Activists with ADHD push for a world more friendly to those with the disorder

Jessica McCabe crashed and burned at 30, when she got divorced, dropped out of community college, and moved in with her mother.

Eric Tivers had 21 jobs before age 21.

Both have been diagnosed with attention-deficit/hyperactivity disorder, and both today are entrepreneurs who wear their diagnoses — and rare resilience — on their sleeves. With YouTube videos, podcasts and tweets, they have built online communities aimed at ending the shame that so often makes having ADHD so much harder.

Now they are going even further, asking: Why not demand more than mere compassion? Why not seek deeper changes to create a more ADHD-friendly world?

“I’ve spent the last five or six years trying to understand how my brain works so that I could conform, but now I’m starting to evolve,” says McCabe, 38, whose chipper, NASCAR-speed delivery has garnered 742,000 subscribers — and counting — to her YouTube channel, How to ADHD. “I think we no longer have to accept that we live in a world that is not built for our brains.”

With Tivers, she is planning a virtual summit on the topic for next May. As a first step, with the help of Canadian cognitive scientist Deirdre Kelly, she says she'll soon release new guidelines to assess products and services for their ADHD friendliness. Computer programs that help restless users meditate and a chair that accommodates a variety of seated positions are high on the list to promote, while error-prone apps or devices will be flagged. Kelly also envisions redesigning refrigerator vegetable drawers, so that the most nutritious food will no longer be out of sight and mind.

In the last two decades, the world has become much kinder to the estimated 6.1 million children and approximately 10 million adults with ADHD, whose hallmark symptoms are distraction, forgetfulness and impulsivity.

Social media has made all the difference.

It was in 2001, after all — three years before Facebook — that the influential psychiatrist and author Peter Breggin told a PBS interviewer that psychiatrists “pandered” to parents’ guilt by telling them their children had a “brain disease.” In 2005 — one year before Twitter — Tom Cruise, on the Today Show, branded Ritalin, the brand name for methylphenidate, and a front-line ADHD treatment, a “street drug.”

Since then, however, people with ADHD have had all sorts of new ways to own and tell their stories, encouraged by viral transmission of confessions from brave celebrities — such as Olympic athletes Michael Phelps and Simone Biles — and enterprising artists such as McCabe and the TikTok cartoonist Dani Donovan. Reddit’s ADHD page has more than a million members.

The emotional glue connecting the new communities is frank admissions of vulnerability, failure and mistakes — failure and mistakes being the leitmotif of life with ADHD.

Tivers, a clinical social worker, ADHD coach, and host of the ADHD reWired weekly podcast, says talking about his own failures and recoveries helps his listeners realize “how harsh they often are with themselves.”

McCabe and Tivers take bold aim at the continuing stigma surrounding the ADHD diagnosis, and, in particular, the stimulant medications most commonly used to treat the disorder. Some justified concern about over-prescription and abuse of the medications contribute to the unusual skepticism, including books, published as recently as 2016, with such titles as ADHD Does Not Exist, and A Disease Called Childhood. But the net effect is discriminatory and harmful, ADHD advocates say.

"You don't see this nowadays with depression," says Brazilian psychiatrist Luis Rohde, a past president of the World Federation of ADHD. "Nobody disputes that depression is a real disorder."

To be sure, not everyone diagnosed with ADHD needs or benefits from stimulants. For some, such coping methods as regular exercise, behavioral therapy, and environmental supports such as flexible work and tolerant friends and relatives suffice. Yet scientists have found that prescription medications can reduce ADHD symptoms in as many as 80% of children who have been diagnosed, which, barring enormous and improbable changes in society, makes them lifesavers for many struggling kids and their families.

Judging from the research, the average impact of untreated ADHD may well outweigh the medications' most common side-effects, including problems with sleep and appetite. Repeated studies of people with the disorder have found an increased risk of suicide, particularly for women, while people with ADHD are also more likely to suffer car accidents, joblessness, academic failure and substance abuse.

"People just don't think ADHD is real or deserving of treatment, whereas with other conditions, like cancer, we know there's a possibility of side effects from medications but we take the risk because we also understand there are consequences to not treating it," McCabe says.

Diagnosed and prescribed Ritalin at age 12, McCabe, in a 2017 video, thanked her mother, a special-education teacher who died last year, for having "drugged me," despite the judgment she faced.

“Suddenly, it didn’t feel like I had a 30-pound weight attached to my head while trying to run a marathon,” she recalls.

McCabe says that her advocacy has drawn interest from pharmaceutical firms but that she has turned down offers of financial partnerships, explaining: "I need to be unbiased, because I'm there to support people."

She nevertheless sometimes gets trolled. Once, she said, someone posted a picture of her on Twitter, with the word "evil" over her face.

Ritalin didn't solve all her problems. She was still taking medication when she dropped out of school and got divorced. "The impairments are still there," she says. "It wasn't until I started to figure out how my brain works that I started to get somewhere, and was able to let go of a lot of the shame."

She resolved to learn all she could about ADHD. She made her first video in January 2016 and now has a research team of her own. She starts every episode with a merry, “Hello, Brains” — a greeting that also appears on her merchandise, including T-shirts, pillows and coffee mugs. Another revenue stream is her 3,223 subscribers on Patreon, who deliver a monthly income of more than $16,000, McCabe’s spokeswoman Linnea Toney says. It’s noteworthy success for someone who has built a career in part on confessing to failures.

As McCabe likes to explain, making life easier for people with ADHD, or other marginalized folk, could benefit many others. This is a tenet of the modern concept of universal design, of which a classic example is curb cuts that allow people not only in wheelchairs but also pushing strollers or luggage on wheels to navigate sidewalks with ease.

Sometimes this also happens in reverse, when products designed for mass consumption end up being particularly helpful for people with impairments. Consider the iPad app that finds your phone and the beeping gizmo that tracks down your keys. Some new cars chirp if you hesitate after the traffic light changes to green. All are disproportionately useful for people with ADHD.

As their discussions continue leading up to their ADHD-friendly summit, Tivers says he'd like to see new workplace rules, including limits on "the whole open-office-space plan," which he says is a "nightmare" for people who are easily overstimulated.

He also hopes for changes in the Controlled Substances Act, which deems ADHD stimulants dangerous due to their potential for abuse. That means prescriptions are written for a limited time, requiring frequent check-ins with a doctor. Stimulant use doubled between 2006 and 2016, in part due to misuse and diversion of the drugs, but Tivers argues that the restrictions pose an unfair challenge to those with ADHD, in that “we need our medication to get our medication.”

McCabe's followers on Twitter have chimed in with their own suggestions, such as:

"Written instructions/training when starting a job that take you step by step."

"If everyone could just chill out about time."

And most poignantly: “Simply acknowledging that we’re not making up all of this would be enough as a first step.”