A closer look at self-diagnosis
by Laura Wheatman Hill
3D Illustration by Anastasia Kraynyuk. Our nonprofit generates funding in multiple ways, including through affiliate linking. When you purchase something through an affiliate link on this site, the price will be the same for you as always, but we may receive a small percentage of the cost.
Increasingly, and largely thanks to the abundant health resources that are now available for free online, people are self-diagnosing these days — but should they?
For some of us, social media is more than just a tool for information and entertainment — it’s also a place to explore mental health self-diagnosis. These are issues that may have gone previously undetected, but it’s only natural to wonder if we have various conditions, disorders, or neurotypes when we see ourselves represented in what we’re reading online. While we may go on to get formal testing and medication, a significant number of us also find community in these online groups, even without a formal diagnosis. Clinicians and parents of people who self-diagnose warn of the potential harm of joining these communities without a licensed opinion in the mix, and people looking to join may worry about acceptance without a formal diagnosis, but there’s more room and nuance in self-assessment these days than ever before — and more strangers online willing to help walk others through the steps than has been possible in the past.
Online diagnosis by the numbers
While research around self-diagnosis online is relatively new, some data exists to support the claims that people are using social media (and other online resources) to either diagnose themselves or develop a strong suspicion that leads them to a health provider’s office. A recent social media self-diagnosis study reports that one in four people have self-diagnosed based on information they get from social media. Of those, only 43% go on to get formal testing done. However, among those who do get tested, 82% get their diagnosis confirmed. These numbers indicate there’s some merit to the idea of screening yourself based on what you see online.
The platform used to self-diagnose also makes a big difference. Perhaps not surprisingly, YouTube videos are often cited by those exploring their possible diagnosis. There are a lot of videos on anxiety for instance, which is a condition often self-diagnosed and later confirmed by professional assessment. TikTok, with its short videos full of informative content and sticky algorithmic tactics, hosts a nearly unending stream of mental-health-related posts. Reddit, with its space for deep dives and specificity, might be a place where people learn to believe they have autism traits. Instagram, Tumblr, Pinterest, Facebook, and others also have a high volume of health content meant to reach and help those with a formal diagnosis as well as those without one. It may not be surprising then that Gen Z uses social media to self-diagnose more than any other age demographic, followed by millennials, then Gen X, and finally baby boomers.
Drawbacks of self-diagnosis
There are several reasons one might not want to base their assumptions about themselves on social media. Many of the self-proclaimed experts on these platforms are not actually qualified health professionals, which can lead to a dissemination of incorrect information or the overgeneralization or oversimplification of a condition — something that has been an issue across the board with social media. The danger of misdiagnosis increases with this method, with OCD being the condition least likely to be confirmed by follow-up testing. Some say online self-diagnosis content is fearmongering and can lead to an increase in medical anxiety about the process of receiving care and the likelihood that one will be treated properly.
Since many young people are self diagnosing, parents may be concerned about these drawbacks. “Parents, talk with your kids about what they’re learning in online communities that revolve around a diagnosis or self-diagnosis. Ask them whether they think what they’ve learned is accurate. And ask them what they would do if they came across information that was misleading or inaccurate,” says Tia Kim, PhD, a developmental psychologist and vice president of education, research, and impact at Committee for Children, a leading nonprofit advocating for child safety and social-emotional well-being. For people of any age, medicating based on a self-diagnosis is not recommended. Always make sure your healthcare providers have your complete medical history before embarking on a new treatment plan.
Benefits of self-diagnosis
In lieu of a formal diagnosis, which some people may not want or have access to, many find solace and community in online content geared toward different conditions or neurotypes. When it’s accurate, these social media platforms can provide improved access to information, which can lead to earlier detection. More people speaking about their lives yields increased awareness, empathy, community, and can even propel further research. And talking openly online and embracing the fact that there are many ways to think, behave, and live can help reduce stigma and offer a sense of empowerment for those whose brains just are not on a neurotypical path.
The positive effect of community should not be discounted. “Online communities might be one way your child is trying to add more of that social support into their lives,” says Kim. She says, “having strong relationships with others is one of the foundations to helping kids lead a happy, healthy life. In fact, having strong social support systems is associated with increased academic performance, increased resilience in the face of adversity, and reduced risk of participating in negative behaviors like drug use.” Online support helps especially when people see diagnoses being shared more freely than they are offline or when someone is unable to get in-person care.
Finding community without a diagnosis
Anastasia Kraynyuk
Some people find solace and tangible help among communities in which they do not technically belong. Creators with ADHD often make content about executive function, since people with ADHD can struggle to complete tasks if they’re not broken down. But people who do not have ADHD, but who have other conditions such as PTSD or brain fog can also have executive dysfunction and might find practical advice from ADHD-geared content.
One controversial and often-discussed community when it comes to self-diagnosis is those who identify as autistic. Dr. Devon Price, social psychologist, professor, and the author of Unmasking Autism is a proponent of people using a self-diagnosis to identify with a community, especially because he argues, “conventional autism assessments are informed by what's called the pathology profile — and many self-realized autistics reject the idea that autism is a pathology, seeing it rather as a social identity one can self-identify into, such as with queerness.” He says it is “value neutral” and “a diagnosis is not necessary.”
Additionally, many people cannot get an autism diagnosis because a formal diagnosis is not covered by their health insurance and, says Price, because these assessments are often designed for children with a bias toward white, affluent males. While a formally diagnosed person can apply for disability accommodations at their school or university, a diagnosed autistic person can be denied refugee status or the right to immigrate to numerous countries (such as New Zealand and the UK). An autism diagnosis might help you pursue a discrimination case against an employer — if you have documented proof and can hire a lawyer to help you take action. But that same autism diagnosis can get you forced into a legal conservatorship, interfere with child custody, or can get you denied other medical treatment. Therefore, many people choose not to pursue diagnosis.
Many people in a community who are not formally “labeled” as such can still reap benefits from being part of said community, Price argues. “If you see yourself reflected in our struggles, if you feel at home among us, if you stand to gain from our liberation, and if you want to be here — you belong,” he says. “What I would caution is for anyone new to a community to check their assumptions, and to take a little while to get acclimated to the world and the community. If you've just been diagnosed or you just self-diagnosed, you have some significant learning and unlearning to do. Be mindful of that, of course, but don't ever stifle yourself simply for not having a piece of paper.”
And remember: being part of a community isn’t about a doctor’s note — it’s about finding your people.