Jodi Perrott discovered she had attention deficit hyperactivity disorder (ADHD) when her teenage daughter was diagnosed three years ago.
"I had never considered my perfectly behaved A-plus daughter could ever have ADHD. To me, it was a behaviour disorder," Perrott remembers.
"I was astonished to find out that she had it, and even more so to find out that I was the one who gave it to her."
According to the Centre for ADHD Awareness Canada, the disorder affects anywhere from five to nine per cent of children and three to five per cent of adults and is considered highly hereditary.
Now Perrott, who works with ADHD Edmonton, a non-profit association providing resources and support for a growing community of Albertans with the disorder, wants to help others.
A shift in thinking
ADHD Edmonton started in 2009 after founder Rachel Rogers was diagnosed in her 50s and found no local community support network.
"I had been working as a teacher, school counsellor for many years," Rogers said. "I thought I knew a fair amount. After diagnosis I realized I know very little."
The local organization offers support groups, professional advisers and resources.
"There's an incredible need," Rogers says.
Justin Lessard, a counsellor who specializes in ADHD and is a co-founder of 9 Circle Therapy in Edmonton, told CBC's Radio Active that conversations about the disorder are shifting.
"It's a pretty complex disorder, and that's coming more to light with people on TikTok and Instagram sharing their experience. There's kind of a resurgence of adults with ADHD and more [people] having ADHD than we originally suspected."
'We are not a monolith'
"There's a narrative in our Western culture of what ADHD is and what it looks like," said Lessard.
The usual picture is often a young boy with an excess of energy who can't focus . But for young girls, ADHD can mean zoning out, which is harder to catch in the classroom.
This is one answer to why women are often diagnosed later in life.
"We present differently. We internalize more. We have more depression, anxiety," Perrott said. "We are not a monolith."
There are three types of ADHD: inattentive/distractible, impulsive/hyperactive and a combination of the two.
Lessard began his own research on the disorder during graduate studies, when his wife's ADHD was first recognized.
"We were both learning about her diagnosis together, and then clinically I was like, this is so much bigger and more common than a lot of people are leading on," he said.
Lessard believes that some people may be treated for other mental health challenges, while the root is neurodivergence.
"People are like well, it's just anxiety. It's a depressive disorder," he said. Sometimes "anxiety and depression are the smoke and ADHD is the fire."
Creating a community for change
To get her diagnosis, Perrott paid about $3,000 for a test. She spends around $150 each month on medication, on top of what her insurance covers.
"I am a firm believer that we shouldn't have to pay for our own diagnosis," she said. "We have a neurological disorder that needs treatment, and we need better access to it."
ADHD Edmonton recently added a women's adult support group to its roster. In its first two sessions, it has been the organization's most attended meeting.
Perrott, who spearheaded the group, said it was a big moment for many attendees.
"You spend your life trying to pretend you're normal. And then suddenly you're in a room with 20 other people who are exactly like you, weird in the same ways you're weird, struggling with things you're struggling with," she said.
"You feel like you belong and it's such a relief."