On May 8, 2021, in an awkward opening monologue, Elon Musk created a small controversy when he claimed to be making history as the first person with Asperger’s to host Saturday Night Live. The next day, Marlow Stern of The Daily Beast pointed out that former cast member Dan Aykroyd has Asperger’s Syndrome and returned to host in 2003. As a secondary issue, the intelligencia were quick to point out that the Asperger’s diagnosis was eliminated in 2013 and blended into Autism Spectrum Disorder (American Psychiatric Association 2013), so more accurately Musk had autism or ASD. However, rarely mentioned in the aftermath was the origin of his diagnosis. According to his biographer Walter Isaacson (2023), Musk was never diagnosed by a qualified mental health professional. He diagnosed himself. And Musk is not alone. He is part of a growing do-it-yourself trend: self-diagnosis.

The Art of Self-Diagnosis

Of course, we often diagnose ourselves with medical conditions. We know when we have a cold, the flu, or allergies. These conditions are normally treated with over-the-counter drugs, and when we feel them coming on, most of us head to the pharmacy without bothering to call a doctor first. During the pandemic, we got far more skilled at self-diagnosis. Almost everyone can now perform a rapid lateral flow antigen test for COVID-19. The anti-viral drug Paxlovid requires a prescription, but for most vaccinated people, the treatment for COVID-19 is simply to quarantine at home and wait it out. Some of us call our doctors for guidance, but once the at-home tests became available, the diagnosis was most often left up to us.

The free market nature of healthcare in the United States allows citizens to make choices and be more active in their medical care than in many other parts of the world, which probably encourages self-diagnosis. Whenever we watch television, we are confronted with a ceaseless parade of pharmaceutical commercials marketing drugs for every imaginable problem directly to us, the consumers. To get your hands on one of these compounds, you will have to go to a doctor to determine if “[strangely named pharmaceutical product] is right for you,” and your doctor will be in charge of making a diagnosis and writing the prescription. But US law encourages consumers to be active participants in the choice of treatment for their ailments, if not the formal diagnosis. One of the first things you notice if you turn on a television in Europe is the absence of drug advertisements reciting long lists of distasteful side effects (e.g., “some patients have been known to grow a second head that barks like a dog”).¹ The European Union prohibits the direct marketing of prescription drugs; however, whenever a junk food commercial appears in France, you may have to endure little messages at the bottom of the screen warning you about the hazards of too much candy or too many potato chips.

The pharmaceutical industry is not the only influence on self-diagnosis in the American world of free market medicine. Various hospitals and clinics are hungry for patients, and self-diagnosis can help to bring them in. The illustration below comes from a large clinic that treats patients with obsessive-compulsive disorder (OCD), among other conditions. Like many other healthcare firms, this one offers an online test to determine whether you have OCD. Formal diagnosis can only be made by a qualified mental health professional, but these tests can often be the first step on the way to diagnosis and treatment. It’s likely some people take these tests and assume they have the disorder but never follow through to get a formal diagnosis or treatment. Although this particular agency is a nonprofit, many U.S. hospitals and medical groups are for-profit, and attracting potential patient-customers is important marketing strategy.

Finally, self-diagnosis is being fueled by TikTok, YouTube, and various smartphone apps. During the pandemic we heard about Tourette’s Syndrome on TikTok—TikTok tics—and the resulting surge in diagnosis of this rare movement disorder. Researchers have documented substantial levels of self-diagnosis of Tourette’s, depression, bipolar disorder, obsessive compulsive disorder, schizophrenia, and autism spectrum disorder (David and Deeley 2024; Rutter et al. 2023).

