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These forms of neurodivergence are often missed in girls. Now, women are self-diagnosing later in life thanks to social media. But is this really a good idea?
Throughout her life, Caitlin Manner, 38, has been surrounded by people whose brains work in unique ways. Her mom, dad, twin sister, younger brother, and one of her three sons all have
attention-deficit/hyperactivity disorder (ADHD). Her oldest and youngest are on the autism spectrum. She’d always thought of herself as the exception—until she got on TikTok.
A busy mom in a military family, Manner struggled to manage her sons’ medical appointments on top of school, sports, and housework. She tried keeping open planners in her bedroom, office, and kitchen to ensure she didn’t forget anything. But in the early spring of 2021, she missed an important appointment her oldest needed to continue speech therapy. The family’s health insurance company made them jump through all sorts of hoops to get coverage, and they’d already waited weeks for a coveted appointment. Now, they’d have to wait three months to snag a new one.
“It was really frustrating because I knew how important it was and still couldn’t keep track of it,” Manner says. Despite her best efforts, her system wasn’t working. Then the pandemic hit.
Desperate for a social outlet, Manner started spending more time on TikTok. “It was a life preserver for those long days,” she says. Videos about ADHD began to pop up on her For You page (FYP), recommendations pulled by TikTok’s algorithm. Manner found herself relating to others’ stories—like how she could hop from chore to chore, never quite finishing any of them. “And by the end of the day, my house is a fricking mess and I haven’t accomplished anything,” she remembers, quoting a video. When Manner heard that, she thought: This is me.
In April 2021, she went in for a consultation with a licensed clinical psychologist. After a discussion about her personal history and symptoms as well as a series of assessments, he confirmed that she had ADHD. “It gave me a name for it, which meant I could start reframing my life,” she says.
In the past few years, TikTok and other forms of social media like Instagram and Facebook have grown into makeshift mental health support networks. While more studies are needed on how apps may impact us psychologically, TikTok has already served as a gateway to self-diagnosis for an untold number of users. “I think it’s clear that our systems are woefully under-equipped to manage the emerging mental health crisis happening in our nation right now,” says Wizdom Powell, PhD, associate professor of psychiatry and director of the Health Disparities Institute at UConn Health. “It’s not surprising to me that under those conditions people would turn to self-help resources more frequently, and in particular, rely on social media.”
Consider this your introduction to the growing online community of neurodivergent people, plus what to do if you suspect the algo’s got you figured out.
Being ND—or neurodivergent—means your brain operates in a way that’s different from what society would consider “normal” or “average” (a.k.a. “neurotypical” or NT).
It’s an extension of the idea of neurodiversity, says Lawrence Fung, MD, PhD, a psychiatrist and director of the Stanford Neurodiversity Project. Neurodiversity highlights the fact that we all exist on a spectrum with varying levels of strengths and challenges based on neurological and behavioral traits. There’s no set definition of what “counts” as neurodivergence. Rather, it’s an umbrella term used to refer to many neurological conditions linked to special ways of thinking, communicating, and being in the world in order to advocate for society to acknowledge and accommodate them. Among others, these may include ADHD, autism, obsessive-compulsive disorder (OCD), Tourette’s syndrome (TS), and learning differences such as dyslexia.
Social media provides people with a virtual space to share their experiences with neurodivergence, dispel stigma with jokes and memes, and trade notes on self-advocacy. And more people are joining. In 2020, TikTok use surged by 180 percent among 15- to 25-year-olds, according to Statista. By 2021, TikTok had become the most-downloaded app in the U.S., with 94 million downloads. Women account for over 60 percent of users, and the average American spends 25.6 hours per month scrolling on the app. During the same time period, self-reported mental health concerns went up, from 1 in 10 adults in 2019 to about 4 in 10 by 2021, per KFF, previously known as Kaiser Family Foundation.
This isn’t to suggest that all or most of these folks were on TikTok—or another social media platform—and that it directly led to their concerns. Some of these people may have been experiencing a rise in pre-existing conditions’ symptoms with all the life changes related to the pandemic. And, being exposed to content that could give them a name for what they were feeling may have pushed them to see their struggles as real problems, perhaps ones related to neurodiversity. Certainly, for some TikTok users, ND creators helped them connect with diagnoses that had been there all along, and in a perfect world, would have been identified and treated a long time ago.
Many forms of neurodivergence are typically diagnosed in infancy or childhood. But girls, women, and gender-noncomforming people don’t always fit the typical diagnostic criteria of those with neurodivergent medical issues, and instead their conditions are misunderstood to be personality defects or quirks (see: hyperactive boy as the face of ADHD versus girl with inattentive-type ADHD shrugged off as a daydreamer or…just a lazy, messy kid).
And, girls often develop coping skills that help them work around life-disrupting symptoms. In fact, studies suggest ADHD and autism may be underdiagnosed in women due to harder-to-identify symptoms and girls’ ability to “mask” differences by imitating others. Plus, accessing a professional screening to get a diagnosis is out of the question for many—especially those in marginalized communities that are low on time, money, and resources; lack access to quality health insurance and healthcare; or could face medical discrimination and bias due to factors like their gender, sex, or the color of their skin. After years of thinking something’s not quite right, finding a label can feel transformative—even if it’s a TikTok video that finally illuminates the possibility.
When Ceasarae Galvan, 25, got on TikTok in 2019, her FYP and videos from creators like @domesticblisters (a licensed therapist and author who often speaks about ADHD) and @paigelayle (a woman on the autism spectrum who shares about her experience) led to her own diagnoses of ADHD and autism.
