Around the time of the pandemic, I began to notice something happening in my social circle. A close friend, then in her early 50s,
got a diagnosis of attention deficit hyperactivity disorder. She described it as a profound relief, releasing her from years of self-blame – about missed deadlines and lost receipts, but also things that were deeper and more complicated, like her sensitivity to injustice.

Something similar happened to a co-worker, and a cousin in his 30s, and an increasing number of people I met covering mental health. It wasn’t always ADHD. For some, the revelation was a diagnosis of autism spectrum disorder: after years of inarticulate unease in social situations, they felt freed by the framework of neurodivergence, and embraced by the community that came along with it.

Since then I’ve heard accounts from people who received midlife diagnoses of binge eating disorder, post-traumatic stress disorder, anxiety. Nearly all of them said the diagnosis provided relief. Sometimes it led to an effective treatment. But sometimes, simply identifying the problem – putting a name to it – seemed to help.

Lately, it seems as if we never stop talking about the rising rates of chronic diseases, among them autism, ADHD, depression, anxiety and PTSD. US Health Secretary Robert F. Kennedy jnr has pointed to these trends as evidence that Americans are “the sickest people in the world,” and has set about upending whole swathes of our public health system in search of causes, like vaccines or environmental toxins.

But much of what we’re seeing is a change in diagnostic practices, as we apply medical labels to ever milder versions of disease. There are many reasons for this: the shame that once accompanied many disorders has lifted. Screening for mental health problems is now common in schools. Social media gives us the tools to diagnose ourselves. And clinicians, in a time of mental health crisis, see an opportunity to treat illnesses early.

A few years ago, critics began to say that this trend had overshot and was beginning to do real harm. Some say that enlargement of the tent has come at a cost to the most severely ill people, who have lost the attention of the medical establishment.

Others say it’s not helping people with milder illnesses, either, especially if they are young. Diagnosis, they say, can set in motion a self-fulfilling prophecy. By reporting mild or transient symptoms as disorders, we may create an “expectation of illness,” as Irish neurologist Suzanne O’Sullivan puts it, where “there is little or no disease”.

Researchers, digging into the downstream effects of diagnoses, are beginning to see this effect play out over the long term. Diagnoses do lock you in. They suggest biological inevitability, not a rough patch.

Explain this, then: why do they also seem to help?

Naming the imp

Alan Levinovitz, a professor of philosophy and religion at James Madison University, watched from the front of a classroom while diagnosis rates rose. Disability requests, mostly for ADHD and anxiety, were taking up more and more of his time; it was increasingly difficult to find enough space for all the students with accommodations to take tests.

But when, out of curiosity, Levinovitz began to read first-person patient accounts of diagnosis on social media, they weren’t about accommodations at all. Instead, they described another, more mysterious kind of benefit, “which was the existentially transformative nature of the diagnosis itself”.

He ran this idea by his friend Awais Aftab, a psychiatrist and the author of a popular mental health newsletter on Substack. He had barely finished explaining when Aftab responded: yes, of course he had seen this. Clinicians see it all the time. Certain patients, he said, upon receiving a diagnosis, experience a rush of “strong, tremendous relief”.

While diagnosis can lead to concrete benefits like treatment and accommodations, its psychological benefit “seems to go beyond” either of these, said Aftab, a clinical associate professor of psychiatry at Case Western Reserve University. It resembled the placebo effect – an improvement, generally attributed to positive expectation, that occurs after receiving an inert treatment, and which doctors have employed for centuries.

“To us, this is a version of the placebo effect that has gone, essentially, unnoticed,” Levinovitz said. “Here is this thing that is cross-cultural and trans-historical – the power of an official name to gain control over pathology of some kind – and it is almost entirely unstudied.”

Other researchers spotted this as well. When Cliodhna O’Connor’s research team at University College Dublin analysed 1848 accounts from adults who had received autism diagnoses, they found that the adults “overwhelmingly” reported that the benefits of diagnosis outweighed the costs. A word that came up frequently was “revelation”. Often, their only regret was that they had not been diagnosed earlier, sparing them years of feeling “wrong” or “broken”.

What the phenomenon needed was a name. The paper that Levinovitz and Aftab published in August in BJPsych Bulletin called it the “Rumpelstiltskin effect,” after the imp in the Brothers Grimm fairy tale. In the story, a desperate woman falls under the power of a malicious spirit, who demands that she surrender her firstborn child to him.

The imp offers her one way out: if she can guess his name, she will be free. So she guesses every name she can think of, until she lands on the right one, and the imp slinks away, stripped of his power. The authors suggest that something similar occurs at the moment of diagnosis, relieving both ambiguity and self-blame.

“The therapeutic effect of feeling like you have an explanation for something, an official explanation, it’s really remarkable,” Levinovitz said. “People talk about how we are narrative creatures, and we tell stories to make sense of ourselves. This is a special kind of story, a diagnosis.”

The Keyser Soze moment

Anecdotal support for this benefit is everywhere. When I asked people to tell me about their diagnoses, they used phrases like “Keyser Soze moment,” “eureka moment” and “massive tidal wave of recognition”. Karen Lean, 48, an IT specialist who was diagnosed with autism in her 30s, recalled “feeling validated, relieved, recognised, perhaps even vindicated”.

A few years earlier, adrift after dropping out of graduate school, she had raised the possibility that she was autistic with a psychiatrist who had been treating her for anxiety and depression. The psychiatrist, she said, pooh-poohed the idea, telling her, “You just want a reason not to change.” But in fact, she said, the autism diagnosis changed so many things. It provided, as she put it, an “explanatory model for why I was struggling”.

