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The Guardian - US
The Guardian - US
Politics
Hannah Harris Green

When it comes to adult ADHD, the US medical system is falling behind

illustration of silhouette of head with adhd letters in the middle
Demand for adult ADHD evaluations has increased significantly since the Covid-19 pandemic. Photograph: Andriy Popov/Alamy

Sophia Rath, a psychologist in Seattle, has been dealing with more demand than she can handle for a particular service – adult ADHD evaluations. Wait times for these assessments are six months longer than they used to be at PEAK Psychological Wellness, where she works. She’s hired another person to try and fill the gap, but it wasn’t easy: “Testing psychologists are a little bit like unicorns, honestly.” Mental health professionals with the skills and training to give full neurological evaluations for adult ADHD are few and far between.

Since the pandemic, practitioners around the country have found themselves in the same position as Rath – inundated with more requests than they can handle for adult ADHD evaluations. Of the more than 30 practices the Guardian contacted, the dozen who replied confirmed that demand doubled or tripled in the last three years. They confirmed that Covid-19 created a new awareness and conversation around adult ADHD – while simultaneously blocking the resources needed to treat it.

“Covid has really clogged up multiple states’ licensing timelines,” said Rath.

Jared DeFife, a psychologist who conducts ADHD evaluations at his private practice in Atlanta, said the lack of knowledge about adult ADHD was already a problem before the pandemic.

“The current struggle is not just due to increased demand, but also due to the paucity of neurodivergent knowledgeable healthcare practitioners available in the first place,” he said, adding that the majority of adults with ADHD have historically gone undiagnosed and untreated – as many as 80% until recently. As more of those adults are beginning to seek treatment, the medical system is unprepared to serve them.

TikTok videos with titles like “5 signs you have ADHD” and “5 things ADHDers hate,” are driving a lot of interest around adult ADHD. They list symptoms like daydreaming, swaying to avoid things while walking or picking skin for hours. Some videos have disclaimers, informing viewers that they should not replace medical advice, some are from users who list medical credentials, or are from people who have been diagnosed – but it’s not clear how credible each video is.

Rath says that TikTok “drives at least 50% of our current requests for intakes right now”, and her feelings about this are complicated.

“On one hand, I think it’s really wonderful that we’ve got more information out there that can help people better understand themselves,” she said. “What is scary is that there are a lot of non-credible sources out there that are putting out information about these medical conditions.”

According to one study in the Canadian Journal of Psychiatry, about half of the most popular TikTok videos about ADHD are “misleading” and the other half are “useful”. Some of the videos in the study made false claims about ADHD, including that people with ADHD “lack object permanence”.

man in a room with technical equipment
“The current struggle is … also due to the paucity of neurodivergent knowledgeable healthcare practitioners available in the first place,” said Jared DeFife. Photograph: Courtesy Jared DeFife

Such videos are leading some who have unknowingly struggled with ADHD for years to seek treatment while also attracting curiosity from people who have more typical focus issues. Maggie Sibley, a psychiatrist at the University of Washington who specializes in diagnosing and treating ADHD, said the condition is relatable even to people who don’t necessarily have it. “The average adult has two or three symptoms of ADHD,” she says. The DSM-5 states that adults should have at least five ADHD symptoms to get a diagnosis, and those symptoms must cause “significant impairment” in at least two settings (like work and at home, for example).

Rath is frustrated when patients come in because they’ve seen some TikTok videos and they’re hoping to “understand themselves better”, which she said is “not really medically necessary”. Some of these patients complain that Rath is “invalidating” their experience when they don’t get the diagnosis they expect. Rath fears that such patients are putting pressure on an already overloaded medical system, and that people who are experiencing severe impairments aren’t getting the care they need.

The uptick of ADHD content on social media has also raised concerns about over-diagnosis. Sibley said people falsely claim ADHD to seek medication, but there are still many people who are undiagnosed – including people of color and especially women, whose symptoms present differently.

“They deserve to be able to have all of the pieces fit together for them, just like the people who are more obvious,” she said.

Some patients getting ADHD evaluations because of TikTok are even learning that their focus issues were caused by something else. Elizabeth Oh, a 30-year-old political organizer in Queens, New York, decided to get evaluated when her sister showed her videos that resonated with her.

“I can’t sit still for more than 30 seconds before another idea or task or thought pops into my mind,” she said.

She went in for a neurological evaluation that showed she didn’t have ADHD. Her psychiatrist concluded that her focus issues stemmed from past PTSD.

“We sort of surmised that my work being anxiety provoking all the time, I was in fight or flight mode. It wasn’t that I had ADHD, I was just reacting and bouncing from task to task because my body was activated during political organizing,” said Oh, who is now working to reduce her stress level.

A faster alternative

Some patients are choosing to forgo the waitlists and opt for on-demand ADHD evaluations from tele-health startups that might not be equipped to handle complex cases like Oh’s. Some startups have received criticism for their aggressive and misleading advertising campaigns. For example, Cerebral – a tele-health company that offers quick on-demand evaluations for ADHD via a phone app – advertised on TikTok by suggesting that ADHD treatment could help people lose weight. The videos featured people surrounded by junk food and read: “Those who live by impulse, eat by impulse.” While ADHD has been linked to an increased risk for obesity, targeting insecurities about body image rather than core ADHD symptoms could lead people to seek treatment for the wrong reasons.

