Around Christmas last year, Pam Boutilier says she was feeling fed up and “desperate.”
The 44-year-old from Charlottetown recalls spending two days combing through a list of P.E.I. psychologists she had found online. She suspected she might have attention deficit hyperactivity disorder (ADHD), and was looking for someone who specialized in it, searching for relief.
“I was at the end of my rope,” Boutilier said. “My mind was a dog untrained and it just kept going.”
Like many Islanders, Boutilier doesn’t have a family doctor. She said she’s been on the waiting list for more than two years.
Staying organized and on task has never been easy for Boutilier. What many take for granted as quick tasks or errands stretch into hours-long or sometimes even days-long projects.
Yet she managed to do more than cope and built a successful career.
“It was exhausting,” she said. “I kind of knew for a long time I was just not fitting into the kind of world I was trying to live in.”
‘Fail or wear themselves out’
“I read tons of books on different ways to do your schedule and strategies and that sort of thing,” she said. “That was actually the thing that initially made me even consider ADHD.”
Last year after having some heart-to-heart conversations with a friend who has the disorder, as well as watching some YouTube videos on ADHD, Boutilier realized she might also have it.
She said before then, it was difficult to make the decision to seek treatment.
“If someone with ADHD is told enough times by people and society at large that they are just disorganized and need to focus more, then they may just keep trying until they fail or wear themselves out,” Boutilier said.
‘A lifelong condition’
More people are being diagnosed with ADHD later in life, said Dr. Ainslie Gray. She treats adults with the disorder at the Springboard Clinic in Toronto, which diagnoses and treats both children and adults with ADHD.
She noted that about 65 per cent of patients Springboard assesses now are people 18 and over.
ADHD is one of the most common psychiatric diagnoses in children in Canada, Gray said, and affects about five per cent of Canadians — half male and half female.
“It is a lifelong condition that is characterized by challenges with focusing and paying attention. It is not always accompanied by hyperactivity,” Gray said, adding anxiety and sadness are also often associated with it.
“People do not grow out of it. People learn to compensate and live with it.”
Gray said while it can make learning more challenging, ADHD is not in itself a learning disability.
Adults she sees, Gray said, often complain of anxiety and sadness and have used or abused substances to “slow down their brain” and “turn off some of the noise.”
‘Shame and guilt’
In addition to difficulties with focus and attention, Gray said a challenge for those with ADHD is the stigma associated with it — that people with undiagnosed ADHD are often perceived as lazy or are even viewed as lacking intelligence.
“Often shame and guilt and ‘I’m not good enough’ are the emotions that may delay people from seeking support,” said Gray. “They may never think that ADHD is a potential.”
Women especially tend to blame themselves, she said.
ADHD can be diagnosed by either psychologists who administer psycho-educational assessments that look at a patient’s learning skills and potential deficit, Gray explained, or by physicians who take patients through questionnaires.
At Springboard, assessments take about half a day and include input from a psychologist, a medical doctor and a coach-therapist, she said, and include patients and a “significant other” completing questionnaires.
“Unfortunately, there are no blood tests or brain scans or any other kind of imaging yet to confirm an individual’s diagnosis,” Gray said. But, she assures, researchers are working on it.
‘Just try harder’
But the road to a diagnosis can be riddled with detours and potholes.
Boutilier recalls being perceived as a lazy, dreamy child with a cluttered bedroom floor.
“The messaging was really more that it was all my fault, if I would just try harder. And I really believed that for a very long time,” she said.
But she was a good student who loved to learn, which she says helped her get through school relatively unscathed — but also without a diagnosis.
Another part of the stigma is that people believe ADHD is a children’s disorder, Boutlier said. “Even now it’s difficult for an adult woman with ADHD. People for a long time thought it was only a young person’s disorder.”
Different for girls
The way the disorder presents can be different for females than it is for males, which can lead to delayed diagnosis for women said Dr. David Wong of Summerside, who specializes in treating ADHD in adults.
Wong is a pediatrician who has spent most of his career treating ADHD in children and said he made the full transition to specializing in the disorder in adults about three months ago.
Wong said his desire to specialize in ADHD comes from watching a family member suffer from it their whole life, which he said has been difficult to witness.
“Boys are more likely hyperactive and disruptive and to get into trouble in school,” Wong said, while girls with ADHD tend to be inattentive. A small percentage of girls can be just as hyperactive as their male counterparts, he added.
“The majority of girls with ADHD actually fall through the cracks,” Wong said. “Identification tends to be later for women.”
Wong said girls with ADHD are often able to get through school with less difficulty than boys but face different challenges.
“They have problems paying attention. Problem listening to others, they have problem sitting still in meetings … they have difficulty organizing,” Wong said.
Wong said ADHD is more pervasive than people know, and that people with the disorder need more support.
He said in the past year he has seen 100 to 150 new adult patients and he expects that number to grow.
Island support group
When Boutilier finally found a psychologist on P.E.I. with time to see her, she was put on another waiting list, and said it was about four months before she saw someone.
Boutilier said she is now on medication for her ADHD and sees a therapist as often as she can.
What’s been even more valuable to her is a support group on the Island, she said.
“The ADHD support group has been so great because at least you get one place where people aren’t judging you and we can sort of just talk.”
ADHD P.E.I. has been meeting and listening to adult Islanders living with the disorder every Wednesday since September 2018.
About eight members regularly attend meetings and a handful of others drop by periodically said Sandy Slade, the group’s organizer and facilitator. He said the group is growing steadily.
“We’ve had five or six people expressed interest in the last month or two about coming in,” Slade said.
Boutilier was 43 when she was finally diagnosed last year with ADHD. She said while the road to diagnosis was long and at times frustrating, she’s happy and has hope for her future.
“I got meds and the support group and it is slow and it is still frustrating, but it’s moving forward,” she said, adding, “medication is not a silver bullet, it’s not going to fix your problems.”
Boutilier likens her mind before her diagnosis and treatment to a wall cluttered with television screens — she didn’t know which one to pay attention to. Now, with the help of medication and the support group, she said she’s able to zoom in and focus on just one screen.
When compared to other people with the disorder, she said she believes she’s one of the lucky ones.
“I had a successful career,” she said. “I think I’ve done better than most undiagnosed people will do.”
Boutilier switched careers. She was a veterinarian and is now a freelance illustrator, which she said better suits her.
“There’s certain things that are not ever going to be easy for me,” she said. “I’m feeling good, I’m feeling like I have the tools now and the knowledge to build a successful life for myself on my own terms.
“I feel like I’m alive again.”