She started to avoid the things that threw her off, like noisy, crowded places. She slept with a weighted blanket and got occupational therapy. Most importantly, she plunged into a local neurodiversity and autism support group. Her new community supported her through a divorce and eventually helped her find a job.

At work, the diagnosis made it easier for her to simply ask for what she needed, like noise-cancelling headphones. “Rather than it being that I’m lazy or wilfully weird, or just can’t get with the program because of some kind of unexplainable defect, there’s kind of a framework for understanding why that is,” she said.

Numerous friends told similar stories. Their diagnoses, they said, explained years spent struggling with tasks that other people found simple. Over the years, this experience – blame and self-blame – had become an affliction in its own right. Francie Latour, who was diagnosed with inattentive ADHD two years ago, compared the situation to that of a person who, having lost the use of her legs in a car crash, is told over and over to get up and walk.

“It’s like you’ve spent your whole life at the bottom of a set of stairs, and there is a Greek chorus telling you: ‘Why can’t you just take the stairs? Why are you such a screw-up? Are you lazy? Are you trying to be difficult?’” said Latour, a writer and educator in Boston. “It’s great, at age 50, to realise you didn’t have the tools you needed to take the stairs.”

But as time passed, she said, that tide of relief receded. Permission slips and meeting notes still gave her trouble, and plenty of people still blamed her for it. If anything, when that became clear, she felt even more isolated, she said.

Another friend, four-and-a-half years out from her ADHD diagnosis, described a similar feeling of revelation, followed by a similar fade.

After trying a few different treatments, she has accepted that there’s most likely no magic bullet. Maybe, she told me, what will ultimately remain is frustration, that “this thing never changes about me”. But still, she said, she’d take it. The symptoms may still be there, but they no longer stir up self-hatred. “I still think I prefer it,” she said, “to thinking that I’m a bad person”.

“Trapped into an illness”

At the same time, evidence is emerging that over the long term, diagnosing milder conditions doesn’t help. Yes, there is a positive effect of lowered self-blame. But there is a negative effect, as well, of greater pessimism about recovery.

O’Connor, an associate professor of psychology at University College Dublin, tested this balance by comparing large cohorts of people who met diagnostic criteria for a disorder like depression or ADHD – one group that received a diagnosis, and one that did not.

What her team found, after controlling for symptom severity and socio-demographic factors, is that the diagnosed groups did somewhat worse. Young adults who were diagnosed with depression in adolescence had worse depression symptoms later, despite getting treatment; children who had been diagnosed with ADHD had worse peer relationships, worse self-image and worse emotional wellbeing.

Often, O’Connor said, adults feel some regret that they did not receive their diagnosis as children. “But the objective evidence we have suggests that might not actually have been the case,” she said. “They may well have had some benefits to their self-understanding, but they would also have been exposed to more stigma, more negative peer or teacher interactions.”

The results, she said, follow the logic of a self-fulfilling prophecy. Diagnoses set up expectations: young people who are told that they have anxiety may withdraw from social situations and miss opportunities to build relationships, which are known to protect mental health.

This is the alarm O’Sullivan sounds in The Age of Diagnosis. There’s no doubt, she said in an interview, that receiving a diagnosis brings some relief. And some diagnoses may provide a pathway to recovery, explaining that this illness usually lasts x long and resolves in x way.

The trouble, she said, is the labels that do not come with recovery stories, particularly neurodevelopmental disorders like ADHD or autism. “Although you’re relieved to feel explained and you’ve found a tribe, you are now trapped into an illness through the way you conceptualise it as a biological inevitability,” she said.

Maybe this doesn’t harm a patient who is in her 40s or 50s, whose life trajectory is established. “But if you’re a 15-year-old and someone conceptualises your difficulty as a brain developmental abnormality,” she said, “well, that’s a self-fulfilling prophecy right there.”

Wear it lightly

It is early, everyone agrees, to draw firm conclusions from the data. Rigorous longitudinal research on the benefits of treating milder disorders is just beginning to appear. Meanwhile, there is no sign that our appetite for diagnosis is abating. We are, in effect, voting with our feet.

So it is important to understand why individuals find relief in having a name. Isaac Ahuvia, a doctoral candidate at Stony Brook University who has tracked college students who self-label with anxiety and depression, said he regularly stumbles on this phenomenon in his data – some mysterious boost that follows diagnosis – and was thrilled to have words to capture it.

“I think it comes down to the Rumpelstiltskin effect,” Ahuvia said. “There’s just something about having an explanation. It feels validating, and it feels like it’s giving you a road map, and it makes you feel, on average, a little more in control.”

As for Aftab, since coining the term, he has gone back to his patients – adults and adolescents trying to manage daily life in the face of dread and grief and panic and despair. His exploration of the Rumpelstiltskin effect has not made him more liberal in diagnosing them, or more sparing.

If anything’s changed, it’s that he spends more time speaking with patients before he gives them the news. Often, what he tells them is not to take the exact label too seriously; he has seen what can go wrong when people build their identity around a diagnosis. Psychiatric problems are fuzzy and fluid, he tells them. They exist in a mesh of temperament and life story – “one thread,” he said, “in a much larger story of who you are”.

As for his fellow clinicians, he wants them to stop seeing diagnosis as a neutral, procedural step, and to understand the power that their words command – some social benefit, some stigma, some fatalism, some identity – and that they will continue to resonate in the patient’s life, like a bell that will not stop ringing.

This article originally appeared in The New York Times.

Written by: Ellen Barry

Photographs by: Alex Merto

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