For young people with ADHD, it's 'just part of the human condition'

Meredith Willse
York Dispatch

For Heather Aldons, there is no question that her daughter Alisyn Noel will change the world.

In the third grade, the New Oxford girl organized a food drive that helped feed 27 families. All Aldons had to do was drive her now-15-year-old daughter to the pick-up and drop-off points. Young Noel did the rest.

"She is amazing," the proud mother said, calling her daughter a "little humanitarian."

Noel is also one of the estimated 3.3 million American teenagers — a full 13% of all children between the ages of 12 and 17, according to the Centers for Disease Control and Prevention — who've been diagnosed with attention-deficit/hyperactivity disorder, or ADHD.

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Like so many of these young people, the path toward a diagnosis and ultimate treatment was a long and winding one.

From a young age, pediatricians had at various times diagnosed Noel with Asperger's syndrome, autism, bipolar disorder and other conditions. All the while, Aldons said she never thought these pronouncements fit.

Aldons recalls her daughter telling her, "I am not on the spectrum. I don’t care what they say." Noel was afraid of losing friends, her mother said.

Noel, who dreams of joining the military or becoming a criminal psychologist profiler, recently wrapped up her second week on ADHD medication and is already doing better. Before the medication, Noel couldn't finish two tasks, but now she can do four or five before needing a break.

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ADHD is a difficult condition to diagnose because of the ways its symptoms — constant fidgeting, inability to concentrate and excessive talking — can mirror those of many others, as well as the fairly common behavior of school-age children.

Further complicating the matter is the stigma surrounding an ADHD diagnosis.

WellSpan psychologist Hana Longenecker said it's important to remember that people with ADHD and other neurodivergent conditions see the world differently — and that their outlooks on the world come with unique strengths, too. They can be creative problem-solvers because of that, she said, a trait that's useful even in adulthood.

'Hard for me to remember': Leann Firestone, 32, of New Cumberland, struggles with schedules. She was diagnosed with ADHD while attending Harrisburg Area Community College when her parents took a step back and her symptoms became obvious. She struggles with activities such as scheduling.

“It’s not easy for me to remember to clean my house or brush my teeth or do my laundry,” she said.

Will, Leann, and Fiona Firestone in New Cumberland on Friday, Oct. 21, 2022.

For other people, these tasks are routine, but Firestone struggled to manage those activities over the years. She learned what schedule and routine worked best for her, which included body doubling, a motivational technique that involves having someone else work simultaneously, either in the same room or virtually. Even with these techniques and medication, scheduling is still a struggle − including trying to get a refill on her Adderall prescription. Because Adderall is a controlled substance, Firestone has to perfectly time her monthly refill call to coincide with the end of the previous one or it will get flagged.

And it won't get any easier.

Medication shortage: Last month, the U.S. Food and Drug Administration announced an Adderall shortage due to supply chain issues. Teva Pharmaceuticals, which sells the most Adderall in the nation, is expected to recover this month — but other manufacturers’ timelines vary.

In addition to her own work managing the condition, Firestone's 6-year-old daughter Fiona was diagnosed this year with ADHD.

"Parenting looks a little different when you have ADHD, for sure,” she said. “And having a child with ADHD complicates the two.”

Finding services for Fiona is difficult, Firestone said. The mom put Fiona on a waiting list in February with Penn State to get a diagnosis. Penn State told her in July it would be another six to eight months. Firestone took Fiona to her psychologist for an evaluation before the child started kindergarten through Commonwealth Charter Academy, one of the state’s largest public cyber charter schools.

Will, Leann, and Fiona Firestone in New Cumberland on Friday, Oct. 21, 2022.

Longenecker agreed there isn't a lot of availability in the area and parents often have to be outspoken advocates in seeking treatment.

“You don’t outgrow your brain,” said Julie Rasmuson, director of student accessibility services at York College of Pennsylvania. “This is just part of the human condition.”

Diagnosis difficulties: Rasmuson said it's difficult to get diagnosed now because there is a significant lack of services, especially since the COVID-19 pandemic left many medical and social service agencies with long wait lists for patients. Many primary care doctors start the diagnosis process, but such patients often need to see specialists who are in high demand, she said.

Rasmuson said there needs to be more inclusive spaces to make this a better world. She also pointed out social media is also hoping people share their own experiences, which can help people listen and become better allies.

Alisyn Noel got good grades, her mother said, but needed a distraction to stay seated — which was the only real complaint from her teachers.

“She helped a lot of kids, which is fantastic, but she would get in trouble,” Aldons said, explaining teachers didn't like it — for example — when Noel would get up and help classmates during the middle of a test.

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TikTok an outlet: Like many teens, TikTok became an outlet for Noel — and a means of understanding her experience.

“The moment you get a diagnosis, you’re different, right,” Aldons said. “Even if nobody else says it, you’re going to feel different because it was given to you that was a label that is handed to you.”

Joelle Jones, a University of Pittsburgh Medical Center clinical social worker, said TikTok is good because it can help connect teens and children, like Noel, and let them feel more empowered.

Children are egocentric, Jones said, believing they are alone in their experiences — and the app helps them overcome that feeling.

“This is not going to plague you forever,” she tells her younger patients about handling their symptoms.

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TikTok creators shared their experiences and taught their viewers how to advocate for themselves. They also teach that just because they were diagnosed with something, it doesn't mean they are any different than the day before the diagnosis.

The app is a good first step to getting a diagnosis, Longenecker said, but it is more of an educational tool. The next step is to get an official diagnosis because sometimes the self-diagnosis is incorrect. Just because there are ADHD symptoms doesn’t mean it is the only answer, she said.

Longenecker added Tiktok can teach coping skills, and if those skills help, the patients should use them. One user she recommends, "domesticblisters", is a therapist who has ADHD and depression. The user posts videos regularly on how she handles tasks such as laundry, which can overwhelm her. Instead, the user made a big family closet.

Support network: In response to the lack of services, Firestone is creating a nonprofit, Neurodiverse Network, to help neurodivergent brains and their caregivers by sharing information about doctors who can help, tips and educational resources. https://linktr.ee/neurodiversenetwork She wants the center to be used as a model for others in the future to help neurotypical, neurodivergent brains and LGBT members.

The network began in July as a nonprofit organization and is still growing. It currently offers support groups while Firestone meets with potential sponsors and other groups. The scheduling part of building her nonprofit taxes her, but she wants to build a better future and enjoys working toward it.

— Reach Meredith Willse at mwillse@yorkdispatch.com or on Twitter at @MeredithWillse.

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