Last updated on November 26, 2023
What does it mean to be autistic? Like many diagnosed later in life, I turned to books for some answers. The autistic label was applied to me during my first year in a doctoral program. That was also the academic year I started this blog.
Among the books I read was Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker. Shortly after reading the book, I had to opportunity to attend an interview with Dr. Grinker at the Minnesota Public Radio auditorium. I spoke with him briefly, merely to thank him for his work.
Before my review of Dr. Grinker’s latest work, Nobody’s Normal: How Culture Created the Stigma of Mental Illness, I want to explain why I value his work and his unique perspective.
Most importantly, Grinker is the father of an autistic woman. As a parent, my concerns for my daughters aren’t the same I have regarding my own autism. Parenting means navigating systems such as healthcare and education that fall short of universal design.
Grinker’s wife, Joyce, is a psychiatrist. That didn’t make parenting any easier.
Beyond his lived experiences as a parent, Grinker’s grandfather was a towering figure in psychiatry. Roy R. Grinker, Sr., was born at the turn of the twentieth century and helped shape modern psychiatry as a medical and academic field. When your grandfather trained with Sigmund Freud, that’s quite the legacy. Grinker’s great-grandfather was a neurologist and, within the limits of nineteenth-century knowledge, a psychoanalyst. (The “alienists” of the time often embraced racist, sexists, and otherwise disturbing views of mental difference and mental illness.)
The introduction of Nobody’s Normal helps explain Grinker’s connections to mental health and his role in documenting mental communities. As an anthropologist, Grinker studies the field his grandfather helped found and in which his wife works. Studying the culture of people who study the human mind seems a fitting career path.
Be sure to listen to The Autistic Me Podcast with Dr. Roy Richard Grinker.
Thoughts on Nobody’s Normal
With Nobody’s Normal: How Culture Created the Stigma of Mental Illness, Roy Richard Grinker again demonstrates his ability to use compelling narratives to guide readers. Though the book is more than 380 pages, the writing moves readers along quickly. Historians and anthropologists need to master narrative writing because they tell our stories.
Three important words appear in the full title of Grinker’s work: Normal, Stigma, and Illness. Each of these words carries significant weight, shaping the discourse we have regarding Neurodiversity and other forms of cognitive difference. The dominant individuals in a culture define normal and enforce stigmatization. The concept of illness is complicated because “mental illness” is defined by smaller groups with competing interests in who controls diagnosing and treating illnesses.
Grinker explains the book’s title originated with a student’s observation that, based on class discussions, “Apparently nobody is normal.” As Grinker notes, his family believed everyone had at least periods of mental illness. We get colds. We get depressed. The mind, an organ of the body, is as fragile as our lungs or heart.
Depending on the data source, some scholars estimate 60 million people in the United States meet the criteria for “mental illness” (and I use the quotes intentionally) during any given year. That’s roughly a fifth to a quarter of Americans who must deal with some cognitive-emotional challenge. Over a lifetime, I’ve wondered if Grinker’s family is correct: we all suffer a mental illness at some point during our lives.
When does “normal” sadness become the “illness” of depression? When does a reasonable desire to be organized become a disabling compulsive disorder? The Diagnostic and Statistical Manual of Mental Disorders is our “official” arbiter of mental illness. The American Psychiatric Association, by way of several committees, crafts the lists of criteria used to label mental health patients.
Cultures stigmatize individuals for many reasons, including mental illness. A “stigma” is a brand or mark indicating someone should be shunned. For Christians, the “stigmata” refer to the marks on Jesus of Nazareth caused by his crucifixion. We can be stigmatized for a physical illness, a disability, or any difference.
The stigma, the mark of being diagnosed with a mental illness, changes as a culture changes. What was considered an illness might be reclassified as “normal” by the APA and the DSM.
Grinker explains stigma, the origins of “mental illness” and our changing understanding of normal throughout Nobody’s Normal.
Organization of Nobody’s Normal
[Note: I received an advance reading copy of Nobody’s Normal, without the pagination, sections, or indices in final form.]
