More and more adults think they have ADHD. But many struggle to get diagnosed

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Casey Marie Ecker had struggled with inattention and constant exhaustion for years. But working 9 to 5 during the pandemic, she reached a breaking point.

And she had to stop.

“I just fell 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 one point it got so bad that I had to go to a clinic.”

Ecker had suspected since high school that she might not have been diagnosed with ADHD. Although her therapist suggested that some of Ecker’s symptoms were consistent with the condition, she did not have the qualifications to make a diagnosis.

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

Instead, she browses through the medications commonly used to treat the condition she suspects she has and sees 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 the number of prescription medications being dispensed for ADHD and in the number of adults who suspect they have the condition but have not yet been formally diagnosed.

In the US, one in four adults suspect they have undiagnosed ADHD, according to a study recent research on behalf of The Ohio State University Wexner Medical Center. At the same time, only 13 percent of respondents shared these suspicions with their doctor.

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

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

It is 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 children for a variety of reasons, says psychologist Anne Bailey. Children with undiagnosed ADHD could have grown into high-functioning adults by developing early coping mechanisms, such as grounding themselves using certain smells and sounds, the psychologist said. When the pandemic forced people to work in different environments, many could no longer use the same coping tools, Bailey says.

Bailey, who works at a private clinic in Toronto 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 ADHD diagnosis in adults is not easy. To make the diagnosis, healthcare providers must go back and examine the symptoms from the person’s early life.

“We want to see clear evidence that it has been there since childhood or adolescence and that it may be compensated for,” Bailey said. ‘But still the proof [is] there… that it’s not just something new for someone.’

Another factor in the increase? The proliferation of social media videos about ADHD in adults.

“Customers come in who are very proficient in the language,” Bailey said. “They are very good at describing their symptoms. They have clearly been influenced, I think, in some way, by learning about ADHD in adults and how it can manifest.”

Between 60 and 70 percent of adults who come for consultation are convinced they have the condition, she says.

“For some reason it’s a diagnosis that I think people become very attached to.”

Many of the symptoms of ADHD – such as forgetfulness and being easily distracted – are recognizable. And some symptoms — such as difficulty concentrating — can be caused by a plethora of different mental health problems, said Dr. Nikola Grujich, a psychiatrist at Sunnybrook Hospital in Toronto.

“When you look at diagnostic criteria, it’s easy to say things like, ‘Oh yeah, I have that.’ But the actual diagnosis of ADHD is a complicated clinical assessment.”

For example, feeling like you can’t keep up isn’t necessarily a sign of ADHD, he said; sometimes it can be a sign for someone to take a step back and look at the number of obligations they have to deal with.

Why it can be difficult to diagnose

The increasing demand for ADHD diagnoses in adults is encountering a shortage of healthcare workers.

“Many people identify with the diagnosis of ADHD,” says Grujich. “But many people with adult ADHD are probably struggling [when it comes to] access and receive a formal diagnosis.”

General practitioners, psychiatrists and psychologists can all diagnose ADHD as long as they have knowledge of the condition, Grujich said. But the psychiatrist said many primary care physicians have told him they are unsure how to diagnose and treat the disorder, especially in adults.

“Every time I meet primary care physicians, the first question they ask me is how to understand and understand this relatively new diagnosis of ADHD in adults.”

The private system can provide 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 primary care physicians who mistakenly believe the services are covered by the public insurance plan.

“Those are some of the tougher calls,” she said.

She and Grujic said they hope primary care physicians and nurses get more education and better tools to help them diagnose ADHD in adults.

“The most important part here is educating colleagues in general practice so that they have comfort in making the diagnosis and the ease with which treatments work best,” Grujic said.

It is a need that is emphasized in a recent opinion piece in the news JAMA Psychiatry.

Not only do doctors need a better understanding of ADHD in adults, they also need to know the pros and cons of ADHD medications and how to monitor patients, the op-ed said. The authors want clearer diagnostic criteria to be created for adult ADHD so that people get the most effective form of treatment that doesn’t just consist of medication.

ADHD is very treatable, the letter emphasizes. It just needs to be diagnosed first.