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Pathfinders for Autism helps people with autism, families navigate diagnosis

autism
Credit: Unsplash/CC0 Public Domain

One of Rebecca Rienzi's favorite stories to tell about Pathfinders for Autism—the Baltimore County nonprofit where she has been executive director since 2010—happened at the National Aquarium in the Inner Harbor.

Every year, the organization rents out the aquarium to give people with autism and their families the chance to experience the facility without the sensory overload its noisy crowds usually would create. During one event, a child recently diagnosed with the developmental disability had a minor meltdown and started rolling on the floor. His mother was embarrassed, Rienzi recalled, and apologized profusely to a Pathfinders employee who was standing nearby.

"Take a breath and turn around," the employee told the mother, Rienzi said. "She turned around and looked at him, and everybody's walking past and they're stepping over him. Nobody's blaming, nobody's looking"

"It's like, 'Oh, I found my people,'" Rienzi continued. "It's a judgment-free zone, so that families can explore and learn new things."

Pathfinders for Autism has been providing that judgment-free zone for more than two decades. It was founded by Maryland parents of children with autism—including Baltimore Orioles Hall of Famer William "B.J." Surhoff and his wife Polly Winde Surhoff—who were frustrated about the lack of trustworthy information available about the disability.

The internet in the early 2000s didn't look anything like what it does today, Rienzi said. Instead, parents mostly shared information by word of mouth. Since Pathfinder's beginnings, the organization has provided a resource center where parents can learn to navigate their children's diagnosis. What started out as a "person on the phone" has grown to a website with a database of more than 3,000 organizations and service providers, Rienzi said.

The database includes adult psychologists who specialize in autism and adult day care programs, but it also features "basic life things," Rienzi said, like barbers who are experienced in cutting the hair of people with autism and where to shop for shoes or go to the dentist.

Today, Rienzi estimates that Pathfinders touches the lives of thousands of people every year—whether through adult social groups for people with autism, , the resource center or training sessions for , librarians, educators and others who interact with people who have the disability.

Still, from 9 a.m. to 3 p.m. every weekday, the organization has a parent manning the phones, ready to give advice. Trish Kane, Pathfinders' deputy director, is sometimes that parent. She often hears from parents who ask for advice about how to help their child be more independent, and from people who suspect they might have autism, who want tips on how to get a diagnosis.

Even though her son who has autism is 30 years old, Kane said she learns something new about the disability all the time through her job at Pathfinders.

"It's really been a wonderful opportunity," she said.

Pathfinders also values the experience of people with autism in guiding the organization's programming and helping to teach others about the disability, Rienzi said. The organization employs self-advocates, including Kane's son, Eric, to help with training sessions.

In training sessions, the self-advocates and their helpers tell participants about the basic symptoms of autism and communication styles some people with the disability may exhibit. For example, a health care worker may make an incorrect diagnosis or miss a when they don't understand that a patient with autism who seems like they are "lashing out" may be trying to tell them that their side is killing them, Kane said.

Miscommunication or misinterpretations of body language also may create dangerous situations when people with developmental disabilities encounter law enforcement. A police officer may think someone with autism is ignoring them or being noncompliant when they actually have language processing difficulties or are stimming—a way of self-regulating or coping with emotions that can include hand flapping, rocking back and forth, or making repetitive noises.

The self-advocates who help lead the training sessions are a vital part of the educational experience for law enforcement officers and , said Janelle Myers, a member of the organization's training team. Often, two people with autism yet different support needs help lead the training, introducing participants to a common refrain in the community: If you've met one person with autism, you've met one person with autism.

On a recent Wednesday morning, Myers drove to the nearly empty Towson Town Center to prepare for a training session with the Baltimore County Police Department. Her 33-year-old son, Glenn Myers, and 22-year-old Hunter McLaughlin—two self-advocates—joined her to help with the workshop.

"Every person with is different," said McLaughlin, whose mom, Shelly McLaughlin, program director at Pathfinders, helped him become involved with the training program. "Glenn and I both have it, but we couldn't be more different."

Myers and McLaughlin have different communication styles. Myers sometimes struggles with language processing skills, for example, but is a social butterfly who loves to give compliments and asks people upon meeting them if he can give them a hug. McLaughlin, on the other hand, isn't as talkative. As he puts it, "I'm not a big fan of big topics."

During training sessions, both men play to their strengths, Janelle Myers said. McLaughlin announces what each presentation slide is about—something Glenn Myers would find too boring—and Myers acts out a scenario at the start of each workshop, where he pretends to be lost.

With some help from his mom, Myers described why the are so important. He always tells officers that their safety is important, because if they aren't safe, they can't keep others safe, he said. And, with a smile, he added,

"I think the officers need the training to help my friends in the community."

2024 The Baltimore Sun. Distributed by Tribune Content Agency, LLC.

Citation: Pathfinders for Autism helps people with autism, families navigate diagnosis (2024, April 29) retrieved 16 June 2024 from https://medicalxpress.com/news/2024-04-pathfinders-autism-people-families-diagnosis.html
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