I found the organization of Nobody’s Normal interesting. The three parts of the text are:
- Part One: Capitalism
- Part 2: Wars
- Part 3: Body and Mind
The chapters within “Part Two: Wars” were fascinating and worked seamlessly together. Likewise, “Part Three: Body and Mind” flows with the grace of a mid-century novel. The narrative vignettes rival the storytelling of Malcolm Gladwell and reminded me at times of Steve Silberman’s work Neurotribes: The Legacy of Autism and the Future of Neurodiversity. I enjoy taking deceptive historical tangents, especially when they start to connect later in a text.
However, I struggled with the name and some of the implications within “Part One: Capitalism.” Maybe the chapters fit better under a generic “Anglo-American Culture” or “Western Culture” umbrella. There’s more than an economic argument advanced in these chapters; the reduction of our cultures to their economic models doesn’t work well for me. Because I study the rhetoric of economics, labels such as “capitalism” or “socialism” create misunderstandings and erroneous assumptions.
More accurate, at least for me, is the notion of “Enlightenment” or “Liberalism” that assumes we are individuals first and members of a community second. That’s quite different from other philosophical and cultural traditions that prioritize community and family, subordinating the individual to the whole. It’s a minor quibble, I realize, yet I struggled with the framing throughout the early chapters.
Part 1: Capitalism
“Every Man for Himself,” the first chapter’s title asserts. It is not an endorsement by Grinker of our individualistic society and values but a reminder of how we define disability and difference.
In the first dozen pages, Grinker establishes that disability is a social construct that reflects how much a community accommodates its members. Starting with an example from his research in Namibia, Africa, Grinker suggests community sets the expectations and norms. He takes us to Martha’s Vineyard in the late 1800s to demonstrate that communities adapted to differences. And he transports us to Korea for a lesson on how mental illness is a global concept.
The Martha’s Vineyard example stuck with me because I have many Deaf friends. On the island during the nineteenth century, so many people were deaf from a genetic inheritance that a form of sign language became a de facto second language in communities. Since everyone knew sign language, Deafness wasn’t a disability. In fact, people couldn’t remember who was or was not Deaf. It was, in Grinker’s terms, an ordinary difference.
Then “experts” arrived and stopped schoolchildren from using sign language. New arrivals didn’t know the language. The past faded away, and the Deaf were again disabled.
Allow me to quote from the text a lesson I wish more colleagues in academia learned:
We give power and authority to the scientists, as if “expertise” is a real thing that a person or an institution can possess (like a diploma or a PhD after one’s name), and conveniently forget that the practice, and the spirit, of science is best understood as trial and error, best guesses and fallibility.
Experts determined speaking sign language was somehow detrimental. Experts can be, and often are, wrong.
Independence, Dependence, and Disability
Our culture embraces individualism in many ways, beyond economics. Our faiths tend to be individual, not familial. We teach that your family doesn’t dictate your future, though we don’t entirely deny family influence. From academic success to spiritual success, in the American ethos, you’re on your own.
Yet, what if you cannot be independent? What if you need supports to survive… or thrive? In the United States, “needing help” means not having enough income or financial resources to pay for a comfortable existence. As long as you earn a good living, “disability” is offset by money. (In other cultures, other forms of status and standing offset perceived disabilities.)
Grinker notes that “mental illness” is an industry with its experts, publications, research budgets, pharmacology, government programs, and so on. This doesn’t imply that the healthcare providers care more about wealth than people, but in our system, money shapes what is categorized, researched, supported, or stigmatized.
It’s easy to dismiss the Korean mental health condition hwa-byung (fire illness) because it’s a culturally encoded understanding of stress and anxiety. Grinker uses this condition as an example of our minds and bodies reflecting our cultures. Anger, hate, anxiety… unresolved issues within relationships. (The story Grinker shares is fascinating history.)
No matter your culture, when you cannot perform “normally” in a society, then you are disabled and stigmatized.
Grinker reflects on the familiar and horrifying, history of psychiatric “treatment” in Western cultures. Torture was a treatment — and many of us argue it still. Page after page, Grinker recounts the dark history of mental health treatments. It’s fascinating and disturbing.
