Shining a light on invisible differences

By Stephanie Choate

Observer staff

For those living with invisible conditions like autism and Asperger’s Syndrome, the lack of any outward sign of their differences can lead to snap judgments and isolation.

Williston eighth grader Bia Mele said she thinks and learns differently from her fellow students. Some peers—and adults—can be mean or rude without intending to be, and she attributed it to a lack of awareness.

“They treat me like I’m stupid, and the thing is, I’m not stupid,” she said. “People that are different, they treat them like aliens, I guess. They don’t get that we have the same wants and feelings and emotions and expressions as everyone else…. That’s what really frustrates me. Just because I think differently doesn’t mean I’m not human, it doesn’t mean I’m stupid and it sure as heck doesn’t mean I don’t feel rejection.”

Bia’s mother, Lori Mele, is working to bring awareness to those invisible conditions, developing a program to present to middle school students across the state.

Mele, whose three children fall on the autism spectrum, said the painful experience of watching her children, especially her daughter, endure isolation and judgment, motivated her to develop the program

“We don’t talk about invisible conditions,” she said. “We need to start the conversation and it needs to be continuous…. (Bia) really is the fire in my belly to get this started and off the ground but not just for her any longer, of course, but to represent every child that has had to endure this.”

And there are many of those children. According to Autism Speaks, one in 68 children in the United States falls on the autism spectrum. Vermont Family Network served 29 Williston families with children with special needs between June 2013 and July 2014.

Mele began working with the Williston school system to bring more awareness to invisible conditions like autism—and said the school took her experiences and her work seriously.

Now, Mele’s workplace, Vermont Family Network, has brought her grassroots program under its umbrella and is helping her develop it. The ultimate goal is to offer the program, called AUTEA, to schools statewide.

Raising three children who are on the spectrum—all of whom are high-functioning and brilliant, she said, though they learn differently from other students—gives Mele first-hand experience and feedback on AUTEA.

Vermont Family Network President and CEO Pam McCarthy said Mele’s program fits in with the network’s mission to empower and support all Vermont families of children with special needs, as well as its methods of being family-driven and family-directed.

Mele has begun reaching out to schools statewide, and is already getting interest, she said.

AUTEA, which stands for Awareness Understanding Tolerance Education Acceptance, aims to promote a positive school climate by teaching acceptance of differences.

“Nobody’s done anything like this until now,” Mele said.

Mele and McCarthy plan to grow the program around autism and Asperger’s first, perfecting and honing it. They hope to eventually develop presentations for other types of invisible conditions and illnesses, such as depression and anxiety.

“Lori has the passion and knowledge. We want to see this be successful out of the gate, so we’re starting small and mighty,” McCarthy said. “We’re hoping to create a lot of demand for understanding other specific types of invisible illnesses.”

Mele said many anti-bullying campaigns focus on telling students what not to do, but she takes a different route.

“My perspective is, let’s stop telling them what they shouldn’t do and asking them what they can do, really getting to the root,” she said. “The root is having a deeper understanding that we’re all different and it’s OK to be different… (AUTEA is) based completely on the positive, challenging the kids on what they can do.”

She said she tries to engage students and show them that everyone has challenges.

“The one thing we all really want is to be liked and accepted for who we are,” Mele said.

The presentation is geared toward middle school students.

“In elementary school, they’re still pretty accepting and high school they’re starting to carve their own path. Middle school is really where the stigma and the judgment sets in,” Mele said. “A big part of that is a lack of awareness and understanding.”

She typically starts her presentations by asking if anyone in the room knows anyone with Asperger’s or autism—and students often do.

Mele also shows a video created by a professional surfer with Asperger’s, and talks about celebrities and historical figures with Asperger’s or autism.

She also walks through some things students can do to include their fellow students with invisible differences. Often, it’s as simple as saying hi in the hallway, or inviting someone to sit at lunch with you. She also said those students may say no, since they need some space to process their surroundings, and that’s OK, too.

“It’s engaging, it’s hip. I feel that I have the ability to really engage the audience and make it interactive, really kicking it up a notch from what other past presentations have done,” she said. “I feel very confident that we are really tapping into some good things.”

Carter Smith, director of special education at Williston Central School, said students responded “very well” to Mele’s presentation. He said the school has a history of including students with disabilities, but that the presentation offered a new viewpoint.

“The point that really hit home I think for the students was the fact that there are a number of students who don’t look like they have a disability, but they have emotional or cognitive challenges,” he said. “It was a good message for students.”

In a testimonial about the program, retired Williston Central School counselor Carol Bick praised Mele’s approach, saying it showed students and adults what it is like to be on the autism spectrum.

“With understanding came empathy, which resulted in friendships being forged and discrimination being decreased,” she wrote.

Bia Mele said she saw a difference after her mother’s presentation.

“For other kids, it was very eye-opening,” she said. “We see a lot of people in the media known for their uniqueness or their boldness, and we look up to some of them and yet in our daily lives most people kind of reject those people who are extraordinary or different or very opinionated or bold or eccentric.”

Bia said AUTEA helps students understand how those on the spectrum think and feel—and that everyone shares some of the same feelings.

“When people have the opportunity to understand and have more awareness about it instead of ignorance, I think they have more tolerance and they can be more accepting, instead of being rude because they don’t understand,” Bia said. “It’s time to change that. It’s really time to grow up and change that as a community, as a society, as a nation, as the world. If everyone just learned more and were less ignorant it would really help.”

Mele said that beyond creating a supportive school environment, more awareness around invisible differences will help students navigate their lives beyond school.

“Most likely in their lifetime, they will have a friend, a neighbor, a family member, a boyfriend whose sister has a disability or difference of some sort,” she said. “This is so important for them to know, because it is going to affect them on some level at some point in their life. How lucky for them to have had the opportunity to learn these things early on.”