Just before Katie Marsh dropped out of college, she began to worry that she might have attention-deficit/hyperactivity disorder.
“Boredom was like a burning sensation inside me,” said Marsh, who is now 30 and lives in Portland, Oregon. “I barely went to class. And when I did, I felt like I had a lot of pent-up energy. Like I have to move all the time.
So she requested an ADHD evaluation — but the results, she was surprised to learn, were inconclusive. She never returned to school. And it wasn’t until she sought help again four years later that she was diagnosed with an ADHD specialist.
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“It was quite frustrating,” she said.
ADHD is one of the most common psychiatric disorders in adults. Yet many health care providers have spotty training on how to assess it, and there are no clinical practice guidelines in the United States for diagnosing and treating patients beyond childhood .
Without clear rules, some providers, although well-intentioned, are “just making it up as they go along,” said Dr. David W. Goodman, assistant professor of psychiatry and behavioral sciences at Johns University School of Medicine. Hopkins.
This lack of clarity leaves providers and adult patients in a bind.
“We desperately need something to guide the field,” said Dr. Wendi Waits, a psychiatrist at Talkiatry, an online mental health company. “When everyone practices differently, it’s hard to know what the best approach is.”
Can ADHD symptoms appear in adulthood?
ADHD is defined as a neurodevelopmental disorder that begins in childhood and is typically characterized by inattention, disorganization, hyperactivity, and impulsivity. Patients are generally classified into three types: hyperactive and impulsive, inattentive, or a combination of both.
The latest data suggests that approximately 11% of children ages 5 to 17 in the United States have been diagnosed with ADHD. And it is estimated that around 4% of adults suffer from this disease. But just two decades ago, most mental health providers “didn’t really believe in adult ADHD,” Goodman said.
Today, for the most part, this is no longer the case. And during the pandemic, prescriptions for stimulants, primarily used to treat ADHD, “increased sharply,” particularly among young adults and women, according to a study published in JAMA Psychiatry in January.
When diagnosing the illness, providers rely on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the American Psychiatric Association’s official manual of mental disorders, which contains a somewhat arbitrary requirement: in order to meet the Diagnostic criteria for ADHD, significant symptoms, such as persistent forgetfulness and speaking out of turn, should be present in at least two contexts by age 12.
But sometimes older patients don’t remember childhood symptoms or report that the symptoms were mild.
Judy Sandler, 62, who lives in Lincolnville, Maine, was only diagnosed with ADHD in her mid-50s, after retiring from her teaching job: it was the first time in her life that she felt like she couldn’t do anything. She wanted to write, but when she sat down to concentrate, she immediately wanted to get up and do something else: “I’ll just do the laundry,” she thought. “And then go walk the dog.”
During her working years, she benefited from a “hyper-structured” schedule — until retirement. “All of a sudden I felt like the rug had been pulled out of me,” she said.
Patients like Sandler fall into a gray area. She did not remember experiencing any significant symptoms at school or at home; rather, she indicated that her symptoms became more problematic later in life. However, her 33-year-old husband had been noticing symptoms for years: for example, she was often forgetful and had trouble slowing down.
“There’s a lot more subtlety to making this diagnosis — especially in bright, high-achieving people — than a simple checklist of symptoms,” Goodman said.
Is the DSM missing symptoms?
The DSM lists nine inattention symptoms and nine impulsivity-hyperactivity symptoms that are used to assess whether an adult or child has ADHD.
The DSM does not formally include symptoms related to emotional dysregulation, which is when a person has difficulty managing their mood. It also does not formally mention deficits in executive functioning, nor problems with planning, organization, and self-regulation. But studies have shown that these symptoms are among the most common symptoms in adults with ADHD, said Russell Ramsay, a psychologist who treats ADHD in adults.
When the DSM-5 was released in 2013, there wasn’t enough high-quality research to support adding these symptoms, Goodman said. But experts say it’s still worth considering when evaluating a person.
Goodman is working with Ramsay and other ADHD specialists around the world to develop the first U.S. guidelines for the diagnosis and treatment of adults with ADHD, in collaboration with the American Professional Society of ADHD and Related Disorders.
There is an urgent need to do so, in part because of new research that has emerged over the past decade. Additionally, although adult ADHD often goes undiagnosed and untreated, some people may be diagnosed when they don’t actually have the disorder and given medications they don’t really need, said Goodman.
The new guidelines, which are expected to be available for public comment later this year, will aim to create a more uniform process for diagnosing adults, but the DSM will continue to be the “gold standard” for providers, Ramsay said.
“It’s not wrong,” he added. “It’s just incomplete.”
Is it ADHD or something else?
For adults, a proper diagnosis of ADHD usually requires several steps: an interview with the patient; medical and developmental history; symptom questionnaires; and, if possible, conversations with other people in the patient’s life, such as their spouse.
“There are no shortcuts,” said Dr. Lenard A. Adler, professor of psychiatry at NYU Grossman School of Medicine, while speaking to hundreds of providers at the American Psychiatric Association in early May. “It is not easy.”
Although everyone has trouble paying attention or is agitated from time to time, he added, it’s really the pervasiveness and prominence of the symptoms and their consistency and impairment throughout the patient’s life that help doctors decide whether an ADHD diagnosis is appropriate. .
But several factors can make the task difficult.
People who consider themselves heavy users of digital technology are more likely to report ADHD symptoms, research suggests.
There is a “chicken or the egg” dilemma, Waits said. Are people with ADHD more attracted than average to using digital technology? Or did their ADHD develop due to their use of technology?
People with ADHD are also likely to have another coexisting condition, such as substance use disorder, depression, or anxiety, which can make it difficult for doctors and patients to understand whether their symptoms are the result of ADHD, especially if symptoms overlap.
Marsh, who was diagnosed with depression as a teenager and took up to 10 different medications to treat it with little success, was eventually diagnosed with ADHD after seeing a psychologist in her hometown. This time, the practitioner took the time to talk with her parents and her partner, then carried out a new analysis of the results of the tests deemed inconclusive four years earlier.
After Marsh began therapy and began taking the stimulant Focalin, the difference in her feelings was “insane,” she said. His depression also improved.
“I could track things in my brain more easily,” she added. “I’ve been able to do a lot more things because I have the motivation to do so.”
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