorder.

Rimland’s book took the blame for autism off of the parents, Silberman explains. It also took the experiences of autistic children into account in a way that had rarely been done before: Rimland theorized about what it was like to exist in a world not built for them and sympathized with the frustration that must come from meeting all the seemingly arbitrary demands of adults whose brains worked differently. However, not all of his work holds up to modern scrutiny, as we’ll see next.

(Shortform note: As Silberman asserts, parents don’t cause autism. However, experts explain that with the right training, they can help improve their children’s lives. Research suggests that training parents in how to communicate with their autistic children can help reduce symptoms like anxiety and aggression. Additionally, participating in cognitive behavioral therapy with their autistic children can improve parents’ mental and emotional well-being.)

The Interplay Between Autism and Trauma

The attribution of autism to childhood trauma—a myth Rimland helped dispel—is further complicated by the fact that autism and trauma are often hard to distinguish. For one thing, the symptoms of trauma-related conditions like PTSD often mirror some of the symptoms and traits of autism—for example, increased sensory sensitivity and difficulty regulating emotions.

Additionally, autistic people are more likely than allistic people to experience trauma, and trauma survivors are more likely to experience further trauma, making both groups especially vulnerable. Autistic people’s sensitivities can also cause them to be traumatized by events that allistic people wouldn’t find traumatizing.

All of these factors can lead to misdiagnoses of PTSD and autism (mistaking one condition for another) and missed diagnoses (correctly diagnosing one condition while overlooking a co-occurring one).

Rimland’s Problematic Theories

While much of Rimland’s work helped progress the field of autism research, he also promoted other, ultimately harmful theories, Silberman explains. For instance, Rimland agreed with Kanner’s strict definition of what constituted autism and believed it wasn’t a spectrum. He also posited that while autism was genetic, environmental factors such as diet and metabolism could exacerbate it. This began a movement known as the biomedical movement (or BioMed for short). This movement was devoted to “curing” autism through dietary changes (like gluten-free or ketogenic diets), supplements, medication, and chelation (the use of drugs that bind to toxic metals in the blood, allowing the body to then flush out the toxic metals).

Rimland also promoted the idea that vaccines caused autism. Though it’s since been debunked, this idea gained greater traction in the late 1990s, when gastroenterologist Andrew Wakefield published a paper claiming that chemicals in the MMR (measles, mumps, and rubella) vaccine had caused an autism epidemic. The paper cited a study that was later retracted due to its unreliability and inaccuracies, and Wakefield lost his medical license for spreading fraudulent information.

Furthermore, the apparent “autism epidemic” that Wakefield cited wasn’t due to an increased incidence of autism. Rather, increasing autism rates were due to expanded diagnostic criteria and a better clinical understanding of the disorder. Thus, vaccination rates had no effect on autism rates.Still, the paper led to a worldwide drop in vaccination rates, resulting in a massive resurgence of diseases that had nearly been eradicated.

Why We Cling to the Theory of Environmental Causes

Despite its thorough debunking, the idea that vaccines and other environmental factors cause—or might cause—autism persists to this day. Proponents of this idea argue that the expansion of diagnostic criteria alone isn’t enough to explain the increase in diagnosis rates. They add that, whether or not you believe in environmental causes of autism, BioMedical interventions like dietary changes can’t hurt (though some research and critics suggest otherwise).

Other researchers contend that the reason many still cling to the idea of environmental causes is because we haven’t yet identified the specific genetic cause of autism, and this uncertainty makes parents and carers of autistic people uncomfortable. It’s more reassuring to hear a decisive (though false) statement like “Vaccines cause autism” than to be told, “We haven’t yet identified the precise mechanism that causes autism.” However, as research progresses, science is getting closer to identifying a clear biological cause. A 2019 study suggests autism may be caused by a gene mutation that impairs the development of synaptic connections (the connections between brain cells) at an early age.

Applied Behavioral Analysis

Many today still believe that autism can be medically “cured” through biomedical interventions or by avoiding vaccines. In this section, we’ll explain another purported treatment of autism called applied behavior analysis (ABA): a type of therapy based on the psychological principles of behaviorism. Silberman explains how psychologist Ivar Lovaas developed this “therapy” as a means of ridding autistic children of their autistic traits so they would seem “normal.”

Lovaas’s treatment involved teaching children to perform certain behaviors to get a reward—for example, the therapist would instruct the child to give them a hug or a kiss, and they would reward the child with food when they did so. However, as his treatment proved ineffective with some children, Lovaas began implementing punishments for failing to perform the desired behavior, or for performing undesired behaviors like stimming and echolalia. These punishments included striking children, subjecting them to blasts of sound over 100 decibels, subjecting them to electric shocks, and withholding food and water.

Despite outcries from the public and the medical field about the use of ABA on autistic people, some facilities and professionals still practice it and use punishments like electric shock.

While these different approaches have had varying levels of success in treating some aspects of autism, there’s no medical “cure” for autism. And, according to Silberman, there’s no need for a cure: Modern advocates of neurodiversity argue that autism isn’t a mistake or a problem to be solved, but a valuable aspect of humanity. And while many traits of autism can be disabling, the best way to treat these is through social support, a strategy we’ll explore in the next section.

The Ethics of ABA

A major ethical issue with ABA that autistic advocates highlight is that it requires a child to let someone else touch or move their body without their consent. They argue that this teaches children that they’re not in control of their bodies—a violation of their bodily autonomy—and that they don’t have the right to say “no” to what someone else wants to do to their body. This concern becomes especially relevant when we consider that autistic people are significantly more likely to experience sexual abuse than allistic people.

