More adults think they have ADHD. But many are struggling to get diagnosed

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Casey Marie Ecker had struggled with inattentiveness and constant exhaustion for years. But as she worked a 9-5 during the pandemic, she hit a breaking point.

And she had to quit.

"I was just running behind on all my tasks and didn't have any focus or drive," said the 29-year-old, who now works odd jobs to make ends meet in Montreal. "At a certain point, it got so bad that I had to go to a clinic."

Ecker had suspected since high school that she might have undiagnosed ADHD. While her therapist suggested some of Ecker's symptoms were consistent with the condition, they didn't have the qualification to make a diagnosis.

At a primary care clinic, the Montrealer says starting in February a rotating team of doctors gave her prescriptions for psychostimulants but no one has told her whether she has ADHD.

Instead, she's kept cycling through medications commonly used to treat the condition she suspects she has and is seeing what helps.

But what she really wants is a diagnosis.

"It would be incredibly validating and also, just being able to understand why I function the way I function."

Her story is part of a growing pattern both in the increase in prescription drugs being handed out for ADHD and in the number of adults who suspect they have the condition but have not been formally diagnosed.

In the U.S., one in four adults suspect they have undiagnosed ADHD, according to a recent survey commissioned by the Ohio State University Wexner Medical Center. At the same time, only 13 per cent of respondents shared those suspicions with their doctor.

There's no similarly recent data in Canada, but there's evidence that a growing number of adults are taking ADHD medications.

In 2023, roughly 600,000 more Canadians filled prescriptions for psychostimulants than in 2019 a 67.7 per cent hike over four years, according to figures from the health research firm IQVIA. The highest jump was seen among young women, those between 18 and 24, who went from 4.6 per cent to 8.6 per cent of the population. There was also a jump among women between the ages of 25 and 44 from 3 per cent to 6.4 per cent.

It's unclear how many of them like Ecker do not have a formal diagnosis.

Going back to childhood

Some people could have missed being diagnosed as a child for many reasons, says psychologist Anne Bailey. Kids with undiagnosed ADHD could have grown into high-functioning adults by developing early coping mechanisms, like grounding themselves using certain smells and sounds, the psychologist said. When the pandemic forced people to work in a different environment, many could no longer use the same coping tools, Bailey says.

Bailey, who practises at a Toronto private clinic specializing in ADHD, said she has seen a significant increase in the number of adults who have noticed symptoms and wanted to get tested since the pandemic.

But an adult ADHD diagnosis isn't simple. To make the diagnosis, health-care workers need to go back and examine symptoms from the person's early life.

"We want to see clear evidence it's been there since childhood or adolescence and perhaps compensated for," Bailey said. "But still the evidence [is] there that it's not just a new thing for someone."

Another factor in the uptick? The proliferation of social media videos on adult ADHD.

"Clients are coming in very well versed on the language," Bailey said. "They're very good at describing their symptoms. They've clearly, I think, been influenced in some way, learning about adult ADHD and how it can present."

Between 60 to 70 per cent of the adults who come in for a consultation are convinced they have the disorder, she says.

"For some reason, it's a diagnosis that I think people get very attached to."

Many of the symptoms of ADHD like forgetfulness and being easily sidetracked are relatable. And some symptoms like difficulty focusing can be caused by a plethora of different mental health issues, said Dr. Nikola Grujich, a psychiatrist at Sunnybrook Hospital in Toronto.

"When you are looking at diagnostic criteria, it's easy to say things like, 'Oh yes, I have that.' But the actual diagnosis of ADHD is a complicated clinical assessment."

For example, feeling like you can't keep up is not necessarily a sign of ADHD, he said; sometimes it may be a sign for a person to take a step back and look at the number of obligations they're juggling.

Why getting a diagnosis can be difficult

The rising demand for adult ADHD diagnoses is coming up against a shortage of health-care workers.

"A lot of people identify with the diagnosis of ADHD," said Grujich. "But a lot of people who have adult ADHD are probably struggling [when it comes to] accessing and getting a formal diagnosis."

Family doctors, psychiatrists and psychologists can all give a diagnosis of ADHD, as long as they are knowledgeable about the condition, Grujich said. But the psychiatrist said many family doctors have told him they're unsure of how to diagnose and treat the disorder, especially among adults.

"Whenever I meet with family doctors, the first question they ask me is how to understand and make sense of this relatively new diagnosis of adult ADHD."

The private system can offer a faster diagnosis. There are clinics like Bailey's that specialize in the condition but it can be expensive. Testing at her clinic starts at $2,300.

She said patients are sometimes referred to her clinic by family doctors who incorrectly think the services are covered by the public insurance plan.

"Those are some of the harder calls," she said.

She and Grujic said they hope family doctors and nurse practitioners are given more education and better tools to help them diagnose adult ADHD.

"The most important part here is to educate colleagues in family practice, so they have comfort in establishing the diagnosis and comfort with which treatments work best," Grujic said.

It's a need highlighted in a recent opinion piece in the journal JAMA Psychiatry.

Not only do clinicians need a better understanding of ADHD in adults, they need to know the pros and cons of ADHD medications and how to follow up with the patients, the opinion piece said. The writers want to see a clearer diagnostic criteria created for adult ADHD, so people receive the most effective form of treatment, which may not only be medication.

ADHD is highly treatable, the letter points out. It just needs to be diagnosed first.