The rise of the “scientific method” contributed to the Industrial Revolution, the rise of capitalism, and significant changes to healthcare. Grinker suggests we cannot separate all these forces.
The third chapter of Nobody’s Normal, “The Divided Body,” examines the tensions caused by rapid change. Mental health became weaponized, a way to control gender, sexuality, and even ethnicity. Sexism, homophobia, racism, classism, and other bigotries were intertwined with mental health.
Statics emerged as a discipline during the 1800s. It was soon obvious that data could be used to analyze illnesses, especially mental illnesses. In England, the 1845 Lunatics Act meant that localities needed to count their mentally ill and assess their needs. Of course, the “needs” of the mentally ill were asylum beds. Counting people wasn’t new, as the United States Census for Congressional Apportionment illustrates. What was new was categorizing, averaging, and predicting trends within a community.
As you read about the use of “insanity” to control Blacks, especially in the northern states, Grinker relies on the biased data of the times to illustrate how mental illness diagnoses were abused. States we might wish to imagine were more tolerant were actually most likely to diagnose Blacks as insane or lunatics.
In 1843, the Boston Courier reported that in the free states of Ohio, Indiana, and Illinois, the prevalence of insane [Blacks] was one in every eight-eight. The average rate across the states of Massachusetts, Maine, New Hampshire, and Vermont was one in thirty-four, and in Maine alone the rate was one in fourteen.
This was not about “capitalism” or any other economic model. This was racism, plain and simple.
In short, the proportion of free blacks with insanity was eleven times greater than it was among enslaved blacks, and there was no difference in the insanity rate between whites in free or slave states.
The powerful defined anyone they feared as inferior or even mentally ill. Of course, this wasn’t limited to “capitalist” nations over time. The Soviet Union and Communist China mastered the use of “mental illness” to remove dissident voices. Associating mental illness and cognitive deficiencies with marginalized communities continues today, around the world in nations and cultures with diverse philosophies, economic models, and political systems. My interest in the rhetoric of economics has led me to lecture on how often the Progressive Era embraced “science” that was deeply discriminatory.
It was scientists, doctors, and other highly educated “experts” and not, as if often assumed, ignorant or uneducated lay people who generated and reproduced racist ideologies. Prejudice and discrimination often start at the top. Well into the mid-twentieth century, white doctors described African American men as irritable, aggressive, relatively impervious to pain, and prone to the so-called negative symptoms of schizophrenia….
Medicine, including mental healthcare, continues to support inequalities.
Today, there are still institutions using restraints to control individuals with mental health diagnoses. There are therapies that rely on aversive techniques to change behaviors.
The Bethlem asylum of 1330 England remains a part of our culture, with references to Bedlam. We still refer to “ships of fools,” a phrase employed by Michel Foucault. Johann Reil’s torture devices seem a lot like the “sensory stimulation” I’ve heard quacks selling to desperate parents of autistics. As Grinker notes, it was Reil who gave of the term “psychiatry.”
Grinker reminds us that all editions of the DSM and their included biases are recent history. The DSM-5 is not free of the values and assumptions of its authors. It is better than the previous editions, yet imperfect.
A renaming and reframing of this first section would have improved the text and avoided what feels like a cheap and common academic move of blaming hatred and oppression on “capitalism” when humanity everywhere is flawed. This text is a Western history, and one from the “American” perspective. Still, we should avoid implying any form of exceptionalism, for better or worse.
Returning to the concept of dependence as disability, there is a uniquely capitalist conception of disability, and Grinker rightly critiques this understanding. His final paragraphs Part One’s final chapter, “The Divided Mind,” diagnose a serious shortcoming of our individualistic culture:
Most societies view emotional and physical sicknesses as a problem of the community that therefore demand a social rather than an individual therapeutic response.
Grinker concludes:
Systems of healing that do not hew to the orthodoxy of Western individualism have found ways to protect the sufferer. They deflect responsibility away from the individual and the individual’s brain, and in the best of circumstances they harness the social supports that, even the most Eurocentric doctors will confess, lessen the pain of mental illness.
