Quick piece of advice: don’t read a book debunking the Diagnostic and Statistical Manual of Mental Disorders (DSM) a month after you’ve been diagnosed with autism. It’s like researching systemic religious abuse right after your baptism.
The book in question is Sarah Fay’s Pathological: The True Story of Six Misdiagnoses. Fay was diagnosed with anorexia as an adolescent, and then given five other labels over next few decades, including ADHD, depression, and OCD.
And it’s not that Fay thinks there was nothing going on that merited the concern of her parents and experts. She agrees she deals with mental illness, and that psychiatric medications do help people like her.
Fay’s assertion is that the labels given to her particular flavor of mental illness don’t have any basis in reality. Not just for her—for anyone.
The DSM: Making Up Reality Since 1952
Pathological examines the history of the DSM, one of the most powerful books in our society. Currently, the DSM makes mental conditions real.
All the words we use for what’s going on in our brains, like “autism” or “depression” or “bipolar” or “personality disorder” are labels created for and upheld by the DSM. Among other powers, DSM diagnoses make it possible to bill insurance. If there’s not a DSM label, you can’t get coverage. That is a ginormous deal.
The problem is that the DSM’s reality is largely fictitious. Unlike, say, a diagnosis of diabetes or COVID-19 infection, there is no reliable physical way to verify DSM diagnoses. It is also unlikely that if you visit several psychiatrists for help, they will give you the same label.
DSM diagnoses are theories based more on a committee’s whims or guesswork than rigorous research or verifiable physical characteristics.
Fay also points out that much of what we think we know about mental illness is untrue, or, at least, very, very unproven. For instance, in my own work, I’ve mentioned that depression or anxiety is caused by chemical imbalance…but there’s no proof of this, despite decades of research. Genetic causes for disorders like schizophrenia (and, dare I say it, autism)—which I’ve seen cited everywhere in reputable media, are also unproven. Very few forms of cognitive difference have physical symptoms like Alzheimer’s.
However, psychiatrists, psychologists, therapists, media, doctors, insurers and government entities act as though DSM labels are based on solid evidence. This is insane.
That’s why Fay says the labels applied to her are “misdiagnoses.” In her view, all DSM diagnoses are misdiagnoses. They have more in common with, say, an invented personality test type like “Enneagram 9” or “INFP” than they do with scientifically verifiable diseases like “measles” or “diabetes.”
I’d Somehow Ignored How Many Clinicians Hate the DSM
Turns out Fay isn’t the first person to tell me that the labels in the DSM are problematic. Bessel van der Kolk says this in his landmark book on trauma, The Body Keeps the Score: “…the DSM largely lacks what in the world of science is known as “reliability”—the ability to produce consistent, replicable results. In other words, it lacks scientific validity…”
Here’s an even more scathing description of the DSM by Bruce Perry, a notable psychiatrist and trauma researcher: “[The DSM] is kind of like a computer manual written by a committee with no knowledge of the machine’s actual hardware or software, a manual that attempts to determine the cause of and cure for the computer’s problems by asking you to consider the sounds it makes.”
Apparently, I hadn’t really heard van der Kolk or Perry, because Fay’s book knocked me sideways. This diagnosis I’d just received—the one that changed everything—did it even exist?
If Autism Isn’t Real, Then Why Does it Feel Real?
Here’s why an autism diagnosis was a game-changer for me. Before my diagnosis, I had done a LOT of work to accommodate my neurodivergence, but my workarounds felt weird. It was as if I’d discovered that always wearing a red hat, speaking in limericks and jumping on one leg help me sleep at night. It’s helpful information. But it is a HUGE RELIEF to understand why such bizarre habits are necessary.
I had just started to really internalize that relief when Fay came along and upset the entire apple cart.
The questions Pathological raised in me got very weird. If “autism,” like all mental health diagnoses, wasn’t scientifically valid, why did I feel so relieved to get a diagnosis? What did it mean to be autistic if “autistic” didn’t have any objective meaning?
What was going on in my brain, and how did one describe it without words from the DSM? What did it mean for diagnostic words that feel terribly real to have no basis in fact? Were the words useful? Red herrings? Lies? Or something more complex?
What was real, anyway? And did the word “autism” help me find it?
Surprise! The Gold Standard of Diagnosis Isn’t So Golden
I might have gotten completely lost in that tangle of existential inquiry were it not for another book I’d recently read: The Invisible Kingdom: Reimagining Chronic Illness. Meghan O’Roarke spent ten years struggling to get a diagnosis for her brain fog, fatigue, and pain. It turned out she had several complex things happening: undiagnosed Lyme disease, POTS, and autoimmune conditions.
One of the diagnoses is easily verifiable with a physical exam. But the others? Her symptoms produced no physically verifiable evidence (hint: just like most diagnoses in the DSM). It took doctors with a lot of training, curiosity and patience to play detective and finally name and treat what ailed her.
In other words, O’Roarke’s book documents the limits of medical diagnoses—the judgements held up as a gold standard by Fay, Perry, and van der Kolk. It turns out that even medical diagnoses aren’t as foolproof as we think.
Some medical diagnoses are pretty straightforward, and so is the treatment: “Find the microbe, and kill it.” For illnesses like the measles, polio, or gangrene, this approach works brilliantly. But if there is no microbe, (like with an auto-immune condition) or the microbe is hidden (like with chronic Lyme disease), the approach does not work at all.