The research in this area is still sparse, but some aspects of the self-diagnosis phenomenon are coming into focus. For example, an obvious question is how good lay people are at diagnosing themselves. A group of researchers at the University of Indiana Bloomington attempted to answer this question by surveying two large samples—one of adult Twitter users and another drawn from a university student research pool (Rutter et al. 2023). All participants were surveyed online and, for a list of several disorders, the researchers used the phrase “I haven’t been diagnosed, but I should be” to identify self-diagnosers. In addition, participants were asked to fill out standardized questionnaires that are used to diagnose these disorders. The results were mixed across the two samples, but a somewhat surprising finding was that for the most common conditions—depression and generalized anxiety disorder—the self-diagnosers were relatively accurate, reporting comparable levels of symptoms as people who had been formally diagnosed. Self-diagnosers were considerably less accurate in identifying rarer conditions, such as panic disorder, mania (a feature of bipolar disorder), and somatic symptoms (pain or shortness of breath). Based on these results, the researchers concluded that common conditions were more likely to produce accurate self-diagnosis.

Self-Diagnosis and Social Media

Mental health professionals worry about the many negative effects of social media—particularly for young people—and among these concerns is social media’s encouragement of self-diagnosis (David and Deeley 2024; Frey et al. 2022; McVay 2023). On the one hand, the internet can be an excellent source of information about medical and psychological conditions—as long as you can separate the wheat from the chaff—but the popularity of self-diagnosis is a growing concern. In an August 2023 interview, Jennifer Katzenstein, PhD, director of psychology, neuropsychology and social work at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, said that errors in self-diagnosis can lead to “incorrect perceptions of one’s mental health and as a result can cause unnecessary stress and anxiety,” as well as delays in starting appropriate treatments (McVay 2023). I did not find any good estimates of the number of correct vs. incorrect self-diagnoses, but a U.K. clinic-based study suggests that many errors are possible. In this case, researchers did a retrospective analysis of people who had been referred by physicians, psychiatrists, or other professionals to a national clinic specializing in autism, and they found that almost half of those referred did not meet the criteria for autism spectrum disorder (Russell et al. 2016). However, of those who did not meet the criteria for ASD, 57 percent were diagnosed with one or more other conditions, including attention deficit hyperactivity disorder (ADHD), generalized anxiety disorder, OCD, and mood disorders. So, the potential for errors in self-diagnosis seems quite large.

A Children’s Hospital of Philadelphia webpage on the strengths and weaknesses of formal diagnosis versus self-diagnosis.

Despite the many expressions of concern by mental health professionals (e.g., David and Deeley 2024; McVay 2023; Rutter et al. 2023), some medical organizations appear to be embracing self-diagnosis. The image above is a page titled “Wondering if you are autistic?” from the Children’s Hospital of Philadelphia that lists the pros and cons of formal- vs. self-diagnosis. Rather than directly discouraging self-diagnosis, the article lists strengths and weaknesses of both approaches and gives several reasons why “you might not need to pursue a formal diagnosis” (Children’s Hospital of Philadelphia 2023). It is not surprising that this acceptance of self-diagnosis is associated with autism because, as I’ve written in previous columns (Vyse 2022a; 2022b), the autism spectrum has become highly politicized, with much of the conversation dominated by verbal individuals on the less severe end of the autism spectrum. Many of these people have adopted autism as an identity relatively late in life and have found it rewarding to be part of a neurodiverse community. The Children’s Hospital webpage makes direct reference to these benefits in one of the reasons given for not needing a formal diagnosis: “You are primarily interested in connecting with other autistic people.” If you are “primarily interested in connecting,” then formal diagnosis carries a couple of risks: (1) you will not receive the diagnosis you are looking for and (2) you will receive a formal autism diagnosis that may limit your options in the future (e.g., creating barriers to employment). Self-diagnosis guarantees success and keeps your future options open.

Some autism advocates also deliberately discourage formal diagnosis based on the fear of discrimination. I recently gave a presentation at a conference in which I briefly mentioned autistic self-diagnosis, and an anonymous commenter later wrote: “Also self diagnosis is a thing due to racism and really just all the -isms.” Echoing this view, Instagram user @livedexperienceeducator, who describes themself as a “trans + neurodivergent advocate,” posted the image below on April 3, 2021, claiming that autistic self-diagnosis was more valid than professional diagnosis. In subsequent images in that post, @livedexperienceeducator pointed to discrimination against a number of groups and formal diagnosis based on “stereotypes, biased information and plain wrong information.” No actual evidence was provided, and contrary to this view, if the approach offered by the Children’s Hospital of Philadelphia is indicative, I suspect very diverse groups of patients will be warmly welcomed at many autism clinics throughout the country.

