A diagnosis...by algorithm
Emma Henterly was skeptical of Tik Tok. That is, until the social media app figured out what doctors had long missed
For years after Tik Tok debuted in 2016, Emma Henterly staunchly refused to download the popular social media app. As a millennial in her early 30s, she didn’t share younger generations’ fascination with the platform’s 15-second videos, which are created, watched and shared by users on cell phones.
But in her job as a writer and editor for Dispatch magazines and its flagship publication, Columbus Monthly, Henterly is tasked with proofing, copyediting and fact checking the work of other writers. So last year, when summer interns at the magazine decided to create a user’s guide to Tik Tok for “geezers” (Baby Boomers, Gen X-ers and Millennials), Henterly had no choice but to take a deep dive to check out the article’s accuracy.
For the uninitiated, when someone goes on Tik Tok, they’re fed a stream of videos which they can view, watch again, like, share, comment upon or “swipe” away to dismiss. Depending on the reaction, the platform’s sophisticated algorithm begins to curate and choose videos meant to appeal to the individual user’s preferences, personality and proclivities.
So there was Henterly, busily watching, liking and swiping, when she began to notice a theme emerging – videos on attention deficit hyperactivity disorder (ADHD) kept appearing in her feed. At first when titles like ‘Things I Didn’t Know were ADHD Until I Found Out I Had ADHD’ or ‘Seven Things You Probably Don’t Know Are Your ADHD’ popped up she thought, “This is ridiculous. These videos don’t apply to me.”
“But the more that got served to me, the more I started watching them all the way through and the more I started realizing, ‘Oh no, this is me!’ “ Henterly says. “I identified with so many of them that I started thinking, ‘You know, this might actually be the root of everything I’ve been experiencing my whole life. I mean, my god, the app knew me better than any medical professional ever knew me.”
As a journalist, Henterly didn’t stop there. She did more Googling and dove deep into ADHD research. Further convinced that it applied to her, she sought a doctor who could confirm the diagnosis. It took some time to find a willing specialist -- because of abuses of the stimulant medication generally prescribed to children for ADHD, many doctors are reluctant to evaluate and diagnose adults – as well as to get insurance coverage. But ultimately Henterly received the “proper diagnosis” that had eluded her for three decades.
“There was a sense of grief because it was confirmation that I’m different, which is always a struggle, and over knowing it took 30 years for this to be recognized and I could have been coping better my whole life,” she says. “But there was also gratitude, because with this diagnosis I have the tools to find solutions. And there was a huge sense of validation as well, because finally I had an answer and I could begin treating the cause of my issues and not just the manifestations of it.”
Henterly, the oldest of eight children in household that moved frequently due to her father’s job as an engineer for a battery company, was little more than a toddler when her mother first became concerned about a behaviors she was exhibiting.
“I had this habit of just idly tapping each of my fingers to my thumb, starting with my forefinger and to my pinkie and back again,” she says. “Both hands at same time while I was watching TV or telling a story or random times. My mother took me to a pediatrician suspecting OCD (obsessive compulsive disorder) but he just wrote it off as a nervous habit that I would outgrow.”
Henterly now realizes this may have been the earliest sign of her need for “stimming” or self-stimulation, a term used for the soothing, calming coping mechanisms often used by neuro-divergent people to mitigate or level their sensory input if they’re feeling over- or under-stimulated. Over the years, other signs that she might have a differently operating brain also emerged – a lack of spatial awareness (she was constantly running into things); emotional dysregulation (temper tantrums that turned to “melt downs”); a hyperfocus when reading; even a tendency to sing comments rather than say them (that one runs in the family, she says).
But because Henterly did not present with signs typically associated (especially in boys) with childhood ADHD – trouble with schoolwork, an inability to focus, disruptive behaviors – these tell tale flags flew under the radar. Instead, because she was naturally good at school, she was sent to gifted classes.
“Considering the time frame, they just saw, you’re a good student, you’re doing fine, there’s nothing wrong with you,” she says. “But for women and especially girls, a lot of times the hyperactivity part of ADHD manifests as an internal monologue. So while I may have been able to sit in my seat quietly, I was unable to sit in my head quietly. And since I thought that was normal and nobody else knew it was going on, there was no reason to intervene because it was completely invisible.”
Depression did run in Henterly’s family – she’d lost an uncle to suicide – so when she began self-harming in her early teens, that seemed the most obvious diagnosis. She began therapy and was put on an anti-depressant that allowed her to “muddle the rest of my way through high school,” but because the medication made her feel flat and emotionless, she ended up abandoning it when she went off to college at Ohio University. There she was subsequently diagnosed with anxiety as well as post-traumatic stress disorder (from an incident that occurred at school).
Henterly would go on and off anti-depressant medications throughout her college years, frustrated by side effects that ranged from anhedonia, to lack of sex drive to vertigo. As her graduation approached in 2010 – at a time when the job market for young people starting careers, especially journalists, looked exceedingly dim – the panic attacks she’d begun experiencing increased. Yet despite seeing a long string of family doctors, therapists and psychiatrists, “I never in my life had a medical professional tell me they thought I might have ADHD.”
