Around the time of the pandemic, I started noticing a pattern among my friends and acquaintances. A close friend, then in her early 50s, received an Attention Deficit Hyperactivity Disorder (ADHD) diagnosis. She described it as a tremendous liberation, freeing her from years of self-reproach over missed deadlines and lost receipts, but also more intricate struggles like her acute sensitivity to injustice.
A similar experience unfolded for a colleague, a cousin in his 30s, and a growing number of individuals I encountered while covering mental health. While ADHD was common, for some, the pivotal moment was an autism spectrum disorder diagnosis. After years of feeling an unspoken discomfort in social settings, they found immense relief and a sense of belonging within the neurodivergent community.
Since then, I’ve heard countless stories from people who, in midlife, received diagnoses for conditions such as binge eating disorder, post-traumatic stress disorder (PTSD), and anxiety. Almost without exception, they reported that the diagnosis brought relief. Sometimes, this led to effective treatment. Yet, surprisingly, even just identifying the problem – giving it a name – often seemed to be a significant help.
We constantly hear about the increasing rates of chronic conditions like autism, ADHD, depression, anxiety, and PTSD. Figures like Health Secretary Robert F. Kennedy Jr. interpret these trends as evidence that Americans are becoming “the sickest people in the world,” prompting him to challenge public health systems in search of root causes, such as vaccines or environmental toxins.
However, much of this surge reflects changes in diagnostic approaches, as medical labels are now applied to increasingly milder forms of these conditions. Several factors contribute to this: the diminishing stigma surrounding many disorders, widespread mental health screenings in schools, the rise of self-diagnosis through social media, and clinicians’ efforts to intervene early during a mental health crisis.
A few years ago, critics began to voice concerns that this expansion might be causing real harm. Some argue that by broadening diagnostic categories, the most severely ill individuals are losing crucial attention from the medical establishment.
Others contend that even those with milder illnesses aren’t truly benefiting, especially younger individuals. They suggest that a diagnosis can initiate a self-fulfilling prophecy. As Irish neurologist Suzanne O’Sullivan explains, labeling mild or transient symptoms as disorders might create an “expectation of illness” even “where there is little or no disease.”
Researchers studying the long-term impacts of diagnoses are beginning to observe this effect. Diagnoses can indeed feel binding, implying a biological inevitability rather than a temporary rough patch.
So, this begs the question: why do they also appear to help?
Naming the Imp
Alan Levinovitz, a philosophy and religion professor at James Madison University, noticed a surge in diagnosis rates from his classroom. Disability accommodation requests, predominantly for ADHD and anxiety, consumed more and more of his time, making it hard to find sufficient testing space for all students requiring support.
Yet, driven by curiosity, Levinovitz started reading personal accounts of diagnosis on social media. He discovered that these narratives weren’t primarily about accommodations. Instead, they spoke of a different, more enigmatic benefit: the “existentially transformative nature of the diagnosis itself.”
He shared this insight with his friend Awais Aftab, a psychiatrist and author of a popular mental health newsletter. Before Levinovitz could fully explain, Dr. Aftab confirmed: yes, he saw it all the time. Certain patients, upon receiving a diagnosis, experienced an overwhelming sense of “strong, tremendous relief.”
Dr. Aftab, a clinical associate professor of psychiatry at Case Western Reserve University, noted that this psychological benefit of diagnosis “seems to go beyond” concrete advantages like treatment or accommodations. It resembled the placebo effect – an improvement, typically attributed to positive expectation, that manifests after an inert treatment, a phenomenon doctors have utilized for centuries.
“To us, this is a version of the placebo effect that has gone, essentially, unnoticed,” Mr. Levinovitz explained. “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 observed this too. Cliodhna O’Connor’s team at University College Dublin analyzed 1,848 adult accounts of autism diagnoses and found that individuals “overwhelmingly” reported that the benefits outweighed the costs. The word “revelation” frequently appeared. Their primary regret was often not being diagnosed sooner, which could have spared them years of feeling “wrong” or “broken.”
This phenomenon clearly needed a name. The paper published by Mr. Levinovitz and Dr. Aftab in August in BJPsych Bulletin coined it the “Rumpelstiltskin effect,” referencing the imp from the Brothers Grimm fairy tale. In the story, a desperate woman can only break free from a malicious spirit if she can guess his name. She tries every name imaginable until she finally uncovers the right one, stripping the imp of his power. The authors suggest a similar dynamic occurs with a diagnosis, alleviating both uncertainty and self-blame.
“The therapeutic effect of feeling like you have an explanation for something, an official explanation, it’s really remarkable,” Mr. 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 evidence of this benefit is widespread. When I asked people about their diagnoses, they used phrases like “Keyser Soze moment,” “eureka moment,” and “massive tidal wave of recognition.” Karen Lean, 48, an IT specialist diagnosed with autism in her 30s, recalled “feeling validated, relieved, recognized, perhaps even vindicated.”