Since starting therapy and finding a medication that works for her, she says she’s feeling better. But she’s also had to navigate heavy feelings of anger and resentment. She believes she could have reached a higher potential if she’d been diagnosed sooner. Now, she’s working on making changes: “The way I interact professionally at work, the way I do my laundry, all of it is now designed to work for my brain without any shame,” she says. A weekly meeting with her supervisor, flexible work setup, and plenty of baskets for organization help her thrive.
For Mika Basson, the upsurge in stress caused by the pandemic led symptoms she was initially able to deal with to become unbearable. The 29-year-old screenwriter was diagnosed and treated for ADHD as a child and thought she’d grown out of it until the “mountain of responsibilities” of adult life began to overwhelm her. She says seeing a video on the pros and cons of living with ADHD on Instagram gave her license to accept her struggles as a reflection of her ADHD rather than “just laziness.” After an appointment with a psychiatrist, she’s back on medication. But she also acknowledges the benefits of ADHD, like being super-energized and creative. “Talking a million miles a minute is welcomed when I write, coupled with the skills I’ve adopted to keep myself organized and structured,” she says. “I’ve made peace with this peculiar but beautiful part of my brain and embrace it with love and understanding.”
There’s no one set path for how to deal with a suspected diagnosis, but one thing these women share is gratitude to social media for normalizing their struggles and encouraging them to seek help.
First, there’s the potential for a misdiagnosis or over-diagnosis. Some creators share unreliable information, water down diagnoses, or even pathologize everyday struggles as signs or symptoms you *definitely* have X (see: put-a-finger-down style videos that reduce a complex condition to a set of brief descriptions). Case in point: 52 percent of videos on #ADHD on TikTok presented misleading claims, according to a study published in the Canadian Journal of Psychiatry. Ads can be tricky too. Mental health support companies that share misleading, influencer-esque videos on TikTok, for example, have been criticized by health experts for oversimplifying ADHD as well as Media Matters, a nonprofit watchdog group that scours the web for misinformation.
After Sammi Burke, 28, an EMT, writer, and editor, began to suspect she had ADHD thanks to her FYP, she scheduled an appointment with a psychiatrist. She wasn’t a “textbook case,” but because she showed some symptoms, they tried medication. It didn’t seem to work and costs were piling up, so Burke dropped her treatment. She later realized some factors that made it difficult for her to focus on her computer work may have been more situation-based: loud neighbors whose kids were up late could be a frustrating distraction for anyone. She also had an excessively heavy workload due to staffing cuts at the publication where she worked, and she had to take frequent breaks to rest her eyes from so much screen time.
“I still don’t know if I for sure have ADHD,” she says. “I wasn’t so much looking for a label as a way to get through my workday.” Since leaving her high-stress job, that’s become a little easier. Because of this, she believes burnout was also an issue for her. In Burke’s case, the algorithm wasn’t on the nose in terms of what she was dealing with, and may have led her down a path that wasn’t a good use of her time. It’s not an uncommon experience. Still, if someone is struggling (for any reason) and seeks help, they deserve professional support and clarity, experts say—whether or not they fit the diagnostic terms for the initial condition they think they’re living with.
It can be difficult for people who might not fall onto an extreme end of the spectrum to differentiate between challenges with universal or temporary causes (like the economy, hustle culture, what Burke experienced) and those that are more personal or permanent (neurodivergence).
Another issue? The horoscope effect (a.k.a. “Barnum effect”), or the way repetitive, widely-relatable content can lead someone to believe they have a diagnosis whether or not they do, says Dr. Powell. When it feels like the algorithm is psychic or magical, it’s tempting to take video suggestions as meaningful insight about who you are.
TikTokers often recommend taking heaps of online assessments for conditions like ADHD or autism, but these tests were not designed to be used that way. They’re best taken with the help of a clinician who can expand on your initial answers and search for subtleties that could indicate different or co-occurring diagnoses. A diagnosis “is really not cut and dry, and it’s not about a checklist,” says Dr. Fung. Without help, you might also miss medical diseases that masquerade as other conditions or overlap with them, such as hyperthyroidism which, like anxiety, could cause a racing or irregular heartbeat.
“It’s important to not get too entrenched in a diagnosis without speaking or corroborating with a mental health professional, because it takes a trained brain to synthesize all of those data points in conjunction with your medical, psychological, and psychiatric presentations in order to arrive at the correct diagnosis,” says Sasha Hamdani, MD, a board-certified psychiatrist on TikTok as @thepsychdoctormd and author of Self-Care for People With ADHD.
It’s true that “diagnosis is a privilege” due to limited access to mental health care, says Inna Kanevsky, PhD, a psychology professor who debunks viral mental health myths on TikTok as @dr_inna. The same biases that result in girls, women, and gender-nonconforming people—especially those of color—being dismissed by doctors and facing barriers to quality care, mean getting a formal diagnosis isn’t always simple or possible. Still, it’s worth pursuing to see if you could benefit from treatment or formalized accommodations.
► If content on neurodivergence is resonating with you and your symptoms are significantly affecting your ability to get by, the next step is to seek a professional screening. Find a provider with these tools:
• Psychology Today’s directory
• To Write Love On Her Arms’ directory (for free or low-cost services in your area)
• The Center for Autism Research’s CAR Autism Roadmap resource directory
From there, at the very least, getting information from reputable sources is essential to make sure you’re not building an explanation or understanding of yourself based on bad intel.
For Manner, TikTok was a gateway to deeper knowledge of herself and how to care for her mental health. She has yet to receive treatment for ADHD as her family had to move shortly after she was diagnosed. But she’s looking forward to starting the process. In the meantime, she’s working on being more compassionate with herself. “I’m much better at self-advocating for time to regulate, and my understanding of myself has improved immeasurably,” she says, “and it was all thanks to strangers in a 60-second format.”
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