Why Is It Still So Hard To Diagnose Adult ADHD?

Growing up, Jia Sung struggled in class. Her reports card contained notes like “intelligent but doesn’t apply herself” or “has a really hard time focusing,” she said. Those early signs of ADHD were dismissed as laziness or lack of motivation.

Then, when Sung was in her late 20s, her friend was diagnosed with ADHD and suggested she be screened, too.

“Part of me was a little resistant to it. The things that I was told were associated with ADHD, I had associated with character flaws,” Sung said. “It took me a couple years of sitting with this possibility to act on it and seek diagnosis.”

Now 31, Sung, a New York-based artist, has spent the past year adjusting to her new diagnosis and navigating management options.

“This is the first time I’ve considered myself through the framework of neurodivergence, and that has been really liberating,” she said. “I can go from thinking of myself as an extremely dysfunctional neurotypical person who just sucks at being neurotypical to like, ‘Oh, right. There’s a way to make sense of how I am, and there are ways to help me cope better.’”

ADHD is a developmental disorder characterized by long-lasting symptoms of inattention, hyperactivity, and impulsivity starting in childhood. People with ADHD may refer to themselves as neurodivergent because they think or function differently than most people.

For decades, scientists thought ADHD only affected children, most of whom would outgrow it. Clinicians now know that the condition often continues into adulthood. Some cases can fly under the radar for years in adults who were never appropriately evaluated or treated when they were kids.

By some estimates, as many as 6.8% of adults worldwide have ADHD, making it the second most common neuropsychiatric disorder in adults after depressive disorders.

While the perception of adult ADHD has changed dramatically in recent years, clinical practice in the U.S. hasn’t caught up.

Some 40 countries have adult ADHD diagnostic guidelines, but the U.S. does not. Most health providers receive no formal training on diagnosing and treating adult ADHD, and there are no clinical guidelines to help them.  

“Imagine going to your family doctor who says, ‘I’m pretty good at helping with cardiac problems and hypertension, but diabetes? I didn’t get that in med school, so I can’t help you.’ That’s an equivalence to what we’re looking at here,” said Russell Ramsay, PhD, a psychologist who co-founded the Adult ADHD Treatment and Research Program at the University of Pennsylvania.

Now, a coalition of ADHD experts is on the verge of publishing guidelines to help clinicians distinguish ADHD from other common psychiatric conditions in adults and ensure patients the right treatment.

Why So Many Adult ADHD Cases Go Undiagnosed

Diagnosing ADHD in adults can be challenging. 

For one, it wasn’t considered a real diagnosis until recently. When ADHD first appeared in the second edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-II) in 1968, the definition said the disorder “usually diminishes in adolescence.” It wasn’t until the DSM-IV was published in 1994 that there was mention of ADHD extending into adulthood. Even then, the criteria were based on trials that were limited to school-aged children.

Because ADHD is a neurodevelopmental disorder, the current DSM says symptoms must be apparent by age 12. But Ramsay said that requirement may miss some adolescents. There’s evidence that ADHD symptoms may not emerge in some people until around age 16, after they’ve gone through puberty and start to have more responsibility in their lives.

When clinicians evaluate an adult for ADHD, they may ask to speak to a patient’s family members, spouse, or friends to assess if symptoms were apparent in childhood. The diagnosis process also typically involves interviews to understand a patient’s symptoms, a behavior rating scale, and a physical assessment.

The way ADHD symptoms appear may change as an individual matures and their behaviors become ingrained. For instance, someone who was often easily distracted as a child may find it difficult to complete tasks that require sustained mental effort in adulthood. Children who were hyperactive in school may become restless and easily bored in work meetings as adults.

Complicating matters further, there are many adult psychiatric conditions with symptoms that overlap with ADHD, Peter Jensen, MD, an ADHD specialist who is helping shape the guidelines said during a webinar organized by Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD).

People with anxiety, substance use disorder, and bipolar disorder often show signs of inattentiveness and difficulty completing tasks–core symptoms of ADHD. Sometimes, mental health professionals get distracted by those other conditions, Jensen said.

“There’s a lot of area for misunderstanding, even among healthcare providers. They might say, ‘How could you have ADHD? You graduated from law school.’ They don’t totally get it,” Jensen said.

That’s where the guidelines come in. A committee formed by the American Professional Society of ADHD and Related Disorders (APSARD) expects to publish a draft version for public comment by the end of the year.

The final guidelines for treating adults with ADHD will include recommendations for which treatments to consider first, how to best prescribe medications, and how to monitor for side effects of those drugs, said Lenard Adler, MD, director for the Adult ADHD Program at New York University and an executive committee member for the APSARD guidelines.

“[The guidelines will] provide guardrails for how to establish a diagnosis and treatment plan for a patient,” Adler said. “Our hope is that these are going to be used by all clinicians who are treating patients with adult ADHD. Specialists like me cannot treat all of the individuals with adult ADHD.”

It’s important to get those guidelines right. Studies show that untreated ADHD can lead to a shorter life span and early death due to substance use, obesity, and heart disease. The guidelines could also help insurance companies to appropriately cover mental health care and support advocacy efforts by ADHD organizations for better access to medication. 

A ‘Watershed Moment’ for Adult ADHD

Luke Solomon, 33, suspected he had ADHD a decade before he was diagnosed. Throughout middle school, he had a hard time focusing and often daydreamed more than other kids. When Solomon asked his doctor if ADHD might explain his inattentiveness, his doctor brushed it off, he said.

