Why an ADHD diagnosis is often out of reach for Canadian university students

Gabrielle Gillett always thought of herself as an independent person—until she got to university. Suddenly, she was in a new city, in a different country. Her parents weren’t breathing down her neck to finish her homework. A Monster energy drink and an all-nighter were no longer enough to power through the work that she was too distracted to complete during the day. Despite getting straight A’s in high school, her GPA rapidly plummeted in the first year of her biology program at Queen’s University. That’s when Gillett realized she didn’t even know what being independent meant. “I got the impression that everybody else inherently knew what to do and I just somehow hadn’t gotten the memo,” she says.

When she went to the counselling centre on campus, Gillett recalled from orientation that there was a psychiatrist on staff to help with depression, anxiety and ADHD. Remembering how ADHD would come up in frustrated Google searches for why she couldn’t get her homework done as a teenager, she asked the receptionist about the process to get an ADHD screening. Gillett said she received an impatient response: “It’s a $2,000 charge to seek a diagnosis, so we can make sure you’re not just looking for medication.”

Eyes burning with tears, Gillett thanked her and didn’t mention it during her appointment.

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“Promoting student well-being and success are ongoing priorities at Queen’s,” says Cynthia Gibney, executive director, student wellness services at Queen’s, in response to Maclean’s questions about Gillett’s experience. “We cannot speak to or comment on the specifics of any individual patient interaction, but our aim is always to provide a positive and supportive experience and environment.”

Gibney says students looking for an ADHD assessment at Queen’s would be referred directly to a health-care professional for an initial assessment and discussion. Then psychometric testing may be recommended through the Regional Assessment Resource Centre (RARC) on campus. The assessment isn’t covered by OHIP, but RARC offers sliding scale payments as needed, and the cost might be partially or fully covered by employee extended benefits or the Ontario government’s Bursary for Students with Disabilities.

Adult diagnosis of ADHD is complicated. One reason is the serious issue of people misusing the medication prescribed for it. Out of a sample of 1,067 U.S. university students, nearly one in five reported using stimulant medication without a prescription, according to a 2021 study published in the Journal of Drug Issues.

But the high price tag of assessment isn’t intended to deter students, says Dr. Carlin Miller, professor of psychology with a specialization in neuropsychology at the University of Windsor. ADHD symptoms overlap with several other mental and physical disorders such as anxiety, depression, sleep deprivation and stress; hours of in-depth psychological testing and interviews are required to rule out these factors and other possible diagnoses, she says.

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Miller describes attention problems like a fever: a transdiagnostic symptom that’s present across multiple issues. Just as a fever can be caused by the flu, strep throat, heat stroke, etc., there can be many causes behind problems with focus. Questions about family history, cognitive skills, an understanding of mental health and personality also play into the assessment.

While concerns about false diagnoses and stimulant abuse are real, it’s also difficult, confusing and expensive for students like Gillett to figure out what’s going on. Leaving the issue unaddressed can result in mental health issues, education and career outcomes, while diagnosis can make school more manageable and ruling out ADHD can help students with other conditions get the help they need. But students and experts agree that for these things to happen, testing and support needs to be made more accessible.

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ADHD has a prevalence rate of 7 to 11 per cent in Canadian children, according to Miller. For Canadian adults, she says that number is closer to 3 to 5 per cent, and possibly higher. It’s usually diagnosed between Grade 1 and 6, but Miller says there are a few other “bumps” when people can realize something is wrong. One is in adolescence, and another is around the time university starts. Finally, ADHD can be diagnosed when people go on to become parents of children undergoing assessment for the disorder.

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Those diagnosed in university have often found themselves unable to cope academically, although they could cope in earlier years of schooling, Miller says. “With that lack of personal attention [in] big courses, with less one-on-one engagement with an instructor, their academics start to fall apart.” She says this can occur even if a person knew they had symptoms in the past, because university is when education starts to feel like it “matters.”

Sanya Sagar, a Ph.D. candidate in clinical psychology at the University of Windsor who is completing her dissertation in ADHD research, says it’s likely someone with untreated ADHD will really struggle in university. For one thing, symptoms can be easier to miss without the close watch of parents and teachers—it can be harder to notice your own behaviour. Plus, symptoms can look different in adults. Where children may not be able to focus enough to finish their homework, adults might lose track of household tasks, such as paying bills. That could be symptom of ADHD or you could just be a forgetful person.

Gillett, who grew up in the U.S., was always told she was a “pleasure to have in class.” But behind the scenes, she’d constantly pull all-nighters, cram a week’s worth of work into a few hours and stay at her desk long after other students set down their pencils, all because concentrating felt like “pulling teeth.” Her parents told her any problems she had with focus were because she wasn’t “applying herself,” and she strove to meet their high academic expectations.

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Two years after finishing her degree at Queen’s, Gillett went to Trent University for nursing. At the wellness centre, a registered mental health nurse was supportive and validating about Gillett’s anxiety, but when Gillett asked if her problems with attention could be because of ADHD, the nurse told her that if she had good marks in school and hadn’t been diagnosed till now, she probably didn’t have it. Gillett says this reinforced the self-doubt she had as a child, the idea that “maybe it’s just all in my head.”

“At Trent Wellness Services, we want all students to feel heard and supported, and are deeply committed to doing so,” says Nona Robinson, associate vice-president, students, at Trent. When a student comes in with a mental health concern, including ADHD, Robinson says that their staff work “in ways that emphasize compassion,” to screen for symptoms and to “help ensure the student is provided with the appropriate supports and referrals” on or off campus.