We shame and stigmatize the individual who needs supports. We have to pass laws to ensure the disabled have access to basic services such as education. It is a commentary on the United States that the Americans with Disabilities Act was required at all. We view accommodations as burdens on the providers of goods and services, not as obviously moral and correct choices.
Part 2: Wars
Before World War I, the “Great War” and the “War to End all Wars,” mental illness was presumed limited to the mentally weak: women, minorities, and the physically feeble. Hysteria, after all, was named such because it was considered an affliction of women.
Grinker opens Part Two with an anecdote about his great-grandfather Julius Grinker. The renowned doctor delivered a speech on December 8, 1900, with the title “American Nervousness: Its Cause and Cure.” He blamed “indiscriminate marriages” and the “shopping habit” of women. Such sexism, outright misogyny, was common among educated, upper-class elites.
World War I shattered the comfortable assumptions about mental health.
Men returned from war forever changed. Today, “shell shock” and “battle fatigue” are known to be PTSD, traumas that linger after the lived experience: post-traumatic stress disorder. Men, brave soldiers, who experienced WWI, were hospitalized for nervous disorders including anxiety at staggering rates.
Grinker’s writing is at its best in the chapter “Finding Freud,” which draws on his family history to tell the story of psychoanalysis and the rise of psychiatry. The anti-Semitic attitudes within academic and medical institutions led Roy Reuben Grinker to become Roy Richard Grinker. As we learn about Julius and Roy, there’s little sentimentality from Grinker. Yet, we appreciate the challenges faced by Jewish doctors facing such nonsense as a “one-Jew rule” for hiring at universities.
Sigmund Freud comes across as a narcissistic jerk, a conclusion I’ve drawn from biographies of the famous psychoanalyst. It’s easy to understand why someone experiencing Freud first-hand might question the value of psychoanalysis.
Freud isn’t the only domineering figure in the chapter. Julius Grinker casts a shadow over Roy. It’s clear that Grinker admires his grandfather and respects his great-grandfather, but he doesn’t spare Julius.
I remember that my grandfather did not like to talk about Julius, and when he did, he had only negative things to say.
Yet, on the desk of Roy Grinker was a photo of the imposing Dr. Julius, the family authoritarian. The photo seems to have been a source of motivation, driving Roy Grinker to do more than his father had expected.
Though already established in his field, World War II offered Roy Grinker and his colleague John P. Spiegel a unique opportunity to create a guide to military psychiatry. Their work for the United States Air Force, War Neuroses in North Africa (1943), revolutionized descriptive guides to mental health diagnoses.
On the NBC radio series The Doctor Fights, the actor Vincent Price portrayed my grandfather as a hero of the war effort who helped “broken” pilots get back in their planes.
But that was far from the reality. While Grinker and Spiegel were able to return the majority of their patients to active duty, almost all of these soldiers were assigned desk jobs. They authorized the return to combat for only about two percent of their patients.
Regrettably, though war changed perspectives on some aspects of mental health, homosexuality remained a stigmatized “disorder” in psychiatry. Grinker spends a fair amount of time on the ostracized and pathologized homosexuals “uncovered” by the military. To be discovered was to receive a dishonorable discharge, ruining one’s opportunities for employment and a “normal” life in 1950s America.
It is with some sadness that Grinker explains his grandfather’s friend and college, John Spiegel, was unable to reveal his sexuality until 1981, at the age of 70. He had hidden his sexuality from his children and grandchildren, living a lie for 50 years.
Spiegel had played an important role in removing homosexuality from the DSM as a mental disorder in 1973. That same year, Spiegel was elected president of the American Psychiatric Association.
War led to revolutionary approaches to diagnostics, eventually giving us the DSM-I and its future editions (and revisions). War forced us to admit mental illness affects all people, including the bravest soldiers. As Grinker notes in the chapter “War is Kind,” nations will try to heal an injured soldier… to a point.
PTSD entered the lexicon after our various wars and military actions. We came to appreciate the need for screening individuals for mental health just as we screen for other health conditions.
