As ADHD content explodes during the Covid pandemic, countless people seek care for the first time, including many Black women. But new telehealth rules also open the door for potential misdiagnosis. More on this story:ADHD symptoms in womenHow to handle a misdiagnosisA day in Danielle’s lifeFor a transcript and more resources, visit the episode page on Understood. Understood.org is a nonprofit organization dedicated to empowering people with learning and thinking differences, like ADHD and dyslexia. If you want to help us continue this work, donate at understood.org/give
Chapter 1: How did social media contribute to the rise of ADHD awareness during the pandemic?
Believe it or not, I wasn't on social media during the height of the pandemic. Instagram got boring. No one was going anywhere or doing anything. There was nothing to be mindlessly voyeuristic about. I deleted my accounts and wasn't really on from March 2020 to November 2021, except a few days here and there. I never join TikTok because I'm afraid I'll get addicted.
The few times I've looked at it, I've ended up scrolling through snowboarding videos for hours. So, no, I wasn't on social media during the pandemic. What'd I miss? The birth of ADHD social media, apparently. By the time I tuned in, in early 2022, there were millions of posts with the hashtag ADHD. They had more than 11 billion views on TikTok. They filled my entire Instagram discovery page.
For women who were on social media during the pandemic, these posts sparked an explosion of interest in ADHD. Terry Matlin, author of The Queen of Distraction, has been treating women with ADHD since the late 90s. She told me she's never received such a sudden flood of emails from women looking for treatment.
I think that as women, we're stuck at home with... a lot of them with young children or older children, and they had to not only figure out how to work from home, helping their kids with school, being, you know, isolated and being expected to be able to take on all of this stuff, and they were just climbing the walls. Women were just climbing the walls.
I got a lot of emails and these gals were really, really frustrated and their self-esteem. It was, why can't I do this? I'm not used to being home all day. I have no structure. I have no outside people telling me, you know, this is due now. What are you doing? You're going to, you know. They got overwhelmed. It was really heartbreaking. It was too much. So they reached out for help.
Some said they'd learned about ADHD on social media, and now they wanted to talk to their doctors about it. They wanted help navigating these conversations.
They do have access to more information. So they have an idea of, okay, I think this is related to my ADHD, but I don't know what to do. I was diagnosed with depression, I think it was ADHD. How do I tell them that it could be ADHD?
Terry took this as a sign of progress. For decades, medical schools failed to educate psychiatrists and other doctors on the ways ADHD shows up in everyday life, especially for women. The lack of education and training led to years of misdiagnosis. She was happy to see that women were now more informed. She also worried about that information. In 2021, she joined TikTok to see if she could help.
I'm trying to disseminate appropriate, valid information and not, oh, I lost my keys. I have ADHD.
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Chapter 2: What challenges did women face during the pandemic that led to increased ADHD diagnosis?
We like to talk about the algorithm, like it's some omniscient, even clairvoyant supermind. Probably because none of us know how it works. But it's not. It's more like some complex combination of statistics, probability, and soylent-fueled software engineering. The important point here is that it worked.
The algorithm started directing Parker to more and more accounts by Black women, specific and useful accounts like ADHD While Black, which she now follows. I didn't get these recommendations. The algorithm seems to know I'm white. But in 2022, Parker's feed spoke directly to her experience. These accounts offered helpful ways to manage her ADHD and encouragement.
It's one of the things where it's like, you have to, like, they're like, oh, well, Black women have to be hypervigilant because, like, we can't,
because you have the perceptions that the world have about us to get defensive, to not be good at your job, to not be on point is immediately a defect and already a ding against your character amongst what other dings happen just because of like the dual sides of oppression as being black and a woman. So to have ADHD on top of that and like, oh, well, why, why, Why did you not meet this deadline?
Why can't you answer these questions right now? All of these things you kind of have to overcompensate. I know that growing up, aside from having ADHD, I also had a social anxiety disorder. I was really shy and scared to talk to people. And being thrust into New York City at, like, 21, having to, like, just function and put yourself out there is a really scary thing.
And having all these things while being Black is, like, an added layer of neuroses. But like having women that I started getting on my For You page to be like, yeah, I also... Parker interrupted herself as she was saying this.
She said that in one post, a woman cited a statistic about other Black women with ADHD.
I forgot what the statistic was, but like the number of Black women in their 30s during the pandemic, they were... They had ADHD and learning that, like, they've had it their whole lives. And because you were functioning and because no one is looking into Black girls because they're doing, like, there's a lack of interest. And, you know, as long as they're keeping the status quo, they'll be fine.
In these posts, she heard women describing why young Black girls are rarely diagnosed with ADHD. Or at least they were rarely diagnosed. Data published in the Journal of the American Medical Association shows that the largest increase in diagnosis from 2000 to 2010 happened among Black girls. But that statistic is tricky.
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