University students who suspect they have ADHD often face a system lacking the resources necessary for diagnosis. Although schools may have full-time psychologists on staff, they aren’t always available to do ADHD assessments, says Miller. While some have psychiatrists who are covered by provincial insurance, Miller says they approach assessments differently, and their diagnoses don’t always provide the information needed for the student to receive specialized accommodations. Instead, students are frequently referred to private psychologists by university counselling centres, and the up-to-$3,000 cost of private assessments aren’t usually covered.

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While family doctors are often considered a cost-effective avenue for diagnosis, Miller and most other ADHD professionals agree these diagnoses aren’t always accurate. “This is a psychiatric diagnosis,” she says. “It requires more than 15 minutes in the office, and general practitioners don’t have the time or training to perform this level of assessment.”

If wrongly diagnosed by a physician, a patient’s needs are ultimately left unmet. If one has anxiety or depression, for example, a diagnosis of ADHD—if it leads to medication—may cause further harm, as stimulants affect the sympathetic nervous system. If stress is the actual problem, medication can help concentration, but the distress will remain. And when a diagnosis doesn’t meet an individual’s needs, Miller says they’re more likely to self-medicate to manage unaddressed symptoms or do poorly in their courses.

Each year leading up to university, Arjun Kaul stayed up a little later at night. Each night, he spent more time reading the same sentence over and over. But at the University of Toronto, studying neuroscience, Kaul reached his inflection point: he couldn’t function, let alone sleep. Most days, Kaul had to choose between completing coursework and going to class or going to bed and eating three times a day. He’d miss office hours and go into tests without having done 75 per cent of the preparatory work.

When Kaul sought help from student counselling services in his second year, he wasn’t seeking an ADHD diagnosis; he was seeking help for the complete academic burnout he was experiencing. He says it was an ironic kind of luck that got him access to a psychiatrist through the school, at no charge—he thinks it was the degree of difficulty he was facing “that was severe enough to get me registered with the system and receive a diagnosis,” he says.

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Kaul says he benefited from some of the things he learned in neuroscience, from student government and through friends who had already navigated the system, such as knowing about mental versus physical health problems, the differences between a social worker, a doctor and a psychologist, and what was covered under his student health plan. “It was workable once I got in the system,” he says. “Even if you don’t enjoy that process, you feel vindicated by it.”

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When Amanda Lang was 44, she returned to university for the third time. Her first attempt had been in 1995, at Thompson Rivers University, right after high school. Her second try was in 2006, when she gave it another three semesters at the University of Northern British Columbia. Finally, after tens of thousands of dollars lost in tuition and a brief consultation with a mental health doctor who confirmed she probably had ADHD, Lang enrolled at Ryerson University in the fall of 2020, determined to find the supports she needed to make it through her undergraduate program in architecture.

Lang first realized she might have ADHD five years ago while chatting to her chiropractor, whose daughter was being assessed at the time. Before then, she had never considered the possibility that there was a reason she’d spend hours on school work with nothing to show for it. She knew she was smart, but chalked her trouble up to a moral failing.

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“I just always thought that something was wrong with me; that I’m too flaky, that I should just settle down, get my act together, grow up,” Lang says. “And now I’m finding out that it’s actually because I have a neurochemical difference in my brain.”

Those with untreated ADHD are at greater risk for learning difficulties, fewer years of schooling and dropping out, according to the Centre for ADHD Awareness, Canada. A study published in the Journal of Clinical Child & Adolescent Psychology following 510 college students found that only 49 per cent of the students not taking medication for their ADHD completed eight semesters. For students taking medication, that number was 54 per cent and for those who didn’t have ADHD at all, it was 59.

Miller says students with ADHD are also less likely to successfully manage full-time or part-time employment while taking courses. Because they often need more time to finish their education, they’re also likely to graduate with more debt.

After Lang realized the process of getting a diagnosis through school would take several months, she pursued a private assessment out of pocket and received a formal diagnosis. She couldn’t afford to fail while she waited. The investment was one she was willing to make after decades of ADHD-related struggles, including flying through more than 20 jobs.

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This September, Gillett again sought support through her university, but this time specifically for ADHD. Via Trent Health Services, she’ll receive a referral to a clinic in Toronto, where she will pay for an ADHD assessment. While she might finally get some clarity, she wishes she’d been given more guidance earlier on. “It wasn’t ever ‘Why do you feel this way?’ If I had the opportunity to explain my story, maybe it would have come to light that I’ve been showing symptoms my whole life.”

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“No one should be shut down by their mental health service provider,” Sagar says. She and Miller both acknowledge there’s lots left to be done in the field, such as addressing discrimination against racialized students and girls (who are less frequently flagged for ADHD) as well as low accessibility of testing. “There need to be ways for students to get assessments in a cost-effective manner,” says Miller. “But it is important to triage who needs them, as not every student who struggles with first-year university needs a full psychological assessment.”

Sagar says community mental health resources that offer free assessments exist in Canada, but there aren’t enough of them, so they come with huge waiting lists. “I think the issue isn’t that we need to reinvent the wheel here,” she says. “We just need to put more money into these services.”

In the meantime, Sagar is exploring how we can mitigate negative outcomes of the disorder through education. The research shows that if children have ADHD but also strong self-esteem, it might protect them from poor grades and social interactions. “Kids with ADHD [who] have low self-esteem start to think they’re dumb [and] that they don’t know how to set goals or how to study,” says Sagar. She says workshops that explain how believing in yourself can protect you could be helpful for young children who have ADHD, in addition to training for parents, teachers and administrators who have the power to help.

Gillett hopes a diagnosis will provide some relief after years of feeling the way Sagar describes. “I’m proud of myself for being able to ask for the referral,” she says.

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This article appears in print in the 2022 University Rankings issue of Maclean’s magazine with the headline, “Why can’t I focus?”