Date Published: April 15, 2019
Elaine Hamilton has spent years helping families of children with disabilities, as a parent mentor, advocate, and volunteer in Ohio. So when a representative of SPARK asked her to tell others about the autism study, she quickly agreed. In fact, she did more than that: she signed up her own family.
“I did it for myself as well,” she says. Her daughter Maliyah, 17, has autism. Two relatives also have autism, and Elaine Hamilton suspects a genetic link. Participants in SPARK — people with autism and often their parents — provide a saliva sample for genetic testing. SPARK researchers look for changes in genes and chromosomes that may contribute to autism.
“Maliyah did have a genetic test when she first got her diagnosis, and they said there was nothing there pointing to autism,” her mother recalls. “But that was 14 years ago, so I’m not sure what they’re looking at now, compared to what they looked at back then.” In the last decade, scientists have discovered more genetic changes they believe to be linked to autism. Genetic tests also have improved since Maliyah was born.
From Speech Delay to Autism: A Diagnostic Journey
When Elaine and Reginald Hamilton began their journey to a diagnosis for Maliyah, “autism was not on our radar screen,” Elaine says. The toddler was walking, cooing and smiling. She would even look right at people with her expressive brown eyes. She just wasn’t talking, her mother explains.
“We kept asking our pediatrician at every visit, ‘What’s going on?’ We just kept getting the same answer: ‘developmental delay.’” As it so happens, Maliyah’s older brother, Donovan, had been a late talker. After speech therapy, he caught up to his peers and even began reading early.
Maliyah began receiving speech therapy and attending a special needs preschool in their school district. A teacher became concerned that Maliyah was flapping her hands and hitting her head on things. She encouraged the Hamiltons to take her to a neurologist at Nationwide Children’s Hospital in Columbus. There, the 3-year-old received an autism diagnosis. “My husband and I were pretty numb,” Hamilton recalls.
They enrolled Maliyah in a research-based autism program in their school district. The program included behavioral, speech, and occupational therapies, along with home visits and parent training. Teachers explained how to use picture schedules to prepare a child for the day’s activities and how to manage sensory sensitivities. Those tools helped prevent behavior problems when Maliyah accompanied her family to stores and other places. “That program was probably the biggest thing that helped us as a family and helped her to manage herself,” Hamilton says.
Hamilton left her job in the marketing department of a hospital so she could focus on school meetings and Maliyah’s medical and therapy appointments. Many mothers of children with autism reduce their work hours or leave their jobs, according to research.1
A Phone Call, a New Career
One day, Hamilton got a call from a supervisor in the Columbus school system. The man said he had heard about her from the principal of a school where she volunteered. He wanted to know if she would be interested in working as a parent mentor. A mentor, he explained, helps educate and guide families through the special education process. She took the job, eager to help other parents understand their children’s rights and navigate the school system.
Being a parent mentor did not mean her own special education path suddenly became smooth. From time to time, Hamilton advocated for Maliyah when problems arose in the classroom or on the bus, or with her Individualized Education Program.
Maliyah is now a tenth-grader who enjoys math, music, painting, and making jewelry. She began talking around age 5, and she often prefers to write down what she wants to tell her mom. She likes her daily schedule to stay the same, but she responds well to changes when her mother drafts a Social Story to explain them, Hamilton says. A Social Story is a particular type of personalized and illustrated story that teaches someone what to expect from, and how to respond to, a new or difficult situation.
In 2018 Hamilton took a job as an information specialist at the nonprofit Ohio Coalition for the Education of Children with Disabilities, the state’s training and information center for parents of children with special needs. Hamilton now helps educate parents in 20 counties by phone.
Telling Doctors about Autism, from a Family’s Perspective
Special needs advocacy is more than her day job. She also volunteers at Nationwide Children’s Hospital, on both the Family Advisory Council of the Autism Treatment Network and the Family as Faculty program. She gives presentations to doctors and newly hired hospital staff about family-centered health care. “My story revolves around autism and what that looks in the medical setting, when my daughter goes to an appointment. I talk about some things that have gone wrong, and what medical staff could have done to support us, and some things that have gone well,” she says.
She learned about SPARK at Nationwide Children’s, one of more than 20 SPARK clinical sites across the country, and joined SPARK’s Community Advisory Council. She hopes research will lead to more effective therapies and treatments for autism. “We all want to know what we can home in on,” she says. And she hopes to spread that information to other families.