Instagram post by @livedexperienceeducator

Of course, doctors also make diagnostic errors, and the cynical observer might point to the profit motive in the healthcare industry and professional psychiatry’s interest in maintaining a monopoly on diagnosis and the prescription of psychoactive drugs as motivations for promoting formal diagnosis. But there is good evidence that smartphones are fueling a kind of social contagion of psychiatric conditions among young people. Some of the clearest evidence comes from the COVID-19-era TikTok Tourette’s phenomenon. Mental health professionals pointed to a rise in what they called functional tic-like behaviors (FTLB) that were distinct from those of classic Tourette’s syndrome in a number of ways (Haltigan et al. 2023). FTLB emerged later than classic Tourette’s (at twelve to twenty-five years), as an abrupt outbreak of symptoms—often over hours or days rather than gradually over years—that predominantly affected the upper limbs, the areas of the body that are most visible in TikTok videos. Finally, a large majority of those developing FTLB were adolescent girls, the core users of TikTok (Haltigan et al. 2023, 2).

In addition to autism and Tourette’s syndrome, researchers have noted the emergence of online communities for ADHD, dissociative identity disorder (DID), borderline personality disorder, and bipolar disorder, among others (Corzine and Roy 2024). Many of these individuals find each other using internet hashtags, such as #tourettes, #adhd, #did, and #actuallyautistic, a somewhat ironic phrase given the popularity of self- rather than formal diagnosis in the autism community. It is clear that many people derive social benefits from identification with these groups under the broad label of neurodiversity. Within the autism advocacy community, the adoption of autism as an identity is explicitly endorsed. In another image of their April 3, 2021, Instagram post, @livedexperienceeducator (who has 94 thousand followers), wrote, “autism is part of our identity and integral to who we are rather than a clinical disease or disorder and professionals do not have the right to challenge our identities.” Another Instagram user, @Colourblind_Zebra, posted the “Neurodivergent is an umbrella term” image below. The bright colors and rainbow background suggest that by adopting one of these psychiatric labels as your identity you can join a warm neurodivergent community and take pride in who you are. If this community appeals to you, self-diagnosis is your free ticket for admission and, unlike formal diagnosis, it avoids the risk of getting a different diagnosis or no diagnosis at all.

A March 22, 2024, post by Instagram user @Colourblind_Zebra

What’s Wrong with Self Diagnosis?

Many people are comforted by having a label for their problems, and this is often a very good thing. Understanding that you suffer from an inherent condition provides an explanation for your experience and can make it easier to seek help. In addition, it’s obvious that many young people find it appealing to be part of the neurodivergent community. So, what’s wrong? Why should we be concerned? For me, there are at least three reasons.

First, there is good evidence that, but for smart phones and social media, this would not be happening. As social psychologist Jonathan Haidt has recently pointed out, young people—particularly young girls—are suffering at much higher rates, and this loss of mental health coincides with the adoption of smartphones and social media. According to the CDC’s Youth Risk Behavior Survey, 57 percent of teen girls reported persistent sadness or hopelessness in 2023, up from 36 percent in 2011. Initially, the evidence for a social media effect was just correlational, but in recent years it has been bolstered by the results of randomized control and quasi-experimental studies (Haidt 2023).

The unhappiness of youth is not only caused by smartphones. Haidt also points to the over-protection of children beginning in the 1990s when free-range unsupervised play was largely eliminated in many Western countries, removing an important method of acquiring competence and autonomy. (I also bemoaned the historic loss of free play in a TEDx talk ten years ago.) But the evidence of deleterious effects of smartphones and social media is mounting, and it is not just correlational anymore. Restricting access to smartphones and social media makes both young people and adults happier. It is not clear how to do this now that the social media Pandora is out of the box, but it seems clear that self-diagnosis and the expansion of neurodivergent identity groups is an outgrowth of these modern devices, apps, and websites.

