Mother advocates for children on the spectrum
Kimilee Bryant has found surprises and unexpected joys in motherhood, along with challenges that have taught her to advocate for her son. Aidan, age 5, was diagnosed with autism shortly after his second birthday.
“Aidan looks typical in most pictures, when I can get him to look at the camera,” Bryant said. “That’s autism – there’s nothing you can look at and see.”
Perhaps it is the increase in public awareness about autism spectrum disorders, or the fact that one in 59 children are diagnosed with ASD, but Bryant said people are generally understanding.
“I have found mostly support and tolerance,” she said.
Getting a diagnosis and then the greater challenge of getting Aidan the services he needs, proved to be more difficult.
At around 15 months, Aidan’s pediatrician asked about his speech.
“He wasn’t really speaking,” Bryant said. “He walked early.”
At 18 months, the pediatrician gave Bryant information about BabyNet, South Carolina’s early intervention system for children younger than 3 years of age who have developmental delays.
By the time Aidan was seeing therapists from BabyNet, at around 20 months of age, Bryant was noticing a lack of eye contact, in addition to the lack of speech. He has some repetitive behaviors, and some sensory issues as well. Early intervention for Aidan involved occupational therapy, speech therapy and applied behavioral analysis (ABA) therapy, but Bryant has seen firsthand the challenges of dealing with delays in receiving those services. At one point early on, Aidan was prescribed 40 hours per week of ABA therapy and was receiving only one hour per week. South Carolinians face several barriers in receiving ABA therapy, notably a Medicaid payment rate that, while recently increased, is still lower than other states.
Aidan is now a student at HOPE Academy, part of the nonprofit Project HOPE Foundation that provides a lifespan of services for the autism community. He is growing and changing and yes, he continues to surprise his mother. Aidan’s verbal skills are increasing and he has shown a knack for foreign languages, picking up some French, Spanish and German from videos.
Susan Sachs, Co-Founder and Executive Director of Project HOPE Foundation and the mother of an adult child with ASD, said no child should have to wait for services.
“We know that outcomes increase significantly when we can begin those services before age 3,” she said. “The key is early intervention.”
Sachs said it is still a challenge for children to get ABA therapy.
The challenges for parents can be many, Sachs said, including the fact that 30 percent of children with ASD will be nonverbal, 50 percent will wander away and 84 percent will live at home as adults.
“Every individual is different,” she said. “Autism truly is a spectrum disorder. It’s a statement that’s sometimes overused that when you’ve met one child with autism, you’ve met one child with autism.”
But there is hope.
“ABA therapy complete changes the trajectory of the lives of these children and their families and our community,” Sachs said. “There is a treatment out there that can make a difference. Time is of the essence. If you have concerns, don’t wait.”
An Evening of HOPE, benefiting Project HOPE Foundation, is April 27 at the Greenville Convention Center. The event features a cocktail hour, sit-down dinner, auctions and more. For tickets, visit www.projecthopesc.org.