Fiona Edwards is 50 years old, but to this day, some of her most traumatic memories are from her elementary school classroom in the Caribbean.
As a child with an overactive imagination who struggled to stay organized and to wait her turn, Edwards had a hard time learning as her classmates did. And her principal didn’t waste any opportunity to remind her — and everyone else – that she was “an unteachable dunce,” said Edwards, who now lives in Baltimore.
“Ninety percent of the scars on my body came from school — getting spanked because teachers deemed me so stupid,” she said. “Not because I was actually stupid, but because they didn’t have the training to teach me effectively.”
It wasn’t until Edwards was studying for her bachelor’s degree in her early 30s that she finally got an explanation for why she had to work so much harder than her classmates: She had attention-deficit/hyperactivity disorder, or ADHD.
The number of adults being diagnosed with ADHD — a neurodevelopmental psychiatric disorder characterized by inattention, hyperactivity and impulsivity — is increasing rapidly in the U.S. According to a 2019 study published in the Journal of the American Medical Association, such adult diagnoses are growing roughly four times faster than they are among children.
However, there are no U.S. guidelines for diagnosing and evaluating the disorder in adults, said Dr. David Goodman, an assistant professor in psychiatry and behavioral sciences at the Johns Hopkins School of Medicine. Instead, such guidelines only exist for treating the condition in children and adolescents.
Goodman and other ADHD doctors are optimistic that will change in coming years. The American Professional Society for ADHD and Related Disorders Association — better known as APSARD — recently launched a special committee, stacked with experts and clinicians from around the world, to write the first U.S. treatment and diagnostic guidelines for adults with ADHD.
The committee has a long road ahead before the American Psychiatric Association and National Academy of Medicine consider endorsing any guidelines it proposes, said Goodman, who is treasurer of APSARD.
It took the organization four months just to vet everyone on the committee for conflicts of interest, Goodman said. Next, committee members will complete an extensive analysis of existing adult ADHD research before they eventually draft a manuscript of selected assessments and treatments. Then they will present that draft for public comment, and incorporate any feedback into the guidelines before submitting them for peer review and publication.
“So has your head exploded now that you’ve realized this process?” Goodman said during a talk at the annual Children and Adults with ADHD conference in Baltimore in November.
Despite the complicated path forward, Goodman hopes the guidelines will be a sea change for diagnosing and treating adults with ADHD.
He believes they will encourage educational institutions to incorporate more information about adult ADHD into their curricula, to better equip clinicians and doctors to recognize and manage the condition. He also hopes the guidelines will influence insurance company decisions about whether to cover the treatment and evaluation of adults for the disorder, and make it easier for patients to access medications.
And, Goodman said, having clinical practice guidelines for adult ADHD will ensure a more uniform diagnostic and treatment approach across the country — the importance of which the pandemic made clear.
While some studies suggest that ADHD remains underdiagnosed and undertreated among adults, the prescription of stimulants — a kind of drug used to treat the disorder — increased by 45.5% in the country between 2012 to 2021, according to data from the U.S. Food and Drug Administration and the Drug Enforcement Administration. Prescriptions for stimulants jumped by more than 10% in some age groups between 2020 and 2021, according to data from the U.S. Centers for Disease Control and Prevention.
The boom of the telemedicine industry during the pandemic greatly improved access to mental health care. But Goodman worries it also led to some adults being inaccurately diagnosed with ADHD and mistakenly being prescribed stimulants like Adderall — a medication that has been in short supply for more than a year.
If a person without ADHD is prescribed a stimulant, they’ll likely tell their doctor that their mood, cognition and energy levels have all improved, said Dr. Max Wiznitzer, who serves on the board of directors for Children and Adults with ADHD, or CHADD.
“In other words, if you drink your cup of coffee, you begin to focus better for a short time,” he said.
“But for this population, they’re not at a normal level,” he said of those with ADHD. “They’re under-performing regarding attention. And what the intervention does is it brings them closer to the mean level that everyone else in the world is at, and that makes them more functional as a consequence.”
CHADD is working together with APSARD to ensure that its guidelines can be adapted to the needs of different medical and mental health specialists and patient populations, such as those with co-occurring diagnoses and conditions, Wiznitzer said during the November conference.
The consequences for adults who don’t have their ADHD diagnosed or treated can be dire, said Dr. Jill RachBeisel, psychiatry chief for the University of Maryland Medical Center and psychiatry chair for the University of Maryland School of Medicine.
They’re more likely to develop substance use disorders, experience unemployment, drop out of college and struggle with self-esteem, RachBeisel said. And, she added, they’re likely to have a hard time managing friendships and relationships, which can lead to loneliness and isolation.
She recalled how a teenager reacted when she started taking medication for her ADHD for the first time.
“She said to her mother, ‘This is the first time I have been able to have a thought and think about one topic without having 10 other topics bombard my thinking,’” she said. “I think that’s a nice visual of what it’s like to live with an ADHD brain.”
Kristine Streett, a 34-year-old living in White Marsh, nearly died before her ADHD was finally diagnosed. About six years ago, while she was going through a divorce and struggling with alcohol abuse, she tried to take her own life. It was an impulsive, out-of-character decision, and when she woke up in the hospital, Streett said, she knew she’d made a big mistake. In the weeks that followed, she was correctly diagnosed with ADHD, post-traumatic stress disorder and major depression — after being misdiagnosed as a teenager with schizophrenia.
The last few years have been hard. Streett’s mother died in 2019 and she was diagnosed with melanoma shortly after that. But she’s found a medication that works for her and created a system for remembering to take it. She does yoga and meditates every day. And she makes an ever-growing pile of to-do lists to keep herself on track, all while maintaining a sense of normalcy for her two small children, whom she co-parents with her ex-husband.
Streett still sees her ADHD diagnosis as a curse in some ways, but she’s starting to recognize how it also can be a blessing. She’s a champion multitasker, who wears an impossible number of hats — from a singer in a band to hairdresser to Etsy small business owner to volunteer with National Alliance on Mental Illness Metro Baltimore’s HelpLine.
And after nearly two decades of enrolling, then dropping out of college, Streett is about a semester away from graduating with a degree in criminal justice and police science from the Community College of Baltimore County in Essex. It’s the best she has ever done in school, she said.
“Nobody’s perfect and it’s really difficult — it is still a challenge every day — but it’s something that you have to work towards to make it work for you,” she said.
Edwards also has found ways that her ADHD diagnosis can benefit her career. She works in the human resources department of a real estate company in Baltimore, where she advocates for the inclusion of neurodivergent people in the workplace.
As for her elementary school principal? She has him to thank for the title of her dissertation, which she defended in November to earn a doctorate in human rights education, with a focus on disability justice and inclusion: “The Re-education of the Unteachable Dunce Student.”
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