Karen Two Shoes has learned a lesson in patience since her 5-year-old son Sam was diagnosed with Autism Spectrum Disorder (ASD) a year ago.
Staff at the Hollywood Preschool first noticed something a little different with Sam. After five months of testing, he was diagnosed with ASD and Two Shoes went looking for treatment.
The Tribe’s Children’s Center for Diagnostics and Therapy (CCDT), which sees individuals from infancy to age 21, offers help with ASD and other issues through a variety of services, including speech, occupational, physical and behavioral therapy. It also offers mental health counseling and psychological evaluations.
Children with ASD look like any other child but behave differently. According to the Centers for Disease Control and Prevention (CDC), the developmental disorder causes social, communication and behavioral challenges.
“It’s been a crazy and interesting year,” said Two Shoes, a Hollywood resident. “I’m less judgmental and my prioritizing changes daily.”
ASD affects about 1 in 68 children, but families, communities and schools are touched by the disorder as well. Five times more boys are affected than girls, according to the CDC.
Although no proven cause for ASD exists, scientists believe genes and the environment play important roles. Diagnoses of ASD have increased in recent years.
Occurrences of ASD among Tribal members compare with the general population. CCDT offers help through Autism in the Community, a support group led by clinical psychologist Dr. Kristen Bolomey.
“I’m here to provide information,” Bolomey said. “The goal is awareness and understanding so other members of the community can better understand and accept it.”
The group meets monthly in Big Cypress, Brighton and Hollywood to answer questions, address specific concerns and allow families a place to interact. At a recent meeting, Bolomey described the basics of the disorder.
Three characteristics are common in ASD: speech and language deficits, difficulty interacting with others, and repetitive play or the need for a strict routine. The ASD spectrum ranges from debilitating to barely detectable.
Cultural differences can also make a difference.
“Seminole kids are harder to diagnose if they are brought up in a traditional home where they are taught not to look someone in the eye or to speak,” Bolomey said.
Sensory Processing Disorder (SPD), such as extreme sensitivity to light or sound, is common. The sensory problems can occur in certain senses but usually not all of them. Almost all children with ASD have some degree of SPD. Bolomey offered examples.
“When you don’t know how to turn off the filter in your brain and can hear the hum of the fluorescent lights and everything else, you can’t pay attention to what you need and what you don’t,” she said. “It’s overwhelming and the child can’t always tell you what is going on. Parents have to be the detective so they can help their kids.”
According to the National Institute of Mental Health, ASD can be recognized before age 2. Bolomey said early detection is important.
“It’s key in helping them function more effectively,” she said. “One year of therapy at age 2 is worth more than years of therapy at older ages.”
ASD can lead to behavior problems, frustration and strained relationships, Bolomey said.
“Parents need to learn it doesn’t make you a bad person,” she said. “You didn’t do this to your children. You have to be kind to yourself and make time for yourself.”
Sam is in kindergarten at Boulevard Heights Elementary school in Hollywood, where they have an autism cluster. He receives help from a CCDT behavior analyst weekly.
“CCDT has been wonderful, but it’s also about being proactive,” Two Shoes said. “It’s about training us to work with him. You have to put aside your feelings and just take care of your child.”
Bolomey believes parents need to be their children’s advocates.
“You have to be proactive,” Two Shoes said. “It’s not going to fix itself.”