To Diagnose or Not to Diagnose, That is the Question
The double-edged sword of psychological labels
For things cannot survive as categories but only as individual creatures living uniquely where they live.
~Wendell Berry, “Life is a Miracle”
For 12-year-old Cassie, it started with little things - like placing all the items on her desk exactly the same distance from the edge because she “felt right” when they were there but felt “really bad” when they weren’t. Soon, the list of things she had to do in a certain way grew - closing the door 10 times every time she went in or out of a room, perfectly arranging her stuffed animals on her bed, repeating specific words and numbers 3 times backwards and forwards when she felt even a little nervous. All of this took time, and as a result, she needed an hour to get ready for school or bed, and was becoming increasingly distracted in class.
But how could she stop? The only way she felt right or good anymore was to perform every ritual to the letter. So she kept going - even when she lost sleep and her grades started slipping. “What‘s wrong with me? Other people aren’t like this. I must be really messed up.”
Things at home were going downhill, too. After an exhausting day at school, all she wanted to do was lock herself in her room and hide. Her parents knew something was wrong, and they pressed her to let them in on what was happening. But she hid her distress and her rituals because she feared that, if she told them, they wouldn’t understand or worse, they would be ashamed of her. As the weeks went by, however, her feelings of depression deepened and she started having thoughts of hurting herself. That’s when she decided she had to tell her parents.
Cassie was one of the lucky ones and was connected with a therapist soon after. She was quickly given a diagnosis of OCD. Six months on, she was doing well, benefitting from cognitive behavioral therapy designed to short-circuit the vicious cycle of obsessions and compulsions and manage her depression.
I ask Cassie, “What’s it like to get a diagnosis of OCD?”
“It was a huge relief. I felt a million times better because before that, I thought I was all alone. I thought there was something so wrong with me that I couldn’t tell anyone. But when they told me it was OCD, and that there were other people - millions of other people - who also had what I had, I felt like I wasn’t a freak any more.”
“What’s therapy been like?” I ask.
“I don’t know if it’s really helped me. I like my therapist but I’m sick of therapy! But maybe it has helped because there are so many things I don’t feel I have to do any more - like how I used to have to make everything perfect on my bed - my blankets, pillows, stuffies - before I could go to sleep. Or how I was always late to school because I had to check if everything was in its right place, like, 10 times, before I could leave the house. Now, I feel like I know what to do when I start to feel overwhelmed. Even when I have a panic attack, I can calm myself, ride it out. I can get back to what I want to do.”
Yet, still, she insists, “I’ll never be normal. And you can’t tell people they don’t have a disorder, that they’re not disordered. People know when they’re not normal.”
Ay, there’s the rub: To diagnose or not to diagnose?
What are the costs and benefits of a medicalized psychology that treats mental illness like physical illness, categorizing anxiety or depression like we would a fractured foot or contagious disease?
I see an example like Cassie, and it’s clear to me - the label of OCD helped because it convinced her that she wasn’t alone and she had reason to hope. It also led her to a very specific therapy designed and tested to be effective with OCD. This is a success story.
Yet, in her beliefs about being “not normal” I see a danger signal, too. I wonder whether this view of herself could compromise resilience. I worry that it could erode her sense of autonomy, making her believe that setbacks are a sign of weakness or fragility, rather than what they almost always are - the human struggles that we need to go through in order to grow stronger.
I learn from Cassie, who is an aficionado of the shameful past of Psychology, that just 60 or 70 years ago someone diagnosed with OCD might have been subjected to one of the most gruesome medical procedures in the history of mental healthcare: the lobotomy.
That may all be in the past, but lobotomy is just as surely the legacy of medicalized mental healthcare as diagnoses are today. So we ignore this double edged sword to our peril. Another diagnosis, Autism Spectrum Disorder, shows us just how much labels can cut both ways.
A Rose By Any Other Name?: The Case of Autism Spectrum Disorder
Takiwātanga: In their own time and space. ~Māori word for autism
The past couple decades have seen an explosion of interest in autism spectrum disorder (ASD). Some of that interest has, unfortunately, bred ignorance. When Robert F. Kennedy Jr. became the U.S. Secretary of Health and Human Services, he grossly mischaracterized the majority of people with ASD when he said, "They'll never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date. Many of them will never use a toilet unassisted."
Why paint all people with ASD as completely debilitated and dysfunctional? RFK Jr. believes the debunked idea that vaccines cause autism, so he wants the condition to seem as scary as possible. Yet, this debunked idea has gained momentum because of a real trend: For 30 years, rates of ASD have been steadily rising - from 1 in 500 in 1975 to around 1 in 36 today.
The Centers for Disease Control and Prevention, unlike RFK Jr., attribute these increases primarily to greater mental health awareness and more plentiful and careful evaluation. What this means practically is that we are probably detecting more real, but previously missed, cases of ASD. But we are also probably detecting more edge cases that might or might not be “real ASD.”
What’s “real ASD?” We can definitely say that profound autism, which more closely matches RFK Jr.’s description, is undeniably real. But profound autism describes only a minority of autistic individuals. Non-profound autism, accounting for the majority of cases, is not so cut-and-dry: It’s characterized by higher IQ and greater ability to function independently in the world, along with possible ‘autistic’ characteristics, like challenges with social communication and interaction, and restricted and repetitive behaviors or interests.