At the time, there was “a lot of stigma around ADHD,” he added. “Everybody was diagnosing their kids with it. Doctors were going crazy, giving out Ritalin, or so it seemed.”

Solomon, who lives in New York City, recalled a 2000 episode of “South Park” depicted kids who were prescribed ADHD medications, putting them in zombie-like trances.

In his fifth year of college, Solomon was assigned a class project about ADHD medication. While researching the diagnostic criteria, he realized they described him “to a tee.” He then set up a visit with a psychiatrist.

He left that appointment with an Adderall prescription and took his first dose before a two-and-a-half-hour physics lecture.

“I remember calling my dad after that lecture, having five pages of notes, and I said, ‘Taking this medication is as eye-opening as the first time that I put on glasses.’ It was that profound,” Solomon said.

Over the following decade, Solomon said he became more motivated than he had been in adolescence and he found new ways to cope. He attaches AirTags to important items he’s prone to losing and handles some of the physical household chores while his partner ensures the bills get paid.

Adler said many adults seek a diagnosis when they go through a major life change that requires them to take on more responsibility or adjust to a new environment, such as leaving home for college, getting married, starting a family, or earning a big promotion at work. Sometimes, parents recognize signs of ADHD in themselves when they take their child to be evaluated for the condition.

“ADHD symptoms don’t occur in a vacuum. They occur in the context of the individual’s life. And sometimes the symptoms may have been there but are brought to the fore by a change in the demands in the individual’s life,” Adler said.

For many people, the COVID-19 pandemic forced a life change. Lockdowns interrupted work and social routines and kept many people at home. Some students who had always managed to pass their classes started slipping without the routine of going to school. Some adults who found themselves working at home struggled to remain productive while surrounded by family members and distractions.

“The pandemic was a watershed moment,” Ramsay said.

At the same time, the pandemic required mental health providers to switch to telemedicine, which often meant that they could provide services to people out of state. With the increased demand for mental health support overall, ADHD specialists became swamped with clients seeking support.

Telehealth companies filled the gap. Some online mental health companies, like Cerebral and Done, came under fire for prescribing addictive stimulant medications to patients after 30-minute virtual visits. A 2022 Wall Street Journal article reported that the proliferation of telehealth companies and inappropriate prescribing partially motivated APSARD’s decision to draft guidelines.

Unreliable ADHD Content Proliferates on Social Media

During the pandemic, Americans spent far more time on social media platforms like TikTok and Instagram. In the years since, there’s been an influx of posts attempting to demystify ADHD and other mental health conditions. 

A 2022 study found that 79% of the top 100 TikTok videos about ADHD were either misleading or relied on personal experience. Only 11% of the videos were uploaded by healthcare providers. Videos about first-person experiences got the most likes and views.

Ramsay said that personal story videos tend to be some of the least reliable content. But they’re attractive to people, he said, because they’re affirming. “It’s a connection with somebody, albeit virtually.”

Even if many social media videos are non-credible, Ramsay said the increased awareness about ADHD is probably a “net positive”—when people resonate with certain ADHD symptoms or experiences shared online, they may choose to take an online ADHD screening test.

Those tests, Ramsay said, give a lot of false positives. But they also tend to identify many people who do have ADHD and never before recognized it. That could lead some people to ask a clinician for a more rigorous diagnostic evaluation. If nothing else, that conversation could help patients identify behaviors they want to change anda therapy or other treatments to achieve that.

“Some of the evaluations I’m most proud of are times when I’ve been able to sit with somebody and tell them, ‘Here’s why it’s not ADHD, but here’s what can be helpful,’” Ramsay said.

Why Adult ADHD Guidelines Matter

ADHD has long been understood as a disorder of inattention and hyperactivity. But a growing consensus among researchers say that the condition is really a disorder of executive function, which describes skills like self-control, planning, and organizing. 

Ramsay said the diagnostic criteria as it exists now “is not wrong, but it’s incomplete.” Studies show that emotional dysregulation, a symptom that is missing in the DSM for ADHD, may be as major a factor in the condition as impulsivity, inattention, and hyperactivity.

Making room for more symptoms in the DSM and diagnostic guidelines could improve outcomes for women, who often present differently than men. While boys tend to display hyperactivity and impulsivity, girls are more likely to display symptoms of depression and anxiety. Girls who express feelings of sadness and emotional distress can easily be misdiagnosed, leaving them without appropriate support during their formative years.

One girl is diagnosed with ADHD for every four boys. In adulthood, the ratio evens out to one to one.

“I’ve processed a lot of grief around the lack of support that I belatedly realized I had as a troubled student, as a really depressed teenager. There’s a backlog of grief around that,” Sung said.

A late-in-life diagnosis can conjure mixed emotions about one’s sense of identity and relationships. Both Sung and Solomon said their parents expressed regret at having missed the signs of ADHD when they were kids.

Increased public awareness about ADHD, especially among women and minoritized groups, is causing more adults to seek a diagnosis than ever before. As the stigma around ADHD continues to wane and healthcare providers become better equipped to evaluate and treat the condition, that trend may continue. 

“I feel an incredible compassion for the other people who are experiencing late diagnosis and the emotions that can bring up,” Sung said. “It can be scary to feel like your understanding of your identity is shifting when it should already be set in adulthood. But there’s also something nice about that fluidity and the different lenses of understanding of yourself.”