Punishments continue to be standard practice in many ABA therapies. The use of electric shocks has largely been eliminated, but the Association for Behavior Analysis International (ABAI) publicly supported this punishment up until November of 2022. One treatment facility in the United States, the Judge Rotenberg Educational Center, continues to use electric shocks on people with autism and other disabilities. This is despite opposition that includes a statement from the UN Human Rights Council that classifies electroshock therapy as torture.

And while the methods used to induce behavior change have faced much backlash, many autistic advocates suggest that the overall goal of ABA is inherently unethical. They argue that trying to force an autistic person to behave like an allistic person is a type of conversion therapy, not unlike gay conversion therapy (a practice that was also based on Lovaas’s work).

The True Treatment for Autism

Silberman suggests that the only “cure” for autism is support and community: Autistic people need to be able to connect with people like them and have access to environments conducive to their needs and strengths. In this section, we’ll describe some ways autistic people have found to create their own spaces and communities throughout recent history, including fandoms, events designed for autistic people, and online communities. Then, we’ll explain Silberman’s suggestions for how society can create more inclusive environments for autistic people.

(Shortform note: As Silberman implies, an autistic person’s environment can heavily impact their functioning and well-being. This has led some people to argue that autism isn’t a disability—rather, society causes it to be disabling by failing to accommodate the unique needs it entails. This perspective is known as the social model of disability—as opposed to the medical model of disability, which argues that the impairments that come with a condition like autism are inherently disabling.)

Creating Autistic Space

Silberman explains that the advent of the sci-fi genre of literature in the mid-20th century gave many autistic people a way to connect with each other, giving rise to the first fandom. Reading is a common passion for autistic people, and Silberman suggests autistic people are drawn to the sci-fi genre because it offers membership in a group with its own jargon, rituals, and common ideas.

(Shortform note: As alluded to in earlier commentary, autistic people often use their interests to bond with others. In fact, research shows the parts of an allistic person’s brain that tend to be devoted to social processing and behaviors are often dedicated to special interests in autistic people’s brains. If you’re looking for a way to connect with an autistic person, try learning about and asking them about their interests.)

Silberman also emphasizes the importance of “autistic space”: environments that are designed for autistic people’s unique needs and interests. He describes his experience of attending “Autreat,” a yearly retreat created by autistic people for autistic people—for example, attendees were given different colored badges to indicate to others whether they wanted to interact, and people had to ask permission before taking photographs so the flashes wouldn’t trigger seizures for anyone.

At Autreat, Silberman experienced something he’d never experienced before: being an allistic person surrounded by autistic people. This gave him a new understanding of what it might be like to live in a world where the majority of people don’t think the way he does, something autistic people experience every day. He explains that places like Autreat give autistic people the opportunity to be in the majority instead of feeling abnormal or out of place.

(Shortform note: The last Autreat was held in 2013. However, other organizations, such as the Association for Autism and Neurodiversity, hold events and conferences designed (at least in part) for autistic attendees. Parents looking for a dedicated autistic space experience for their children could consider programs like Camp Akeela, which provides children with choice-based activities, a high counselor-camper ratio, and accommodations to suit their neurological needs.)

Many autistic people have also created “autistic spaces” via online communities, where they can communicate in a setting that’s conducive to their sensory needs without feeling pressure to suppress their autistic traits. These online communities have allowed more autistic people to connect with others who share their experiences and ways of processing the world.

(Shortform note: Research suggests that online platforms may be especially appealing to autistic people because they eliminate many aspects of in-person interaction that autistic people struggle with, such as eye contact and small talk. Additionally, online platforms allow people to connect based on special interests regardless of geographic proximity. This can be particularly useful for people with more niche special interests. However, some autistic people report that they prefer in-person interaction—even though it’s more difficult—because they feel less emotionally connected to people they only interact with online, and because online relationships often feel less secure because they can end suddenly and unexpectedly.)

How Society Can Better Accommodate Autistic People

Silberman explains some ways in which society should adapt to support autistic people. For example, schools and workplaces could implement “quiet spaces” where people can get a respite from sensory input. Schools could use technology to provide the mode of instruction that best suits a student’s neurological needs (for example, written instruction versus verbal instruction). They could also give students more control over their learning space by letting them use sunglasses, earplugs, and noise-canceling headphones to manage their sensory input.

(Shortform note: In addition to the methods Silberman outlines, research shows that educators can enhance learning for autistic students by incorporating their special interests into curricula. It can improve motivation, participation, engagement, and—in some cases—communication skills. Teachers can also form stronger connections with students by engaging in their special interests with them. Educators can incorporate special interests into the whole-class curriculum or in individualized tasks for the autistic students; they can also let students engage in their special interests as a reward for completing classroom activities.)

Silberman explains that some groups are already changing how they operate to not only accommodate autistic people but also make the best use of their unique abilities. For example, some employers are replacing in-person interviews with small projects that allow candidates to put their abilities on display (since traditional interviews can be very socially demanding and require people to explain their skills rather than demonstrate them).

(Shortform note: Another way that workplaces can accommodate autistic people is by allowing them to work remotely. Autistic workers report that remote work allows them to better control their environment and avoid distractions, and research shows that it lowers absenteeism and increases employment rates. Some experts also point out that many accommodations for autistic people can benefit all workers, including allistic ones. For example, providing a quiet space for reducing overstimulation can help both autistic people and allistic people manage their emotions and cut down on distractions.)