Autism in Kentucky: Moving Past Mystery, into Acceptance
April is World Autism Awareness Month. And as understanding of the disorder has increased in recent years, some advocates for people living with autism say greater acceptance is needed.
Executive director of the Kentucky Office of Autism, Amy Cooper-Puckett, said with many mysteries still to solve about autism and continuing controversy over its causes, some people view it in a negative light. But, she explained, within the self-advocacy community, the term "autistic" is embraced.
"Most of them don't view themselves through the medical model, which is deficit-based; they perceive themselves as autistic, and that that's not bad,” Cooper-Puckett said. “So, using the word 'acceptance' versus 'awareness' is an indicator that you're willing to accept them as they are."
An estimated one in 68 people nationally is on the autism spectrum - in Kentucky, it's about 69,000 people.
April 2 is World Autism Awareness Day, when businesses, schools and homes around the state will shine blue lights to recognize those with autism. And throughout the month, sensory-friendly events will also be held.
Cooper-Puckett said for parents, the acceptance issue is closely tied to the challenges in accessing services, and ensuring their child's strengths and capabilities are supported through their education and lifetime. She added it's crucial that treatment and therapies begin as soon as a child is diagnosed, which typically happens between ages three and five.
"The earlier that children can get into services, and parents can begin to learn the system and know the barriers and challenges, and how to communicate the challenges their child has to professionals treating them,” she said, “the better the child is going to be as far as accessing services."
The Kentucky Office of Autism works with many other organizations and agencies to improve supports for people with autism and their families. One particular policy piece Cooper-Puckett said she's especially proud of is House Bill 218, which would improve the state's autism insurance mandate.
"We've had that since 2010, but there needed be some updates - and one of those being removing the cap listed in the legislation on services. That's what House Bill 218 did,” she explained. “And hopefully, that will be signed and put into law by the governor as well."
She said other areas of current focus include creating connections for parents with children on the autism spectrum, and building self-advocacy groups for adults with autism.