When Heather Murphy moved to Middleton from Texas, she worried she wouldn't find a community to welcome her daughter, who has special needs. Today, after participating in her first local autism awareness walk, she sees that the community is already there and its arms are wide open.
Some people talked to me and connected me with different families and relatives, Murphy said. I have high hopes and am very, very excited for the future of children with special needs here in The Villages.
Hosted by the Tri-County Autism Community, the third annual Autism Awareness Walk and Family Event was held Saturday at the Villages Polo Club. More than 300 local families, friends and supporters registered for the event, which also included fun festivities like balloon animals, bounce houses, face painting and a petting zoo.
The group and event were created by Lindsey and Bryn Blaise, who, after struggling to find an autism community for their son Boaz, decided to start one themselves. The event, which takes place on the second weekend of Autism Awareness Month, creates a space for autistic people and their families to get to know each other and form support networks.
Murphy and her 8-year-old daughter, Addison, were among the first to arrive. Addison, who spent most of the walk visiting with the others and introducing them to her doll named Hannah, is not autistic. She suffers from an extremely rare genetic syndrome called CTNNB1, a neurodevelopmental disorder that mimics aspects of cerebral palsy and autism.
At the time of Addison's diagnosis, there were approximately 80 other known cases worldwide. Since then, this number has increased to just over 400.
When she was diagnosed, I felt really alone and feeling isolated when you're a special needs mom is a little scary, Murphy said. I knew I had to have some sort of community.
Murphy and Addison moved into their new home in Middleton at the end of May. After attending the march and hearing news of The Villages Charter School working with the Tri-County Autism Community to create a school dedicated to students on the autism spectrum, Murphy is more sure than ever that they are in the right place .
Other families seeking connections included the Anton-Fischer family, who marched in support of 12-year-old Collin Anton.
Collin, who sported Pikachu makeup, was busy explaining the Godzilla x Kong cinematic universe for most of the walk. Her mother, Kim Fischer, followed closely.
When he was diagnosed, there were no resources in the area, said Fischer, a Summerfield resident. We're so lucky that (the Blaise family) have started to raise awareness about it, because it makes a big difference.
Like Murphy, Fischer is excited about the new charter school for autistic students. Even if Collin never attends the school, Fischer said the proximity and additional resources it could potentially provide would be invaluable to the local autism community. She said it would also give more families the opportunity to connect and support each other, just like the march does.
During the march, everyone pitched in to make sure no one was left behind or left behind. Parents and guardians helped each other when they could, often granting each other reprieve to carry, hold hands, and entertain the smallest walkers. Fischer said such support is part of what autistic people and their families mean when they say, “It takes community.”
“That’s the biggest thing I’ve learned over the years from him,” she said, pointing to Collin. You need to talk to people who have kids like yours, otherwise people would think you're crazy.
An estimated 1 in 36 children were identified as having autism spectrum disorder in 2020, according to the Centers for Disease Control and Preventions' Autism and Developmental Disabilities Surveillance Network. Many autistic children need special accommodations and resources that the average school is not equipped to provide.
Like the Blaises, Fischer hopes that if they continue to raise awareness about autism spectrum disorder, more services will be available in the area.
I think there's nothing like the community and the resources they have, Fischer said. In The Villages, they're doing things right, and I know that if they build the school, it won't be a little reconstituted high school, but it will be done with the same expectations as everything else.
Senior writer Taylor Strickland can be reached at 352-753-1119, ext. 20.5334, or [email protected].