Over the years Henterly had become adept at masking her most obvious symptoms, the ones people might see as “odd” or “weird.” She tried to curb her tendency to rock or tap her fingers. She made an effort to squelch her “stimming” behaviors (like the singing sentences) when she was around people with whom she didn’t feel “safe” and at ease. She became hyper-organized, writing endless “to do” lists in a variety of colors for a variety of reasons and obsessively ticking off each item on the list. These habits allowed her to move smoothly through the world, even earning her a reputation as smart, motivated and productive.
“There were a lot of adaptations I made for myself, which I think anyone with ADHD does, whether they know they have it or not,” she says. “But I never thought to look beyond the diagnoses I received because I had a family history of depression, so I just thought that was what my problem was. I just accepted it.”
That is, until the Covid 19 pandemic hit and Henterly’s schedule and systems were upended when she began working from home. Her challenges with executive functioning – especially the ability to initiate or stay on a task – began increasing. At the time, she initially attributed her lethargy to pandemic-induced burnout coupled with anxiety and depression.
Without impetus or drive, the home she shares with her husband of seven years began to get messier and more disorganized. Work tasks either got pushed to the side or left until the last second, causing further stress and anxiety. The “occasional rough day” began to turn into a “sit on the couch for five hours because I can’t convince myself to move even to get a drink of water” kind of day. Just finding the motivation to take a shower – all those steps! – seemed overwhelming.
“It seemed insurmountable to just do what was a relatively simple task,” she says. “Just because it was simple, doesn’t mean it was easy.”
Then came that Tik Tok assignment. And several months later the diagnosis that cast all the struggles she’d experienced throughout her life in a new light.
“It was always, ‘You’re depressed’ or ‘You’re anxious’ and let’s treat those issues,” she says. “And to be fair, mental health has come a long way in the last 10 years, so I can’t put all the blame on that. But it was a little frustrating to learn, at 32, that the thing that has been causing all my issues my whole life is something no one even mentioned to me might be a possibility.”
Henterly learned from her research that there are three types of ADHD – inattentive, hyperactive and, her own diagnosis, a combination of the two. She was eager to begin treating the root of the problems she’d experienced, rather than just medicating her symptoms, but because there is a history of addiction in her family as well, she wanted to stay away from stimulants. She is now working with a therapist specializing in neuro-divergency who is helping her taper off her anti-depressant medication (an SSRI or selective serotonin reuptake inhibitor) and replace it with one that works on the brain through the same mechanisms, but delays the uptake of norepinephrine by the synapses.
“When I say that going on that medication changed my life, it really did,” Henterly says. “We’re going to have to continue experimenting with dosages for a few more months, but I’m really looking forward to a time when I can start experiencing life the way most people do and the way I never actually have.”
In “Tik Tok Told Me I Have ADHD,” an article she recently wrote for Columbus Monthly, Henterly shares how she first recognized her symptoms were decreasing. While emptying the dishwasher of silverware, she noticed crumbs in the silverware drawer. Before, she says, that would have led her not only to pull out all the silverware and clean the entire drawer, but “uber-clean” her entire kitchen as well. Instead, she merely grabbed a paper towel, wiped out the tray, and finished her task in minutes.
“I just stood in my kitchen and cried because it never would have occurred to me before that I could just do that one little act and not deep clean the rest of the kitchen afterward,” she says. “For the first time it occurred to me what kind of possibilities would be opening up for me if I continued on this journey.”
Henterly knows a diagnosis is just the beginning. She continues to research ADHD and avail herself of new resources– like Tracy Otsuka’s podcast “ADHD for Smart Ass Women” – that will give her additional coping skills beyond medication. That includes being gentler on herself when she does have a “meltdown” (like that time she punched a hole in the bannister when she couldn’t correctly print the “Save the Date” cards for her wedding).
“Emotional regulation has always been a huge hurdle for me and as an adult there’s a lot of guilt and shame around that,” she admits. “I’m learning to have a lot more grace with it. I understand that it’s because my brain doesn’t work like other peoples’ do and not because I’m emotionally stunted or there’s something wrong with me. I’m just having a feeling that’s bigger than I can contain. So I’m very much looking forward to when I’m better regulated and I don’t have to worry about those things anymore.”
Henterly plans to continue writing about her mental health journey and her lived experience, not only in the hope that “it won’t take 30 years for someone to be diagnosed” but because she hopes to help neurotypical people better understand ADHD and be more forgiving when they encounter someone “stimming,” having an emotional outburst or being compulsive. The information and community she found through a social media platform she once disdained have convinced her of the power of sharing.
“The beauty of Tik Tok is not just the strength of the algorithm, but also the beauty of the creators -- the people who have ADHD, are on the autism spectrum or have other mental health disorders who are doing this hard labor of educating others about what it is,” Henterly says. “I owe a massive debt to those people for doing that selfless work and I want to be part of that tradition. It’s only through knowledge that we’re able to find any kind of understanding or peace.”