Adult ADHD: A debilitating condition that’s often missed
Russ Le Blanc has been on syndicated radio shows, worked in ad agencies and even performed as a motivational speaker. But he had trouble motivating himself. “I could tell people what to do, but I couldn’t do it,” he says. Daily tasks, like paying bills or responding to an important work email, were inexplicably difficult. He was fired from a couple of his jobs and quit others, finding he couldn’t stick with jobs that didn’t fully engage him.
Then, in his late 40s, he heard someone mention symptoms of Attention-Deficit/Hyperactivity Disorder (ADHD) that he related to. He did some research online, and took a test. “I scored very high,” he says. His family doctor referred him to a psychiatrist who diagnosed him with ADHD, based on standardized tests and interviews over a couple of sessions.
“I always had that traditional misconception that ADHD means hyper kids,” he jokes.
But Le Blanc is among an estimated 4% of adults who have ADHD. He takes a long-acting stimulant medication and talks to his psychiatrist to improve his symptoms. But he believes his career has suffered due to the delay in diagnosis. “What if this were discovered at an earlier age?” he wonders.
While the medical community once thought kids outgrew ADHD, it’s now believed more than half of children with ADHD will continue to struggle with the disorder as adults, according to Doron Almagor, a child and adolescent psychiatrist and head of the Possibilities Clinic in Toronto. But adults with ADHD face numerous barriers in accessing a diagnosis and treatment – not the least of which is that the first-line treatment is not publicly available to adults in many provinces.
What is adult ADHD?
The key symptom of ADHD is attention disregulation – not being able to focus adequately, and sometimes over-focussing. “People with ADHD often aren’t able to prioritize what they need to focus on or to ignore what they need to shut out,” says Heidi Bernhardt, a registered nurse and the director of the Centre for ADHD Awareness Canada (CADDAC). The other hallmarks are hyperactivity and impulsive speech or behaviours. However in adulthood, hyperactivity may be far less noticeable than in children, largely because adults have learned how to control their movement.
As with children, adult ADHD can range from mild to more severe. “ADHD is on a spectrum,” explains Bernhardt. In addition, the symptoms depend on the person. The most impairing symptoms in one person might be that they blurt things out in anger or take too many risks while driving, while another person may daydream too much.
Many might identify from time to time with such symptoms. But for a diagnosis of ADHD, people must have at least five attention deficit symptoms or five impulsivity and hyperactivity symptoms. These must lead to significant impairments in one’s personal or professional life.
In many cases, the condition is actually more debilitating for adults “because what you do as an adult has more severe consequences,” explains Almagor. “If you punch someone in grade two, your parents are going to work with you to stop that, but if you say something impulsively as an adult, you could lose your job.”
Indeed, while the evidence regarding ADHD in adults is largely derived from small studies and is somewhat inconsistent, the literature that’s emerging suggests adults with ADHD tend to change jobs frequently, have lower incomes, and have more difficulties in maintaining long relationships. One study found that 35% men who had been diagnosed with ADHD as children had been found at fault in two or more vehicle collisions, compared with 19% in the control group. Perhaps as a coping mechanism due to the lack of support for their underlying condition, substance abuse rates seem to be higher in ADHD populations, as are anxiety and depression.
At the same time, there are “lots of positive traits” noticed in people who have ADHD, says Alice Charach, a psychiatrist at the Hospital for Sick Children. “They tend to be chatty and sociable. They’re often funny and have new ideas.”
Barriers to getting a diagnosis of adult ADHD
Adults with ADHD fall into two groups – those who were diagnosed as children and those whose ADHD wasn’t identified when they were kids.
For the first group, treatment may have been discontinued because older adolescents must often find new providers, either because they’ve been treated by a paediatrician or they move for post-secondary education or jobs. And although the evidence for ADHD in adults has existed for more than 15 years, some frontline health workers who were educated decades ago still think of ADHD as a paediatric disorder, explains Bernhardt.
Plus, Tara Gomes, a scientist with the Institute for Clinical Evaluative Sciences (ICES), who led a major study into treatment variation of adult ADHD in Canada, points out that adolescents may have difficulty because “providers are very concerned that people will be using these drugs for recreational use.” Stimulants used to treat ADHD can be dangerous if abused, either as an aid to studying or to get high. “Doctors might just say, ‘You should really be tapering off of these drugs now that you’re entering your adult years.’”
Other family physicians might refer the patient to a psychiatrist or psychologist to conduct a new diagnostic assessment in adulthood, which can take many sessions and cost $1,000 or more. (Though the services of psychiatrists are covered, Bernhardt explains that, in Ontario, many psychiatrists charge outside of OHIP for aspects of an ADHD assessment that they don’t feel are compensated.)