Second, as the U.K. clinic study suggests, the potential for misdiagnosis is substantial. In particular, people who think they have autism, Tourette’s syndrome, or some other condition may be suffering from another disorder for which there is an effective treatment. Without formal diagnosis, many treatable conditions are likely to be missed.

Finally, the “umbrella” of neurodiversity, when filled with vocal people who have chosen these labels as identities, diminishes—and in some cases, completely denies—the substantial needs of people who don’t have a choice about their diagnosis. People like writer Freddie DeBoer who suffers from bipolar disorder and, in an emotional YouTube video, asserted that he desperately needs his medications to live a somewhat normal life and does not have the luxury of embracing his unmedicated self as a somehow more authentic person. There are many people who need substantial help and for whom mental illness is not a lifestyle choice. Unfortunately, much of the rhetoric of the neurodiversity movement is in direct opposition to the needs of people with these more severe conditions.  

Sadly, in the United States, some people still cannot afford mental health treatment, and there are undoubtedly other barriers to getting a formal diagnosis. But self-diagnosis is not the answer. There is no reasonable justification for rejecting the expertise of trained mental health professionals, and self-diagnosis is inherently prone to biases that make the outcome suspect. In my view, it is always best to get a more objective opinion—or two—rather than do it yourself.

References

American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Washington, DC: American psychiatric association.

Children’s Hospital of Philadelphia. 2023. Wondering if you are autistic? (October 13). Online at https://www.research.chop.edu/car-autism-roadmap/wondering-if-youre-autistic

Corzine, Anjuli, and Ananya Roy. 2024. Inside the black mirror: Current perspectives on the role of social media in mental illness self-diagnosis. Discover Psychology 4(1): 40.

David, Anthony S., and Quinton Deeley. 2024. Dangers of self-diagnosis in neuropsychiatry. Psychological Medicine 54(6): 1057–60.

Frey, Jessica, Kevin J. Black, and Irene A. Malaty. 2022. TikTok Tourette’s: Are we witnessing a rise in functional tic-like behavior driven by adolescent social media use? Psychology Research and Behavior Management 15: 3575–85.

Haidt, Jon. 2023. Social media is a major cause of the mental illness epidemic in teen girls. Here’s the evidence. AfterBabel.com (February 22). Online at https://www.afterbabel.com/p/social-media-mental-illness-epidemic.

Haltigan, John D., Tamara M. Pringsheim, and Gayathiri Rajkumar. Social media as an incubator of personality and behavioral psychopathology: Symptom and disorder authenticity or psychosomatic social contagion? Comprehensive Psychiatry 121(February): 152362, 1–5.

Isaacson, Walter. 2023. Elon Musk. New York, NY: Simon & Schuster.

McVay, Ellen. 2023. Social media and self-diagnosis. Johns Hopkins Medicine (August 31). Online at https://www.hopkinsmedicine.org/news/articles/2023/08/social-media-and-self-diagnosis

Russell, Ailsa J., Clodagh M. Murphy, Ellie Wilson, et al. 2016. The mental health of individuals referred for assessment of autism spectrum disorder in adulthood: A clinic report. Autism 20(5): 623–27.

Rutter, Lauren A., Jacqueline Howard, Prabhvir Lakhan, et al. 2023. ‘I haven’t been diagnosed, but I should be’—insight into self-diagnoses of common mental health disorders: Cross-sectional study. JMIR Formative Research 7(January): e39206. Online at https://doi.org/10.2196/39206.

Vyse, Stuart. 2022a. Autism politics and the death of truth and freedom. Skeptical Inquirer (September 21). Online at https://skepticalinquirer.org/exclusive/autism-politics-and-the-death-of-truth-and-freedom/.

Vyse, Stuart. 2022b. Is autism really a spectrum? Skeptical Inquirer (May 4). Online at https://skepticalinquirer.org/exclusive/is-autism-really-a-spectrum/.

Note

1. This is a joke; it is not a known side effect of any drug.