At age 3, Grace couldn’t sit still or hold a conversation with her mom. Angela Falleur said her daughter was kicked out of pre-school for misbehaving.
The family had to wait nine months for Grace to get diagnosed by a developmental pediatrician.
Until then, Falleur had never heard of autism spectrum disorder.
“I felt like we wasted a whole year of her life,” she said. “We spent that year not understanding my child’s deficits, not really knowing what to do to help her.”
That was 12 years ago. Falleur and her husband had three more children who were diagnosed with autism. Now she’s a teacher for third to fifth graders who are autistic at a Pasco County public school and often hears from parents who say they’re stuck in months-long waitlists for autism therapy.
Autistic children respond best to treatment in the first few years of their lives, when the brain is most active in reforming neural pathways — the key to learning and unlearning behaviors. Delayed diagnosis and treatment can lead to greater challenges adopting the motor and social skills taught in therapy, hurting a child’s ability to become autonomous later in life.
“Kids can be diagnosed at 18 months,” said Lauren Gardner, autism program director at Johns Hopkins All Children’s Hospital in St. Petersburg. “Unfortunately for most kids, they’re not getting diagnosed until they’re 4 years old.”
The wait times for undergoing a diagnosis screening and starting therapy in Florida can range from 8 to 24 months, according to Elemy, a national autism therapy provider. Insurance companies require an official diagnosis before they’ll pay for applied behavior analysis, the most common type of autism therapy.
The average wait time for an autism screening at All Children’s Hospital is six months, but can take longer if the child is older or needing to be re-evaluated, Gardner said.
The COVID-19 pandemic aggravated wait times, forcing providers to shut down in-person services and delaying patient appointments as they transitioned to telehealth appointments.
Not enough providers
Long wait times are exacerbated by a lack of providers diagnosing and treating autism in Florida, said Alicia Anthony-Zabala, co-owner of Missing Piece ABA, a Tampa Bay company that offers applied behavior analysis therapy to children on the spectrum.
The treatment — applied behavioral analysis — teaches new behavioral and language skills through positive reinforcement. Providers teach children how to appropriately get someone’s attention or sit still for a length of time. Then they’ll reward desired behavior with a matchbox car or time playing on an iPad.
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She said low pay has pushed many providers out of the industry and kept others from joining it.
The average annual salary in Florida for registered behavioral technicians is $34,436, according to ZipRecruiter. That is nearly $7,000 less than the national average, and $2,000 below the state’s living wage for a single adult with no children, according to the Massachusetts Institute of Technology’s Living Wage Calculator.
The state has been cracking down on Medicaid billing fraud in the last few years. Critics say those measures — tighter restrictions and lower reimbursement rates — have made it harder for struggling treatment clinics to stay afloat.
Registered behavioral technicians run most day-to-day therapy sessions and must be supervised by a board certified behavioral analyst for 5 to 10 percent of their time working. But in 2019, Medicaid announced that the technician and behavioral analyst cannot both bill for supervision time. That means clinics have to pay technicians out of pocket for the time they’re supervised.
In April, the Agency for Health Care Administration proposed a new Medicaid rule that would end reimbursements for applied behavior analysis services given at camp or during most after-school activities.
The rule also requires a parent or guardian to participate in every therapy session, creating another challenge for working families.”There’s an assault on the field in our state,” Anthony-Zabala said.
She and her husband love their life and house in Florida, but they have talked about moving to another state to provide treatment if restrictions and out-of-pocket costs continue to rise in the state.
‘Keys in the freezer’
Valerie McFarland has a 5-year-old autistic son. She noticed a regression in Tyler’s behavior when he was 16 months old. His body stiffened and he stopped making eye contact or speaking.Tyler was put on a waitlist for a screening with a developmental pediatrician for “11 months and 11 days,” the mother said.
McFarland tried to get Tyler an earlier evaluation with a neurologist. He was put on another waitlist.
Before getting an official diagnosis, McFarland found herself constantly questioning what she could’ve done to cause her son’s atypical behavior and what she could do better to help him. The screening delay also strained the parents’ marriage, which became rife with arguments about parenting styles and potential treatment options.
“There are days you’re so angry,” she said, “every time you try to open your mouth, all the energy is coming out of your eyes.”
She called the neurology clinic every Monday, when patients are more likely to cancel, hoping that she could grab an open slot. That’s how McFarland finally got her son evaluated at age 2 — after waiting seven months.
Getting the diagnosis was only the beginning, McFarland said.
She and her husband, who also have a 7-year-old daughter in therapy for dyslexia and attention deficit hyperactivity disorder, take turns staying up at night to supervise Tyler. He can’t sleep for more than a couple hours.
The family spent the past two years asking Medicaid to cover the cost of a safety sleeper, an enclosed bed to protect from night wandering. McFarland said they were approved after their second appeal — but it took hundreds of hours of paperwork and phone calls to get there.
Medicaid will cover the entirety of the $1,400 bed, which they hope will soon arrive. Then a behavioral analyst will come to the Palm Harbor family’s home and help Tyler get comfortable with the bed.
“Meanwhile, you’re so exhausted you’re leaving the keys in the freezer,” she said.
Tyler is now in 20 hours of applied behavioral analysis, an hour of speech therapy and an hour of occupational therapy every week. McFarland said her son recently started holding eye contact and saying words like, ‘go,’ ‘no,’ and ‘stop.’ He’s also learning to use sign language and NOVA Chat, a touch-screen speech device.
The mother hasn’t heard her son say “mom” in 4½ years. But she knows that day will come.
“We are making a lot of strides in the past few months,” McFarland said. “It’s super exciting.”
Editor’s note: Language referring to autism in this story was updated May 12.