Advocating autism awareness

Young students release blue balloons in recognition of Autism Awareness month during an event Wednesday at the Missouri Department of Health and Senior Services.
Young students release blue balloons in recognition of Autism Awareness month during an event Wednesday at the Missouri Department of Health and Senior Services.

Chris Alfaro, a 22-year-old Jefferson City man with autism, shook the hand of Julie Herigon on Thursday after she delivered a heartfelt speech about her 4-year-old son, Grady, who has autism, concluding an awareness event. With two simple sentences, Alfaro assured the mother she had support as Grady grows up.

"You're not alone," he said. "You're never going to be alone."

More than a hundred people wearing blue - the color for autism awareness - gathered at the Missouri Department of Health and Senior Services to hear from autism experts and families who shared personal testimonies. Herigon said she and her husband, Shawn, noticed Grady's delays starting when he was one year old. He hadn't started walking yet, unlike her two older children.

He cooed like babies usually do, but wasn't saying any words by age two. Not mommy or daddy, nor mama or papa.

"There is nothing more heartbreaking than sitting there and saying, "Please say, mommy; Please say, mommy, and it never comes," Herigon said.

A team at Thompsen Center for Autism in Columbia diagnosed Grady with non-verbal, low-moderate autism. The Herigon couple was asked how they felt after hearing the news, and Julie Herigon said she wasn't shocked.

"My husband probably gave the best answer, and he said, "We just want a diagnosis, so we can get help for our son. He's still our son and we will always love him because of who he is.' That's where our journey started," she said.

At three years old, Grady started attending the Special Learning Center in Jefferson City, where he has learned to identify colors, numbers and some letters. Now, he calls for his mother, father, grandparents and his brother, Grant, and sister, Grace.

"An autism diagnosis is not an end," Herigon said. "It's truly a beginning. It's the beginning of seeing the world from a new perspective - the big brown eyes of my little boy, who I know is going to do amazing things in this world."

Individuals with autism who are entering adulthood face obstacles, said Danielle Schwartz, director of Day Solutions, Inc., a learning facility for adults with developmental disorders. Two years after high school students with autism graduate, 66 adults go unemployed and 25 percent are socially isolated, she said.

Since its establishment a year ago, the Jefferson City-based facility has taught a variety of skills to its five clients with autism. They've learned daily life skills, like vacuuming and doing the laundry, and social skills. Clients improve their basic functional communication, Schwartz said, and learn through its literacy program. It's all designed for them to be as independent as possible.

"We understand that when a child grows up and graduates from high school, the need for services does not disappear," she said.

Peter Lyskowski, director of the Department of Health and Senior Services, said the state could put additional funding toward autism efforts if the Missouri Legislature approves Gov. Jay Nixon's proposal to add $5 million to the Thompsen Center and $1 million for a new autism center in Kirksville at Truman State University.

In the meantime, it's up to local communities to support resources and learning facilities, like the Special Learning Center and Day Solutions, he said.

"These precious people need our help, our support. Their families need our support," Lyskowski said. "I want this to be about more than just awareness, I want it to be about acceptance and it needs to go to action. We do so much to be aware of things ... but autism awareness is different, because with autism awareness, there's something each and every one of us can and should do to support the famillies that are struggling with these challenges and the institutions who provide them the much needed treatment."

Jena Randolph, Train Experts in Autism for Missouri project director at the Thompsen Center, said two domains are assessed when diagnosing autism. Medical professionals look at social-communication deficits, from lack of any verbal skills to problems understanding social context in various situations, and repetitive behaviors, repeating patterns or behaviors.

Changes to a schedule or routine can irritate in an individual with autism, Randolph said. That can lead to what others may classify as a tantrum, but the behavior is a reflection of distress. On-lookers shouldn't stare and point, she said, they should offer a helping hand.

"The most important thing we can do as a community is when you see that, don't be judgmental of it," she said. "Instead, smile at the parent who is there and already uncomfortable. Ask them, "Is there anything I can do support you? Is there anything I can do to help you?' Give a nonjudgmental olive branch to say - "What can I do for you?' - can go a long way."

For those facing challenges with autism, Alfaro give this advice: speak up, hang in there and do what's right.

"It's time to listen," he said. "Autism speaks, it's time to listen."