Many adults with ADHD were never diagnosed as children, however, because they grew up when the condition wasn’t on parents’ and teachers’ radars. “There’s a backlog,” explains Bernhardt. In many cases, these individuals may be seeing their doctor for some of the associated mental health issues that can come with ADHD. “They’re not coming in saying, ‘I think I might have ADHD.’ They’re saying, ‘I keep blowing it, I feel so awful, I’m worried all the time,” says Charach. In these cases, physicians often treat the co-occurring conditions of anxiety or depression but miss the underlying one.
As psychologists and psychiatrists can be inaccessible and cost-prohibitive, Almagor argues that family doctors should be diagnosing and treating most cases of adult ADHD. His organization, the Canadian ADHD Resource Alliance, has held conferences across Canada to educate family physicians on how to recognize and manage ADHD in adult patients, and they also provide diagnostic tools and training videos on their website.
Treatment can be difficult to access for adult ADHD sufferers
Treatment for ADHD can include medication and/or non-pharma approaches including psychotherapy, mindfulness, and more. For those with mild ADHD, getting help with organizational strategies and workplace accommodations may be enough, says Charach. However, most people need a combination of both pharmaceutical and non-pharmaceutical approaches, says Gomes. Even then, she explains, the therapies aren’t a cure; rather, they help reduce the severity of the symptoms.
Medication includes stimulants – both long-acting and short-acting – and atomoxetine, the non-stimulant medication are approved for the treatment of ADHD in adults. A review by the Ontario Drug Research Policy Network (ODPRN) found all drugs result in a significant improvement for most people, with no significant differences between the drugs. Because stimulants have been used for a longer period to treat ADHD, they’re seen as the first-line treatment. But atomoxetine is helpful when stimulants fail or when substance abuse is an issue.
Health Canada has warned that, in rare cases, both stimulant and non-stimulant drugs could increase the risk of suicidal thoughts and other psychiatric problems in children, though the link hasn’t been demonstrated in adults. In addition, the ODPRN found long-term stimulant use was associated with increases in blood pressure and heart rate, but did not find an increase in serious cardiovascular events like heart attacks among users of the drugs. However, Gomes is quick to point out that participants in studies were an average age of 40, so there isn’t sufficient research about adverse effects among people in their 50s and 60s. “That’s something that’s really important for us to continue to investigate,” she says.
Patients who don’t have private drug coverage may qualify for provincial drug coverage (depending on their age and income) but not all types of ADHD medications are covered by public plans, Gomes’s 2015 study found. (The study was funded by the ODPRN in collaboration with ICES.) In BC and the Atlantic provinces, while short-acting stimulants are covered, long-acting stimulants are either not publicly funded for people above a certain age or only available through special authorization, while non-stimulant ADHD drugs aren’t funded at all. In Ontario, long-acting stimulants tend to be publicly covered, but the non-stimulant option (atomoxetine) is only available through an Exceptional Access Program (EAP), which physicians may find too burdensome to apply for on behalf of patients, explains Gomes.
Gomes’s team recommended that long-acting stimulants be provincially funded with no age restrictions and that the non-stimulant atomoxetine be funded under the “limited use” criteria, rather than the EAP. With Limited Use, patients who meet the symptom criteria would automatically be able to access the drug, if covered by a public plan.
The funding restrictions are a problem because patients prefer the long-acting drugs and are more likely to continue them over the long term, says Gomes. “You don’t get the peaks and valleys [of attention] that you have with the short-acting medication,” she says.
According to Almagor, provinces tend not to fund long-acting stimulants on the grounds that they’re more expensive and there haven’t been studies showing them to be more effective than short-acting stimulants, if both are taken properly. However, research by Gomes’s team found that patients on short-acting stimulants were more likely to stop taking them, in comparison to patients taking long-acting stimulants. Plus, Almagor argues, there is emerging evidence that long-acting stimulants are more effective than their short-release counterparts.
Almagor adds provincial decisions to only fund short-acting stimulants could lead to more abuse, given they’re easier to “crush and abuse” for a high.
Accessing non-pharmaceutical treatments, meanwhile, can be even more cost-prohibitive than the drugs. Generally, people with ADHD benefit from 12 to 16 sessions with a psychologist, with check ins every few months afterward, according to Almagor. But this therapy can add up to many thousands of dollars. “Psychotherapy for adult ADHD is not possible to obtain publicly,” says Almagor.
While addressing the cost barriers to diagnosis and treatment is necessary, Almagor feels like awareness of adult ADHD – among doctors and patients alike – is the most important step to improving diagnosis and treatment. “Currently, there’s a lot of stigma. ADHD among adults is seen as something that’s almost funny, instead of something that has serious consequences on people’s lives.”