When Jackson Farmer was born in August 1994, first-time parents Kip and Maria Farmer were elated. But months before they celebrated Jackson’s first birthday, the couple couldn’t silence the nagging thought that something was wrong with their son.
Red-faced, the baby would cry for hours as his parents strapped him into a car seat and drove around Evansville, trying to calm him. He was angry, anxious, and inconsolable, and the Farmers didn’t know why.
At age 2, Jackson was diagnosed with autism, a developmental disorder that affects his ability to communicate and interact with other people. The news blindsided his parents, who knew little about autism and virtually nothing about raising a child with the disorder. “We didn’t know where to go,” says Kip Farmer, an Evansville interior designer who owns the firm Kip Farmer Design. “We were knocking on so many doors at a time when we still were reeling from the diagnosis.”
The couple felt isolated and overwhelmed as they called hospitals, schools, and nonprofit organizations seeking help for Jackson. More than a decade later, Farmer reasons that maybe, if they could have browsed one website or called one phone number to learn about regional autism resources, the learning curve may have been that much gentler.
The desire to create a one-stop resource for families dealing with autism led to the formation of the Evansville Regional Autism Coalition (ERAC), founded during the national Autism Awareness Month in April 2008. The organization recently changed the word “Coalition” to “Community,” reflecting a shift from a professional association to a group that welcomes families. This October, ERAC prepares to host its first major event: the Autism, Asperger’s and Social Skills Conference, featuring professor and animal scientist Temple Grandin and autism expert Jed Baker.
“(Autism) is an emerging crisis,” says Farmer. “The time is now.” (The Farmers also have two boys, ages 13 and 10, who do not have autism; Evansville Living profiled the family when Jackson was 8 in “Especially Needed,” January/February 2003). When Jackson was diagnosed 14 years ago, the Farmers learned their son was one in 2,000 children with the developmental disability. Now, the Centers for Disease Control and Prevention estimate that autism spectrum disorders (ASDs) affect one in 110 children, and they’re four times more likely to occur in boys than in girls.
ASDs range from Asperger’s syndrome, characterized by social awkwardness and fixations on narrow topics, to severe autism, often marked by behavioral problems and a complete inability to communicate. There is no cure, and no one knows what causes the disorder.
Before ERAC, “there wasn’t anything happening for autism in a big way,” Farmer says. He and three community-minded friends — Cindi Beeler, Lisa Jones, and Patricia Weinzapfel — wanted to change that, and together they launched the coalition. Its purpose is to educate families and the community about autism spectrum disorders while connecting them with resources — whether it’s a speech therapist, a patient photographer willing to take family photos, or another local family facing autism. They brought various skills to the task: “Cindi’s the consummate event planner and organizer. Lisa is a great researcher and communicator,” says Farmer. “And Patricia is the extrovert, the PR link — not just to the media but to the public.”[pagebreak]
The ERAC launch committee came together around the idea that local agencies could benefit from discussing their challenges and successes. “We had a lot of organizations doing incredible things for families with autism,” Weinzapfel says. “What we didn’t have was a way they could talk together.” For a year and a half, ERAC has hosted monthly meetings that unite leaders of more than 20 agencies, including nonprofit organizations, health systems, school corporations, and universities.
The coalition also raises awareness of autism with events such as an Aug. 3 Web conference with Eustacia Cutler, Temple Grandin’s mother. That day, people nationwide watched Cutler speak from Washington State University. Approximately 80 Evansvillians — healthcare workers, therapists, caregivers, and relatives — tuned in from the Crescent Room at Milestones to hear Cutler’s take on raising a child with autism.
Her insights were inspiring yet disturbing. The 83-year-old Cutler recalled the days when many psychiatrists believed autism was caused by “refrigerator mothers” who were cold and distant. (The theory prevailed through the 1970s, and Grandin, who didn’t speak until age 4 and threw frequent tantrums, initially was thought to have brain damage, epilepsy, or mental retardation.) Cutler felt judged by her neighbors and even her husband after Grandin’s diagnosis, but at a time when children with autism frequently were committed to institutions, Cutler fought to keep her daughter in mainstream schools.
Her candid reflections resonated with the local audience, and the webinar was a prelude for Grandin’s appearance in Evansville. Grandin, the subject of an HBO biopic nominated for 15 Emmy Awards, has autism. She also has a doctoral degree, has authored or co-written more than half a dozen books, and has redesigned many of the nation’s livestock handling facilities to be more humane and efficient. Grandin, named to Time Magazine’s 2010 list of the world’s most influential people, often is recognized as the first person to tell the general public what it’s like to live with autism. (“I live by concrete rules instead of abstract beliefs,” she wrote in a commentary that aired on NPR’s This I Believe in 2006. “And because I have autism, I think in pictures and sounds.”)
Before HBO’s Temple Grandin, starring Claire Danes, premiered in February, ERAC had planned to bring the high-profile speaker to Evansville. “I’m a former reporter,” Weinzapfel says, “so I have this mindset: ‘Why can’t I call someone?’” She tracked down Grandin’s administrative assistant at Colorado State University (where Grandin teaches in the animal sciences department), sent an e-mail, and soon received a voicemail from Grandin. Weinzapfel admits she was starstruck: “She’s like a rock star in the field of autism,” she says. “One of our goals is to bring awareness to the challenges families face. Who better to do that?”
ERAC leaders hope to make the fall conference an annual event. Also ahead for the coalition: updates to its website (www.evansvilleautism.org), which launched in 2009. The goal isn’t to provide the Internet’s definitive source of autism information. It’s to be “the inside track that’s local and specific,” Farmer says. Currently, the volunteer-built website includes features such as a directory of local service providers, ranging from adult day services to dietary counseling to recreation opportunities. Farmer envisions the site expanding to include a timeline of ages and services in the area. A 4-year-old with Asperger’s syndrome, for example, has different needs than Jackson Farmer, a 16-year-old with severe autism who attends a residential school in Indianapolis.
ERAC also plans to establish an online message board to connect Evansville-area families coping with ASDs. While nothing can eliminate the fear that accompanies an autism diagnosis, connecting with others just may comfort the families struggling with monumental daily challenges. “It’s not about having all the answers,” says Farmer. “It’s about talking to someone who’s been there.”
To learn more about the Evansville Regional Autism Community or register for Oct. 1’s conference featuring Temple Grandin and Jed Baker, visit www.evansvilleautism.org.
