Why ADHD in adults is difficult to diagnose

Shortly before Katie Marsh dropped out of college, she began to worry that she might have attention deficit hyperactivity disorder.

“The boredom was like a burning sensation inside me,” said Ms. Marsh, now 30 and living 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 just have to move all the time.

So she asked for an ADHD evaluation, but the results, she was surprised to learn, were inconclusive. She never went back to school. And only after seeking help again four years later was she diagnosed with ADHD by a specialist.

“It was pretty frustrating,” he said.

ADHD is one of the most common psychiatric disorders in adults. However, many healthcare providers do not have uniform training in how to evaluate it, and there are no clinical practice guidelines in the United States for diagnosing and treating patients beyond infancy.

Without clear rules, some providers, even if well-intentioned, are simply “making it up as they go along,” said Dr. David W. Goodman, assistant professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine.

This lack of clarity leaves providers and adult patients in a bind.

“We desperately need something to help us orient the field,” said Dr. Wendi Waits, a psychiatrist at Talkiatry, an online mental health company. “When everyone practices a little differently, it's hard to know how to best approach it.”

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 the two.

The latest data suggests that approximately 11% of children between the ages of 5 and 17 in the United States have been diagnosed with ADHD, and an estimated 4% of adults suffer from this disorder. But until two decades ago, most mental health professionals “didn't really believe in adult ADHD,” Dr. Goodman said.

Now, in most cases, this is no longer the case. And during the pandemic, prescriptions for stimulants, used primarily to treat ADHD, “increased dramatically,” particularly among young adults and women, according to a study published in JAMA Psychiatry in January.

To diagnose the condition, providers rely on the DSM-5, the American Psychiatric Association's official manual of mental disorders, which contains a somewhat arbitrary requirement: to meet the diagnostic criteria for ADHD, significant symptoms, such as persistent forgetfulness and ability to take turns should be present in at least two contexts before the age of 12.

But sometimes, older patients don't remember childhood symptoms or say those symptoms were mild.

Judy Sandler, 62, lives in Lincolnville, Maine, She wasn't diagnosed with ADHD until her mid-50s, after retiring from her teaching job—it was the first time in her life she felt like she couldn't do anything. She wanted to write, but when she sat down to concentrate, she immediately felt the need to get up and do something else: “I’ll just do the laundry,” she thought. “And then go walk the dog.”

During his working years he benefited from a “hyperstructured” schedule – until retirement. “All of a sudden, I felt like the rug had been pulled out,” she said.

Patients like Ms. Sandler fall into a gray area. She did not recall having significant symptoms at school or at home, rather she indicated that her symptoms became more problematic later in her life. Her husband of 33 years, however, had been noticing her symptoms for years: She was often forgetful, for example, and found it difficult to slow down.

“There's a lot more subtlety in making this diagnosis — especially in bright, high-functioning people — than a simple checklist of symptoms,” Dr. Goodman said.

The DSM lists nine symptoms of inattention and nine symptoms of impulsivity-hyperactivity that are used to evaluate whether an adult or child has ADHD

The DSM does not formally include symptoms related to emotional dysregulation, which is when someone has difficulty managing their mood. It also does not officially mention deficits in executive functioning, or problems with planning, organization and self-regulation. But studies have found that these are some of the most common symptoms that adults with ADHD experience, said Russell Ramsay, a psychologist who treats adult ADHD.

When the DSM-5 was published in 2013, there wasn't enough high-quality research to support the addition of these symptoms, Dr. Goodman said. But experts say it's still helpful to take this into account when evaluating someone.

Dr. Goodman is working with Dr. Ramsay and other ADHD specialists from 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 urgency to do so, in part because of new research that has emerged in the last decade. Additionally, while ADHD in adults is often undiagnosed and untreated, it may be diagnosed in some people who don't actually have the disorder — and who are given medications they don't really need, Dr. Goodman said.

The new guidelines, which are expected to be available for public comment later this year, will aim to create a more uniform process for diagnosis in adults, but the DSM will continue to be the “gold standard” for providers, he said Dr. Ramsay.

“It's not wrong,” he added. “It's just incomplete.”

For adults, a correct diagnosis of ADHD typically requires several steps: an interview with the patient, a medical and developmental history, symptom questionnaires, and, if possible, conversations with other people in the patient's life, such as a spouse.

“There are no shortcuts,” said Dr. Lenard A. Adler, a professor of psychiatry at NYU Grossman School of Medicine, as he spoke to hundreds of providers at the American Psychiatric Association conference in early May. “It's not easy.”

While everyone has some difficulty paying attention or is restless from time to time, he added, it's really how pervasive and significant the symptoms are and how constant and disabling they have been throughout the patient's life that helps doctors decide whether a diagnosis of ADHD is appropriate. .

But several factors can make it complicated.

People who consider themselves avid users of digital technology are more likely to report symptoms of ADHD, research suggests.

There is a “chicken or the egg” dilemma, Dr. Waits said. Are people with ADHD attracted to using digital technology more than the average person? Or did their ADHD develop due to technology use?

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 both doctors and patients to understand whether their symptoms are the result of ADHD , particularly if symptoms overlap.

Ms Marsh, who had been diagnosed with depression as a teenager and had taken up to 10 different medications to treat it without much success, finally received a diagnosis of ADHD after visiting a psychologist in her hometown. This time, the therapist took the time to talk to her parents and her partner, and then she re-analyzed the test results that had been deemed inconclusive four years earlier.

After Ms Marsh began therapy and started taking the stimulant Focalin, the difference in how she felt was “insane”, she said. Her depression also improved.

“I could keep track of things in my brain more easily,” he added. “I have been able to do a lot more things because I have the motivation to do it.”

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