Startups like Cerebral, as well as Done and Circle Medical, are well positioned to fill the gaps in the traditional medical system. These companies offer evaluations in as little as 30min with no wait lists and prescribe medication, sometimes including controlled stimulant medications like Adderall and Ritalin. Meanwhile, thorough psychological testing for ADHD can take nearly a full day. Rath said her ADHD evaluation process typically involves a 2-hour intake interview that will cover the patient’s full history, an interview with someone close to the patient, 4 to 7 hours of neuropsychological testing and a feedback session. She likens the time and specialization that goes into these evaluations to the “mental health equivalent of surgery”.

a pill bottle with a pill on it
Startups such as Cerebral can also prescribe medicine such as Adderall and Ritalin. Meanwhile, a thorough evaluation for ADHD can take a whole day. Photograph: Bill Truran/Alamy

An unprepared medical system

Sibley suggests these specialized evaluators are competing with startup companies that offer 30min evaluations, in part, because there are no guidelines in the US about how to diagnose adult ADHD. By contrast, Canada, Australia and the European Union have established guidelines. Sibley herself is working with the American Professional Society of ADHD and Related Disorders to correct this and create clear guidance in the US.

Many healthcare providers are diagnosing (or not diagnosing) adult ADHD without specific training or expertise on the subject. DeFife said the lack of structure and support around ADHD permeates the US medical system. When asked if he was worried about misinformation about ADHD on TikTok, he said, “The greatest source of misinformation actually comes from providers themselves ... because there’s still so little in the standard education of physicians and mental health practitioners on how to accurately assess and diagnose and how ADHD presents in adults.” Ninety-three percent of psychiatric residents receive no training in adult ADHD, and there are no questions about adult ADHD on board certification exams, according to a 2022 report.

Medical startups like Cerebral have changed the way ADHD diagnosis works in a number of ways. They took advantage of an emergency provision established during the pandemic that allows healthcare providers to prescribe controlled substances via tele-health. And unlike traditional providers, they advertise directly to consumers by offering a specific diagnosis. They can even use algorithms to target users who have already shown curiosity about ADHD in their social media searches.

Even before these startups became pervasive, providers without specific training in ADHD – or even mental health – have been able to diagnose the condition without clear guidelines. You don’t need to see a psychiatrist to get an ADHD diagnosis – licensed nurse practitioners and primary care doctors are permitted to diagnose and prescribe medication for the condition. Rath said she’s heard about patients who are “getting diagnosed or prescribed after a 15-min conversation about current symptoms with no questions about childhood development and how things looked in the past”. DSM guidelines say that for an adult to be diagnosed with ADHD, some symptoms must have appeared before they were 12.

Whether you’re getting diagnosed through a medical startup or at a doctor’s office, a missed ADHD diagnosis or a misdiagnosis can have a profound negative impact on someone’s life. Mysha, a 26-year-old artist in Colorado, said they were misdiagnosed with ADHD at 15. They tried stimulant medication for years.

“It gave me enough energy to get out of bed in the morning, but it never helped me focus,” they said. Their therapist thinks they have autism and PTSD, not ADHD. Mysha suspects they were misdiagnosed because they are Black.

“I don’t think that doctors in America spend a lot of time and care with their patients in general and when we are marginalized, that is even more common,” they said. If they’d received the correct diagnosis, they said their “understanding of myself and patience with myself would have been greater from a younger age. I could have avoided so much of the burnout that I experienced in my early 20s.”

In limbo

Patients might have to wait months for an appointment with someone trained in ADHD evaluations. Others simply can’t afford these specialized services, which can cost hundreds or even thousands of dollars without insurance. Sibley recommends that patients who are unable to get an evaluation for ADHD, either because they are on a waitlist or because they can’t afford it, look into cognitive behavioral therapy, which can be helpful regardless of what diagnosis a patient might end up giving.

Sibley said that while there might be rare cases where a fast evaluation is enough, most adults with ADHD have other overlapping conditions which are also important to identify. Whether a quick diagnosis is ultimately good or bad all depends on how the patient is responding to the treatment.

“If a person feels like an ADHD diagnosis is a fit for them and they’re responding well to the treatment and they’re feeling like their quality of life has improved, that’s not really the place where this is concerning,” Sibley said, adding that she’s more concerned about patients who have symptoms that mimic ADHD but do not actually have ADHD.

Depression and PTSD can also cause problems with focus and memory, but the stimulant medications that are most commonly prescribed for ADHD can actually make them worse.

“That’s the biggest issue,” said Sibley. “You could miss something that’s actually an acutely worsening condition that needs immediate attention, because it seems like ADHD.”

• This article was amended on 10 July 2023 to correct the name of PEAK Psychological Wellness.

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