The problem is that many doctors can’t or won’t acknowledge those limits. As a result, “Doctors…question whether illnesses they [can’t] readily measure on tests [are] real.”
What O’Roarke and others with mysterious chronic conditions discover is that if their disease is not easily verified, most doctors will treat them as if they’re neurotic hypochondriacs. These tremendously ill people will also struggle to get help like disability payments or time off of work.
Imagine suffering through the disintegration of your health and mental acuity. You can’t work or get out of bed. Now imagine having your boss, doctors, insurers and government employees tell you your symptoms are all in your head. It’s a nightmare.
The Enormous Blind Spot in Medicine and Psychiatry
O’Roarke writes, “I had felt invisible in my illness, I realized, because American culture—and American medicine within it—largely strives to downplay the fact that we still know so little about illness.”
We know so little about illness—both medical and psychological. We know so little about neurodiversity. But our medical and psychiatric systems assume that we do know. That we can all be confident that our doctors and psychiatrists are experts about what we’re feeling and experiencing. That we can trust them on their own to know what to do next, and that our system is set up to do help them do that.
I’m not saying this is never true. But with psychological difference and complex illness, it is far less true than we’d like it to be. That hubris hurts and abuses people. It is not okay.
What Does it Mean to Be Real?
During the pandemic, I saw yard signs pop up everywhere. “In this house we believe: black lives matter…no human is illegal, science is real…”
I agreed with the signs. But increasingly the statement “science is real” gives me pause.
In the context of COVID, where misinformation about both the disease and the vaccine caused a lot of death and suffering, I understand what the sign-writer and all those who buy it are affirming. It’s this: scientific research is an important and trustworthy source of knowledge that we should take seriously. Yes and amen.
Still: What do we mean by real?
By “real” do we mean “the only reality?” Or “an option among other important options?” Is science a particularly useful tool to understand our world? Or do we think it’s the only tool available?
What O’Roarke and Fay point out is that science is an invaluable tool but it has its limits. They’re also pointing out the scientific establishment is bad at acknowledging those limits. That lack of humility makes it nearly impossible for scientists and doctors to see past their blind spots.
Science is real but it is also, as Indigenous scientist Robin Kimmerer points out in her book Braiding Sweetgrass, not the only trustworthy way of knowing things. Kimmerer’s book is a testament of how Indigenous ways of knowing provides insight that can complement and inspire revolutionary scientific inquiry.
But for that to happen, scientists need to collaborate with people outside of their way of knowing. As Kimmerer, Fay and O’Roarke point out, this is not the norm for experts.
Look, it’s tough for caregivers when patients spout misinformation in their appointments. Hypochondria is also a real thing. I get why doctors can learn to be guarded. Still, the medical system has not been innocent in this power dynamic. As both Fay’s and O’Roarke’s books show us, experts fall for misinformation, too, and they generally have more power than patients in our healthcare system.
In the end, science is really important, but it is also not the whole picture. Without partners to ask hard questions, and bring knowledge from outside of scientific inquiry, scientists and doctors will be rigid, arrogant, and woefully misinformed.
The Testimonial Injustice Built Into Scientific Culture
Lately I’ve been obsessed with the idea of “testimonial injustice,” a term coined by philosopher Miranda Frick. It’s the idea that in our unequal society, some people are more readily believed than others. In a hospital, or in liberal circles, doctors and other experts are more readily believed than lay people. Sometimes they have earned this trust…but sometimes they have not.
Doctors, therapists, researchers and our health care system can begin to earn trust by viewing the people they’re treating as partners, not just patients. They should honor and take seriously the hard-won insight each of those patients has on their bodies and minds. Doctors can acknowledge their own expertise about current medical or psychological research. And they can also acknowledge the limits of that research, and trust each individual patient knows their body and mind far more particularly than any outside expert ever can. They can become more comfortable saying, “I don’t know.”
In other words, in a discipline that prizes proof, scientists need to get more comfortable with the idea that not everything is provable. In a discipline that elevates objectivity, scientists need to lean on the very-much-not objective knowledge of their patients. In a discipline that trumpets certainty, scientists need to learn into mystery.
This is a tough sell.
So I’ve decided to be more guarded in our medical system. I’m not telling my primary care physician about my autism diagnosis. I am going to stop seeing clinicians that don’t treat me as a full partner in my own wellness. I’m asking much harder questions of therapists that I see. The systemic change that we need for our medical and psychiatric systems to actually help people like me is going to be a long time coming.
I am lucky that I can afford to be so choosy.
I’m Okay Knowing Autism Is a Theory
In the meantime, I’m landing here: I am autistic, and “autism” is a theory, not a reality. It has real but limited utility for people like me.
Autism is a useful label when it helps me see myself more clearly. It is a helpful mental framework when it makes me feel less alone, when it gives me practical strategies to cope with hardship, and helps me connect to other people who have similar experiences.
Autism is not a helpful label when it convinces me or other people that I can be summed up in a single word. When it is used to overlook my particularity, bypass curiosity, or to stigmatize me. It is unhelpful when it stops me or others from trusting my experience.
Autism is a theory that is trying to capture something very real about the human condition. That theory can give us some shockingly helpful insights.
But it’s just a theory. It can’t touch the full mystery of us.
Want to understand the way testimonial injustice affects creativity? My new book unpacks the toxic power dynamics that makes us all think we’re not “really” creative. Learn more here.
Photo by Tom Sodoge on Unsplash