Yet, the war also allowed the persecution of some people. Homosexuals were targeted for abuse and stigma, despite advances in other areas of psychiatry.
Part 3: Body and Mind
Part Three of Nobody’s Normal features passages I have read several times. These chapters remind us that for all our progress, we have much further to go with mental health care and support.
During the late nineteenth and early twentieth centuries, people with mental and physical disabilities in the United States were largely hidden from public view, unless they were displayed as curiosities of “nature’s mistakes” in circuses. The so-called ugly laws helped enforce their invisibility.
Grinker recounts the story of Rosemary Kennedy, sister of John F. Kennedy. Struggling with a learning disability and anxiety, Rosemary was lobotomized. The Kennedy family erased Rosemary as if she simply vanished without a trace. It is because of Rosemary that President Kennedy signed the 1963 Community Mental Health Act, though it was an imperfect law with unintended consequences.
And Grinker recounts the horrific story of the self-serving choice made by psychologist Erik Erikson:
In 1944… Erik and Joan Erikson had their fourth child, Neil. Joan was forty-one, and Erik was forty-two. Erik, a German-American professor at the University of California, Berkeley, was poised to become one of the most illustrious psychologists and psychoanalysts of the twentieth century…. A champion of honesty and transparency, he told parents of his child patients that they should never keep secrets. But Erikson was a different person in his office than in his home.
Neil was born with Down syndrome, though at that time the hospital staff used the current terminology and told the Eriksons that their son was a “Mongolian Idiot.’ At a loss for what to do, Erik telephoned two friends, the anthropologist Margaret Mead and the psychoanalyst Joseph Wheelwright. Both recommended he and Joan send Neil to an institution immediately, and that to fail to do so would hurt Erik’s career and public image. […]
On Mead’s advice, Erik didn’t even let Joan see the baby, and made the decision to institutionalize Neil without ever consulting her. Mead was concerned that Joan might become attached to Neil and prevent Erik from sending him away.
The Eriksons even lied to their children, claiming their young sibling died at birth.
The notion that hiding a child away or subjecting a young adult to a lobotomy was preferable to caring for the individual angers me, in part because that is still the approach of many parents. Down syndrome has been nearly tested and aborted out of existence. Autistics are subjected to abuse based on behaviorist nonsense.
Grinker’s grandfather, Roy Grinker, rightly opposed lobotomies because nobody really knew what the procedures did. He considered lobotomies a form of mutilation, and the historical record suggests he was correct. Any little progress is a step forward, I suppose.
Every chapter in Part Three of Nobody’s Normal offers a compelling reminder that the body and mind are not separate. The mind is part of the body: our emotions affect our bodies, and the states of our bodies generate emotional responses.
If the mind wasn’t physical, medications wouldn’t change moods and treat mental health conditions. Anyone who has been treated with psychopharmacology knows how life-changing medications can be. We also know that stress and emotional traumas change our heart rates, blood pressure, breathing, and other physical states.
We travel around the globe with Grinker in these chapters, reminding us that how bodies react to situations is cultural. How an American reacts to stress isn’t the same as how someone elsewhere in the world might react.
Grinker returns to war and its effects on people, particularly children, in the chapter “Bridging Body and Mind in Nepal.” It’s difficult to imagine the experiences of child soldiers. Unlike in the United States, many of the trauma patients seen by Dr. Brandon Kohrt were accompanied by family members. However, Kohrt soon realized that both Nepal and the United States, incredibly different nations, stigmatized forms of mental illness, though in different ways.
Communities always have outsiders, the stigmatized “other” members. I wonder what this tells us about humanity.
Autism, the DSM, and Spectrums
Nobody’s Normal explores our understanding of autism throughout the text. Readers might presume that Grinker’s personal connection explains the prominent role of autism as an exemplar of mental health diagnoses. However, autism is a great example of the complexities of the Diagnostic and Statistical Manual of Mental Disorders. What happened when some forms of autism were genetically identified? The APA removed those from the DSM. You won’t find Asperger’s Syndrome in the DSM, either, as “autism” is now a spectrum of apparently related traits.
