Francia Lugo spent a month preparing her son, Aidan, for the big day.
They practiced wearing the cape, spritzing water in his hair and playing with plastic scissors. He practiced sitting for 10-count intervals until eventually he made it to 20 minutes.
When the training was over, Aidan, now 4, had his first haircut that didn’t result in a total meltdown. His mother was so elated she almost cried.
“A haircut seems like something so mundane, but honestly, I’ve learned there are no small accomplishments,” Lugo said. Everything is a big deal and it takes hard work and commitment from the child, parents, teachers and therapists to make it happen.”
Lugo heard about Snips for Autism, a free haircut training program offered by Gomez Behavior Services in Kendall, through her case manager at the University of Miami — Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD), a program that guides individuals with autism or related disabilities and their families.
CARD, funded by the Florida Department of Education with offices at seven universities — including Florida Atlantic University, University of Florida, Florida State University, the University of Central Florida and the University of South Florida — is one of several key programs in South Florida available to children and adults on the autism spectrum.
Autism Spectrum Disorder is a term for a group of complex developmental disorders that affect social interaction, communication and behavior. The Centers for Disease Control and Prevention notes 1 in 68 children has been identified with autism in the U.S. And while autism crosses racial, ethnic and socioeconomic groups, it is about 4.5 times more common among boys than girls, the CDC notes.
UM-NSU CARD has offices at UM and NSU in Broward and branches in Homestead, Miami Lakes and Miramar. Its services are free, but a diagnosis from a doctor is required to register. In addition to showing parents how they can work with their children to improve their skills, CARD also offers a summer camp and spring break surf camp in Miami Beach.
“We help narrow down the choices and prioritize,” said Dr. Meaghan Parlade, UM-NSU CARD’s Intervention Services Coordinator and a psychologist. “It’s hard to know what’s right for your specific child. We provide a roadmap for each family.”
Angie Sorto’s 8-year-old son, Ruben, joined the center three years ago. He has participated in studies, classes and the summer camp.
“I was completely frustrated and not sure what direction to go. They are a wonderful resource for parents who feel lost,” Sorto said.
There is no known cure for autism, but several treatments have shown to significantly improve the condition. Applied Behavior Analysis (ABA) therapy is the most widely accepted treatment for autism, although insurers don’t always cover it.
“One of our challenges is helping families access services, Parlade said. “We know what types of services families need, but some therapies may or may not be covered by insurance.”
In 2008, then-Gov. Charlie Crist signed a new law that required health insurance plans and health maintenance contracts to provide coverage for autism treatments, although they’re capped at $36,000 annually, $200,000 lifetime.
Still, it can be difficult to get reimbursement. Karelix Alicea, founder of the Miami Association for Behavior Analysis and Lotus Behavioral Interventions, says one insurance company owes her more than $10,000 for services rendered last year.
“Before the autism mandate passed in Florida, only affluent families could cover the cost of ABA therapy, which typically ranges from $40 to $100 per hour, anywhere from 10 to 40 hours per week,” she said. “That can easily amount to somewhere between $30,000-$50,000 per year for a family with just one child on the ASD spectrum.”
Local and national organizations, however, provide services and support for little or no cost.
Parent to Parent Miami is a nonprofit center founded in the 1980s by parents who have children with autism and other disabilities.
“There is a certain reality that sets in when you’re told your child has a disability. It impacts the whole family. We really understand that emotional component,” said Farides Garcia, Parent to Parent Miami’s operations manager, who has an 18-year-old son with autism.
Funded by the Children’s Trust, a Miami nonprofit, Parent to Parent offers free workshops and online courses to teach parents about their children’s rights and how to become their advocates. The staff, most of whom are parents of autistic children, also serve as mediators between parents and schools.
The CDC estimates 50,000 teens with autism lose school-based autism services each year. When her daughter began falling behind in school, Miriam Tellez fought back by getting educated and more involved.
“Parent to Parent was my savior,” Tellez said. “When children fall into a certain category at school, it’s not easy for them to get new opportunities. They went with me to meetings with the school to discuss the Individualized Education Program, a very important document that is like a contract between the parent and the school.”
Another valuable resource is the gift of carefree time.
Chuck E. Cheese hosts Sensory Sensitive Sundays the first Sunday of the month. AMC Theaters and the Autism Society offer sensory-friendly films the second and fourth Saturdays of the month at select locations. Young at Art Museum in Davie has Mommy and Me Sensory Play and the Miami Children’s Museum features Sensory Saturdays once a month.
“Social outings are challenging,” Sorto said. “It’s great to go to events where other parents understand because all our children are struggling. I call it ‘the autistic family.’
UM-NSU CARD Main Office: University of Miami, 5665 Ponce de Leon Blvd., Coral Gables.
Phone: 1-800-9-AUTISM, ext. 1; 305-284-6563
UM-NSU CARD Satellite Office: Nova Southeastern University, 6100 Griffin Road, Davie.
Phone: 1-800-9-AUTISM, ext. 2; 954-262-7111
Parent to Parent Miami: 7990 SW 117th Ave., Suite 200, Miami.
Gomez Behavior Services: 9415 SW 72 St., Suite 131, Miami.
Snips for Autism (free haircut therapy)
Smiles for Autism (free dental therapy)
NSU’s Mailman Segal Center for Human Development: 7600 SW 36th St., Davie.
Jim & Jan Moran Family Center Village
Florida Developmental Disabilities Council: 124 Marriott Dr., Suite 203, Tallahassee.
Autism Speaks: South Florida chapter, 5805 Blue Lagoon Dr., Miami.
Phone: 786-235-1165, Ext. 3
Free “First 100 Days” kit for parents at https://www.autismspeaks.org/family-services/tool-kits/100-day-kit
Autism Society of Broward County: 10250 NW 53rd St., Sunrise.
Easterseals South Florida: 1475 NW 14th Ave., Miami.
Best Buddies Florida: 100 SE Second St., Suite 2200, Miami
Toll-Free: (800) 89–BUDDY