AYER -- Every year since 2007, autism organizations around the world have celebrated World Autism Awareness Day on April 2, with unique fundraising and awareness-raising events.
Autism is a general term used to describe a group of complex developmental brain disorders, known as autism spectrum disorders, caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors.
An estimated one in 88 children in the U.S. is on the autism spectrum -- a 1,000 percent increase in the past 40 years that is only partly explained by improvements in diagnosis, according to the U.S. Centers for Disease Control.
That is more than the number of (American) children diagnosed with cancer, juvenile diabetes, and AIDS combined," said sixth-grader Shannon Mountford, whose twin brother Liam has been diagnosed with autism.
Reactions to children with autism
When Shannon and her brother began attending Lura A. White Elementary School in Shirley more than two years ago, Shannon became distressed that some of her fellow students' reactions to her brother seemed mocking.
Her first response was to break down into tears, she said, but she soon realized that her fellow students simply did not understand why Liam was different. They were fascinated with some of his skills, such as being able to name all of the U.S. presidents, and encouraged him to exhibit behaviors that they viewed as peculiar.
"People who are not aware of (autism), they don't know right from wrong. They may take what they say in a joking way, but I don't because it's my brother," said Mountford.
If he does something unusual they will laugh, and he likes to make them laugh, so he will keep doing it. And if he is doing one thing and people don't know what is going on with him, they may say something wrong."
Last year, when Mountford and her brother were in fifth grade, she and her mother, Peggy Craig, asked LAW Principal Patricia Fitzgerald if they could do something at the school for Autism Awareness Day.
Fitzgerald said that she brainstormed with mother and daughter to figure out what they could do, and came up with autism awareness posters, a display in the front lobby, and a presentation by Shannon and her mother for the entire fifth grade.
The kids made posters in the after-school program and hung them around the school. We all wore blue (on April 2) for autism awareness," said Fitzgerald.
We had a wonderful meeting and all of the fifth grade students were there," she added. "It was instructional and the kids asked a lot of great questions."
"That's when I discovered that Shannon knew more about autism than I realized," said Craig.
The start of a new venture
The following summer, Shannon and her friend Deanna Lunardo, who attend Ayer Shirley Regional Middle School, decided to work on forming a United Way Youth Venture team called the Blue Crew to raise funds for the Autism Resource Center in West Boylston, which Craig said has helped her immensely.
Youth Venture is a youth-led program that uses adults as guides to encourage student participants to think about ways to improve their community. After identifying an idea, students form a group of their peers, develop a business plan, and make their case before a community board for seed money to launch their venture.
Mountford said that Tyler Sweeney, a volunteer for the AmeriCorps Job Ready program, helped them with their action plan and presentation in front of a mock panel, before the Blue Crew addressed its formal community panel in February.
During their slide presentation before the panel, the twosome presented their goals to: spread autism awareness; recruit fifth-graders coming to the middle school to join their venture; have their community "light it up blue" on April 2 with blue light bulbs to show support for autism; have at least 100 ASRMS students and faculty wear blue that day; and, spread the word that April is National Autism Awareness Month.
Other members of the Blue Crew who are helping the team meet its year-round goals are Hannah Keesee, Casey Megan, Meghan Harding, Carissa Cantwell, Peter Bryant, Steven Lawton, and Alex Scheufele.
"We were asking for $176 for blue lights, blue ribbons, and magnets to give out at our car washes," Mountford said. The panel awarded the team, made up of a total of 10 students, twice as much seed money as they had asked for.
Since then, Lunardo and Mountford have been hand making stickers and bookmarks, which they sell during their lunch period at the school. Many of their designs include a puzzle piece, the universal symbol for autism that reflects the mystery and complexity of the autism spectrum. They also feature the color blue, which is the color most often used to show support for autism awareness during the month of April.
"We also do bake sales. We did a bake sale on Dec. 31 in front of M&M Convenience in Shirley, and made $189.06," said Lunardo.
I am great!
At the middle school, Liam is learning how to interact with others via Applied Behavior Analysis, which also helps him to learn how to learn concepts and ideas in the same way as his peers so that he can learn to function better in a traditional classroom setting.
"Applied behavior analysis is pretty much the thing to do with children with autism," said his mother.
Now I'm back at school to get my degree in early childhood education. Hopefully, I will go on to get my bachelors to be a director for preschool, but my ultimate goal is to teach children on the spectrum," she said.
Meanwhile, the Blue Crew is continuing to raise awareness about autism, and Liam has adjusted well to his new school. He also continues to participate in Nashoba Valley Unlimited Baseball and Basketball, a program for students with special needs who are partnered with coaches and buddies from Ayer Parks and Recreation and Ayer Shirley Regional Middle and High School sports teams.
Said Craig, "This past season, they were playing a basketball game three-on-three, and the people in the stands--the seventh- and eighth-graders--were chanting his name, and at the end of the game they lifted him on their shoulders. Afterward, he said, 'I am great!'"