A large-scale population-based survey (Hughes et al., 2023) showed that there have been far fewer increases in the incidence of profound autism, compared to an over-threefold increase in non-profound autism.
That means that the less clear-cut end of the ASD spectrum - non-profound autism - is driving the rising rates. It’s likely, then, that some people diagnosed with ASD do not actually ‘have it.’
Whatever the truth might be (we can’t know for sure because there is no litmus test for ASD), it’s clear that more people are embracing the ASD diagnosis. There is good reason to do so. Like Cassie’s diagnosis of OCD, having a diagnosis of ASD can help a person make sense of their differences and distress. The ASD label can explain why a person might feel painfully socially awkward or emotionally out-of-step. It can also help a person understand their unique strengths and gifts. Indeed, with the growth of neurodiversity movements, a diagnosis can represent a tribe of belonging, or increase the likelihood of simple compassion from society at large.
But a box like a diagnosis can also become a cage. One way is through prevalence inflation - or over-identification with mental illness. This is the idea that more mental health awareness can lead us to over-interpret emotional distress or struggle as signs of a mental illness, which in turn drives us to act and think in ways that become a self-fulfilling prophecy.
Another way for a diagnosis to become a cage is to medicalize all psychological struggles into a disease you either have or you don’t. Like a definitional vortex, it sucks in any sign of emotional suffering and labels it a pathology. But sometimes suffering is just the human condition, the messy uncertainty of being alive, and a necessary condition for positive change and progress.
Are there other options?
There are when we view mental health struggles less as diseases and more as signposts that point us towards what’s not working in our life so that we can figure out how to live better.
In a study of depression, for example, Hans Schroder and colleagues taught participants to view depression either as a medical issue or as a signal that something is out of balance in their life. Those who learned the signal versus medical view felt less ashamed, more hopeful about getting better, and more likely to believe their depression was something they could change.
This study does not suggest that “solving” depression is as easy as changing your mind about it. Depression, like ASD, is complex and varies greatly across individuals. But it does suggest a key factor in whether a diagnosis helps or harms: does it increase hope and personal agency, or does it block them?
Charles Lenchner is a respected political organizer and writer. He’s also autistic, a diagnosis he embraced in his 50’s. He writes:
When I was two years old, a doctor told my parents that I might never speak or communicate “normally.” They didn’t use the word autism, but that’s what was meant. It was almost as if the doctor wanted to steer clear from the stigma of that word. My family was told to prepare for the worst, meaning future institutionalization. His more actionable advice was to emphasize stability, habits, and routines. For my well being – and the family.
Later in life, my mother told me with pride that she decided to ignore what the doctor said and just do her best to treat me like any other child. And it seemed to work: by age five you couldn’t shut me up – unless it was with a book. I still remember reading her Time Magazine at age six, and the World Book Encyclopedia at age 10 – from A-Z. Nowadays we call that hyperlexia, a fairly common aspect of autism.
What this meant is that for my first 50 years I didn’t know that I was autistic. …Over the last few years I finally connected the dots and realized that a) I am definitely autistic, b) that I was diagnosed at an early age, and c) that by ignoring this aspect a lot of harm was caused.
…My mother thought that ignoring this basic component of who I am while demanding that I conform to allistic* standards was good parenting. She was very, very wrong. So many of us suffered in silence and incomprehension for decades; only in the last few years has the phrase 'late diagnosed autistic entered common parlance. We were robbed of something valuable and our embrace of the label is meaningful and healing. *(“Allistic” is the term of art used to describe people who suffer from a lack of autistic qualities.)
He goes on to conclude:
We defy simple categorization. The vast majority of us aren’t intellectually deficient. We have all the emotions and empathize with others. We see allistic social rules and cues, body language and facial expressions, and those linguistic tics and mannerisms that enforce social pecking orders. But other things speak to us more loudly. We’re intensely curious, so we ask indelicate questions. We want to get to the heart of the matter, so we don’t pad our words with softeners. We want the world to make sense, and often go out of our way to make it so, even when those around us don’t notice, care, or do anything about it.
April is Autism Awareness month. It’s nice that we get a special month and that it opens the door to people like me who are fighting for acceptance. But what we want is to not be that special. We want to be seen as just another way of being human, as normal and valid and as all the others.
A name doesn’t always matter - like when you’re deciding whether a flower smells good or when you fall in love. What you call a mental affliction, on the other hand, matters very much when it determines whether or not you believe you are valuable and can do things in the world.
Diagnosing psychological distress into categories is the sine qua non of medicalized Psychology. We tell ourselves: The way we approach cancer - “you have it or you don’t” - is the same way we should approach OCD, depression, anxiety, addiction, psychosis, or any other mental affiliation.
But diagnosing mental illness can both help and harm. It harms us if it creates a lens of dysfunction, where any ‘negative’ experience or behavior signifies an abnormal or deficient person. But I believe it can also help when we remember that diagnoses are not destiny. We can break their hold on us and use them as tools for understanding, for seeing our strengths, and for envisioning all the hopeful possibilities ahead.
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The danger of being defined by an illness is that it can become your identity; the blessing is that it can also name your pain.
~Kay Redfield Jamison