Years prior, after leaving graduate school and feeling lost, she had subtly suggested to her psychiatrist, who was treating her for anxiety and depression, that she might be autistic. The psychiatrist dismissed the idea, telling her, “You just want a reason not to change.” Yet, Lean insists, the autism diagnosis changed everything. It provided, as she put it, an “explanatory model for why I was struggling.”
She began to avoid overstimulating environments like noisy, crowded places. She adopted a weighted blanket for sleep and pursued occupational therapy. Most significantly, she immersed herself in a local neurodiversity and autism support group. This new community became her anchor through a divorce and eventually helped her secure a job.
At work, the diagnosis empowered her to simply ask for what she needed, such as noise-canceling headphones. “Rather than it being that I’m lazy or willfully 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 explained.
Numerous friends recounted similar narratives. Their diagnoses, they said, finally explained years of struggling with tasks that seemed effortless for others. Over time, this cycle of blame and self-blame had become an affliction in itself. Francie Latour, a writer and educator in Boston who was diagnosed with inattentive ADHD two years ago, likened it to someone who, having lost the use of her legs in a car crash, is repeatedly told to simply 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?’” Ms. Latour said. “It’s great, at age 50, to realize you didn’t have the tools you needed to take the stairs.”
However, as time passed, that initial wave of relief began to recede. Permission slips and meeting notes still presented challenges, and many people continued to blame her. When this became apparent, she felt even more isolated.
Another friend, four and a half years post-ADHD diagnosis, described a similar sense of revelation followed by a gradual fading.
After experimenting with various treatments, she has accepted that a magical solution is unlikely. Perhaps, she shared, what will ultimately persist is frustration, that “this thing never changes about me.” Yet, she added, she still prefers it. The symptoms may remain, but they no longer trigger self-hatred. “I still think I prefer it,” she concluded, “to thinking that I’m a bad person.”
‘Trapped Into an Illness’
Simultaneously, evidence is emerging that, in the long run, diagnosing milder conditions may not always be beneficial. While there’s a positive effect of reduced self-blame, there’s also a negative consequence: increased pessimism about the possibility of recovery.
Dr. O’Connor, an associate professor of psychology at University College Dublin, investigated this balance by comparing large groups of people who met diagnostic criteria for conditions like depression or ADHD – one group with a formal diagnosis, and one without.
Her team discovered, after accounting for symptom severity and socio-demographic factors, that the diagnosed groups fared somewhat worse. Young adults diagnosed with depression in adolescence later exhibited more severe depression symptoms, even with treatment. Similarly, children diagnosed with ADHD often experienced poorer peer relationships, lower self-image, and reduced emotional well-being.
Dr. O’Connor noted that adults often express regret over not receiving their diagnosis earlier. “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 findings, she explained, align with the concept of a self-fulfilling prophecy. Diagnoses establish expectations: young individuals told they have anxiety might withdraw from social situations, missing opportunities to build relationships, which are vital for mental health.
This is the warning Dr. O’Sullivan raises in her book, “The Age of Diagnosis.” She affirmed in an interview that receiving a diagnosis undoubtedly brings some relief. And certain diagnoses can offer a clear path to recovery, detailing how long an illness typically lasts and how it resolves.
The problem, she argued, lies with labels that lack clear recovery narratives, 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 conceptualize it as a biological inevitability,” she said.
This might not harm a patient in their 40s or 50s, whose life path is largely set. “But if you’re a 15-year-old and someone conceptualizes your difficulty as a brain developmental abnormality,” she observed, “well, that’s a self-fulfilling prophecy right there.”
Wear It Lightly
Everyone agrees it’s too soon to draw definitive conclusions from the current data. Rigorous, long-term research into the benefits of treating milder disorders is just beginning to surface. Meanwhile, our societal appetite for diagnosis shows no signs of waning; we are, in essence, voting with our feet.
Therefore, it’s crucial to understand why individuals find such comfort in a name. Isaac Ahuvia, a doctoral candidate at Stony Brook University who tracks college students who self-identify with anxiety and depression, consistently encounters this phenomenon in his research – a mysterious boost following a diagnosis – and was thrilled to have a term to describe it.
“I think it comes down to the Rumpelstiltskin effect,” Mr. 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 Dr. Aftab, since coining the term, he has returned to his patients – adults and adolescents navigating daily life amidst dread, grief, panic, and despair. His exploration of the Rumpelstiltskin effect hasn’t made him more liberal or more cautious in his diagnoses.
If anything has shifted, it’s that he now spends more time discussing the diagnosis with patients before delivering the news. He often advises them not to take the precise label too seriously, having witnessed the pitfalls when individuals build their entire identity around a diagnosis. Psychiatric issues are complex and dynamic, he tells them. They are merely “one thread,” he said, “in a much larger story of who you are.”
He urges his fellow clinicians to move beyond viewing diagnosis as a neutral, procedural step. Instead, they should recognize the immense power their words hold – conveying social benefit, potential stigma, fatalism, and identity – and understand that these words will continue to resonate throughout a patient’s life, like a bell that simply won’t stop ringing.