More adult ADHD diagnoses, but some fall for misinformation

The rise of these videos in the past several years has brought broader attention to what was previously thought to be just a childhood disorder you grew out of in adulthood.

But a 2023 report by Manulife showed a 25 per cent increase in medication claims submitted by adults diagnosed with attention deficit hyperactivity disorder, or ADHD, in Canada between 2021 and 2022. The average increase from 2017 to 2020 was 15 per cent.

The report links this rise to the COVID-19 pandemic exposing symptoms previously masked by structured work environments and the growth of ADHD content on social media sites.

Yet while social media has led to greater awareness of adult ADHD, including reducing stigma, recent research out of the University of British Columbia shows how misinformation is shaping perceptions. 

It’s leading to more self-diagnoses based on symptoms not aligned with clinical guidelines, and experts say this underscores the need for better access to proper assessments.

“There’s a lot of different aspects to ADHD, and people have different symptoms, and often the way the TikTok videos are phrased is very clickbaitish,” said Dr. Doron Almagor, psychiatrist and chair of the Advisory Council for the Canadian ADHD Resource Alliance, or CADDRA.

“A lot of them will say things like, ‘The secret nobody wants you to know about ADHD,’ or ‘The one symptom of ADHD.’ That’s not a proper way of diagnosing ADHD.”

While TikTok and Instagram have raised awareness of adult ADHD, experts warn they are spreading misinformation.

“Often they’re people with ADHD, not professionals talking about their experience,” Almagor said. “They’ll talk about their own symptoms, and those symptoms are not always universal.”

Psychiatric nurse practitioner Jamal Virani said ADHD videos on sites like TikTok are causing more adults to assume they have it, when instead they might have some form of onset adult inattention caused by other health problems.

A March report by UBC analyzing the 100 most-viewed TikTok videos related to ADHD found less than half of the claimed symptoms aligned with clinical diagnosis guidelines.

Almagor said many myths have circulated on social media. One of the biggest is that ADHD is a harmless disorder causing inattention or hyperactivity.

But left untreated, ADHD can lead to substance abuse and psychiatric issues like depression, as well as marriage breakups, job losses and even higher death rates.

“It’s a serious public health issue.”

ADHD, previously known as attention deficit disorder (ADD), is a chronic neurodevelopmental disorder that experts agree presents itself during childhood, usually before age 12.

According to the Centre for ADHD Awareness Canada, ADHD affects about five to seven per cent of children and four to six per cent of adults, or about 1.8 million Canadians.

Almagor said experts did not recognize ADHD in adults until the 1990s.

Claire Sira, a registered psychologist in Victoria specializing in ADHD and an executive board member for the Canadian Psychological Association, said it’s better described as a disorder of attentional control and executive functioning rather than attention deficit.

“Once we get into adulthood, it isn’t that people can’t pay attention, it’s that we can’t organize ourselves and we can’t control where our attention goes,” said Sira, who was diagnosed with ADHD as an adult.

“Planning, organizing, inhibiting impulsive behaviour, speech, spending, drug use, sexual partners, like there’s a lot of behaviours that don’t really come up for us until we get older and usually have moved out.”

Almagor said not enough family physicians have the expertise to diagnose and treat adults, so “the system is very stretched,” leading to long wait lists.

The health system doesn’t provide physicians time to do a proper ADHD assessment, especially for more complex cases, and psychologists and nurse practitioners are not covered by OHIP. 

Almagor and Sira said a proper assessment involves different psychological testing including self-assessments, cognitive testing, collecting personal and family history, medical assessments, collecting school records and several interviews, all of which can take up to 10 or so hours.

Both experts worked within the public health space before opening their own private practices.

But other experts argue an ADHD assessment does not require as much time and a one- to two-hour clinical diagnostic assessment using pre-surveys and the Diagnostic and Statistical Manual of Mental Disorders threshold test is sufficient.

Rebecca Bruzzese had been struggling with her mental health for years.

At 28, after she was treated for depression and anxiety, a psychiatrist diagnosed her with bipolar disorder and prescribed lithium for two years.

“It was arguably the worst two years of my life,” the Toronto woman said. “I was struggling so badly in my day-to-day life.”

With her treatment making her feel worse, Bruzzese looked into other possibilities.

“A lot of the behaviours or things that I was experiencing that had led to the bipolar diagnosis — which I never really felt fit — really clicked within the umbrella of ADHD.”

Bruzzese, now 33, said misinformation led to the delay in her diagnosis. She had brought up the possibility of ADHD to mental health professionals before but was told she didn’t meet the threshold.

Victor Melgar was in his late 20s and suffering from severe depression after university, participating in what he calls “risky behaviour,” including with sex and alcohol.

Then one night three or four years ago, a woman he was seeing mentioned getting assessed for ADHD.

“I think it’s probably because she could see a lot of things that maybe she was experiencing or felt, and just brought it up to me,” said Melgar, who lives in Toronto.

Melgar used work insurance benefits to get a private assessment.

During that process, Melgar spoke with his siblings, who said it was clear he had ADHD from a young age, but the truth had been hidden from him.

“They acknowledged that at some point, allegedly, my school and teachers did bring this up to my mom, and she didn’t want to do anything with that information.”

Language and culture barriers made it hard for Melgar’s immigrant parents to understand, he said, that “something’s wrong with your child.”

“I can’t imagine that you take that well and you don’t feel attacked by this.”

Now 33, Melgar wishes he’d had the resources to pursue help for the disorder when he was younger.

“I think it would have been a big help in university in paying attention to lectures, keeping on top of work, not feeling so overwhelmed by a lot of things.”

With more awareness of ADHD in adults, the ability to get a proper assessment is becoming more important.

The high cost of private clinics, up to $3,000, has led to many online health services in the last few years offering quick diagnoses for a few hundred dollars and cheap monthly subscriptions for ongoing care.

But mental health practitioners Almagor and Sira said they’ve seen many people diagnosed at online services come to their clinics because they didn’t feel understood, or felt their diagnosis was inaccurate.

Bruzzese and Melgar said their ADHD diagnoses and treatment have been “life changing.”

Bruzzese said the first time she took the proper medication she cried, with joy and grief. “It was almost like jealousy that people just get to feel like that when they wake up every day.”