As Grinker notes, the DSM-I and DSMI-II presented mental illnesses as reactions to experiences. These were the texts created by behaviorism: we are created by our parents, families, and external events. The DSM-III (1980-1994) shifted towards a medical model of mental illness. Now, the mind was ill medically, suggesting a physical state of abnormality. The DSM-IV (1994-2013) further revised the medical-ish model while maintaining that once a medical cause was found for a mental illness, the illness exited the DSM. The current edition, the DSM-5 (2013-), is a curious effort to embrace spectrums and quadrants, placing mental illnesses on created scales of “severity” and “disability” to suggest treatments.
The DSM is the foundational text of the mental health industry. Diagnoses, and therefore “treatable” and insurance billable conditions, were added with each edition.
The 1968 DSM-II had 193 diagnostic categories; the DSM-III had 292; in 1994, the DSM-IV had 383; and since 2013, the DSM-5 has 541. […]
Illness categories became increasingly important because medicines had been developed for specific diagnoses.
The “medical” and “pharmacological” approach to psychiatry in some ways places the stigmatization back on the person with a mental health difference. If you’re sick, it’s your responsibility to seek care and treatment. When a pill can make you better, what excuse is there for not resolving the issue?
The industrialization of mental health led to the rise of many diagnoses that were once rare, including autism.
For example, autism emerged as a common diagnosis in tandem with the growth of child psychiatry, psychiatric epidemiology, psychopharmacology, and the special education industry. Autism then looked like a new and more prevalent condition. But just because mere people were diagnosed and enrolled in special education programs didn’t mean that autism had increased in incidence…. According to researchers Stephen Hinshaw and Richard Scheffler, the same process happened with ADHD. “The message,” they say, “is that once a diagnostic category generates medical and educational services, its use tends to soar.”
Grinker and his wife Joyce are parents to an autistic young woman. As Grinker notes, their daughter would be what we call autistic with or without the diagnostic label. Autism is a set of observable traits without a clear genetic marker. Autistics, including me, are labeled by what is observed about us, our behaviors, and responses to stimuli.
As autism diagnoses increased, other diagnoses decreased. People were “recategorized” as the DSM was revised. Many of us diagnosed autistic later in life had other diagnostic labels applied to us earlier in life.
What would happen if science located “THE” autism genetic markers?
Down syndrome has virtually disappeared among newborns in Iceland because nearly 100 percent of unborn babies receive prenatal genetic testing and any child found with trisomy is aborted.
By comparison to Down syndrome’s known genetics, with autism
only 3 percent to 5 percent of autistic children in the samples of large research studies share the most common genetic factors for autism. This means that we shouldn’t think of autism as a genetic mistake. There are just so many ways to produce the phenotype — so many pathways, combinations of genes and regulators of genes — that reducing autism to a malfunction in our genes makes no sense scientifically.
Grinker references Steve Silberman’s work Neurotribes, in which Silberman explains that a sampling of 100 autistics might reveal 100 different genetic causes. Autistics defy our desire for a simple, clear, medical origin for the “disorder” we call autism.
Recommending Nobody’s Normal
Roy Richard Grinker’s excellent writing makes Nobody’s Normal a quick read. He covers a lot of material in the book, yet the text is never difficult or too dense.
Grinker is my favorite author among those addressing mental health, and we have a lot of books on mental health in our home library. I have been asked if any non-autistic writer can accurately discuss autism. Yes. Professor Grinker claims no expertise on autism, only on the culture of mental health. He doesn’t condescend to autistics — or any other readers.
Maybe there will be autistic scholars who build on the work of Grinker and add important insights. I certainly hope so.
The book that helped me accept my autism diagnosis was Unstrange Minds: Remapping the World of Autism. I still struggle with labels, and with Nobody’s Normal: How Culture Created the Stigma of Mental Illness Prof. Grinker once again provided me with tools to interpret my experiences.
Again, I encourage you to listen to The Autistic Me Podcast with Dr. Roy Richard Grinker.