'My mind was a dog untrained': P.E.I. woman finds hope with late-in-life ADHD diagnosis

Around Christmaslast year,Pam Boutiliersays she was feeling fed up and "desperate."

The 44-year-old from Charlottetown recallsspending two days combing through a list of P.E.I. psychologistsshe had found online. She suspected she might have attention deficit hyperactivity disorder, and was looking for someone who specialized in it, searching for relief.

People do not grow out of it. Dr. Ainslie Gray

"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 saidshe's been on thewaiting listfor more than two years.

Staying organized and on task has never been easy for Boutilier. What many take for granted as quicktasks or errands stretch into hours-longor 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 ondifferent 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 seektreatment.

"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," Boutiliersaid.

'Alifelong condition'

More people are being diagnosed with ADHD later in life, saidDr. Ainslie Gray. She treats adults withthe disorder at the Springboard Clinic in Toronto, which diagnoses and treats both children and adults with ADHD.

She noted that about65 per cent of patients Springboardassessesnow are people 18 and over.

ADHD is one of the mostcommon psychiatric diagnoses in childrenin Canada, Graysaid, andaffects about five per cent of Canadians halfmale 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 arealso 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, ADHDis 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 difficultieswith focus and attention, Gray saida challenge for those with ADHD is the stigma associated with it that people with undiagnosed ADHDare 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," saidGray. "They may never think that ADHD is a potential."

Women especially tend to blamethemselves,she said.

The majority of girls with ADHDactually fall through the cracks.Dr. David Wong

ADHD can be diagnosed by eitherpsychologists who administerpsycho-educational assessments that look at a patient's learning skills and potential deficit, Gray explained, or by physicians who takepatients throughquestionnaires.

At Springboard, assessments take about half a day and include input from a psychologist, a medical doctor and a coach-therapist, she said, and includepatients 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.

Boutilierrecalls being perceived as a lazy, dreamychild with a cluttered bedroom floor.

"The messaging was really morethat it was all my fault, if I would justtry harder. And I really believed that for a very long time," she said.

But she wasa 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 forgirls

The way the disorder presents can be different for females than it is for males, which can lead to delayed diagnosis for womensaidDr. 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 childrenand saidhe made the full transition to specializing in the disorder in adults about three months ago.

The ADHDsupport group has been so great because at least you get one place where people aren't judging you.Pam Boutilier

Wong said his desire to specialize in ADHDcomesfrom watching a family member suffer from it theirwhole life, which he said hasbeen difficult to witness.

"Boys are more likely hyperactive and disruptive and to get into trouble in school," Wong said, whilegirls with ADHD tend to be inattentive. Asmall percentage of girlscan be just as hyperactive as their male counterparts, he added.

"The majority of girls with ADHDactually fall through the cracks," Wong said."Identification tends to be later for women."

Wong saidgirls with ADHD are often able to get through school with less difficulty than boys butface different challenges.

"They have problems paying attention. Problemlistening to others, they have problem sitting still in meetings ... they have difficulty organizing," Wong said.

Wong saidADHDis more pervasive than people know, and that people with the disorder need more support.

He saidin the past yearhe has seen 100 to 150 new adult patients and he expects that number togrow.

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, andsaid it was about four months before she saw someone.

Boutiliersaid 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 ADHDsupport 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 andlisteningto adult Islanders living with the disorder every Wednesday since September 2018.

About eight members regularly attend meetingsanda handful of othersdrop by periodicallysaidSandy Slade, the group's organizer and facilitator. He saidthe group is growing steadily.

"We've hadfive or six peopleexpressed interest in the last month or two about coming in," Slade said.

'Moving forward'

Boutilier was 43when she was finally diagnosed last year with ADHD. She said whilethe road to diagnosis was long and at times frustrating, she's happy and hashope for herfuture.

"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 ofmedication and the support group, she said she's able to zoom in and focus onjust one screen.

When compared to other people with the disorder, she saidshe believes she'sone 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 veterinarianand is now a freelance illustrator, which she saidbetter 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 Ihave the tools now and the knowledge to build a successful life for myself on my own terms.

"I feel like I'm alive again."

More P.E.I. news