DEERFIELD BEACH, Fla. — Florida Atlantic University has received a $250,000 grant extension for its Center for Autism & Related Disabilities to continue research on Black children who are on the autism spectrum.
"We're very excited," said Dr. Torica Exume, a clinical specialist with FAU CARD. "We're having great feedback. We're enjoying what we're doing here. The results are terrific and we're also presenting in a number of conferences across Florida and the nation."
The goal is to see what the need is in the Black community and get Black children on the spectrum the proper diagnoses, treatment and resources.
Parents of Makhi Lee, 4, of Deerfield Beach, said pediatricians had a difficult time diagnosing him with autism, and lack of culturally appropriate material added to the challenge.
"There were some nuances even with Makhi's speech that were maybe considered cultural that weren't being acknowledged. There were differences in speech charts that maybe only had white faces on them," said Makhi's mother, Terisha Lee. "If Makhi is already having trouble or an autistic child, period, is already having trouble connecting himself to language, it's hard to look at a form with a white face and say, 'This is you.' How was he supposed to know that represents him?"
The family said during the COVID-19 pandemic, it was difficult for their family to find the proper resources, so Lee decided to put her career on pause and help her son at home.
"A lot of therapy shut down, so we kind of had to make do," said Lee. "My husband built us a classroom in the garage, turned our two-car garage into a classroom, and we talked for a year in this space."
Through a therapist, the family was introduced FAU CARD, which opened the door to research and network with other parents with children on the autism spectrum.
"From there, I've actually been able to help and participate in research studies so that they can get our perspective. How we can be reached, how we can be helped, what our unique needs are, and that's great, because no one had asked before then," said Lee. "So I would love to see more representation, more culturally appropriate materials, but also more practitioners that look like us so that our kids can relate and so that our kids can see themselves in those professionals, because representation is important."
Thanks to high participation, the $250,000 grant will allow FAU CARD to continue and expand its research statewide with a focus on schools. Currently it is conducting research out of the Treasure Coast, Palm Beach County and Broward County.
"Different schools or different school districts are providing different procedures or policies, and if we could have just one uniform way or one standard way of diagnosing screening and providing resources, that will tremendously help diagnose more children with ASD," said Exume.
Last year, 160 families participated in the study, as well as some 72 health-care providers and professionals all wanting to help Black families with children on the autism spectrum.
"We're just the typical family that wants the absolute best for our children on the spectrum and off," said Lee.
Lee has since created motivational T-shirts with autism-positive messages to pay it forward.
She sells them on TerishaLee.com. All proceeds go back to help families with children on the autism spectrum who need help paying for services.
"Even if it's just in a small way, I want people to know that you are not alone if your children has a disability or a delay," said Lee.
Researchers with FAU CARD said they are looking for about 25 Black families to participate in the study.
To join, contact Exume via email at firstname.lastname@example.org.