New nonprofit 'Champions' awareness and support for families with autistic children

Palm Coast Observer
Neighbors

Antonella Varvara, like most moms, always has one eye on her kids, no matter what she is doing.

But caring for her teenage son Nicholas requires extra vigilance, because Nicholas has been diagnosed with autism.

Nicholas is non-verbal and completely dependent on Varvara, she said, but is also at an age where support resources are beginning to drop off.

Local parents with older autistic children take their kids to Jacksonville or to the Daytona area to access support, she said.

“And realistically, when ... parents have other kids in schools, that’s not happening,” she said.

Antonella Varvara’s experience as a parent of a child with autism spurred her to create Autism Champions, Inc., a nonprofit in Palm Coast that supports families and individuals with autism. The nonprofit was especially borne out of a need for more resources for autistic people over age 11.

It’s important for us not to have one idea of what an autistic person is. They look like you.”
— MARY-HELEN TOPPIN, Florida Autism Center Clinical Director

Varvara said she is working toward having weekly social events and skills classes for families with autistic children.

Another big part of Varvara’s nonprofit will be education and advocacy, she said.

That’s why one of the first events she lined up for April — Autism Awareness Month — was an educational session with the Bunnell Police Department.

On April 5, Varvara and Florida Autism Center Clinical Director Mary-Helen Toppin, alongside Clinical Supervisor Adina Hernandez, sat at a table in the BPD’s temporary headquarters and taught officers about what autism is, recognizing the signs of someone with autism and how police officers can deescalate a situation involving someone with autism.

FIRST RESPONDER AWARENESS

Toppin told the officers that autism presents differently in each individual: Police officers shouldn’t fixate on stereotypes when interacting with people who are or may be autistic.

“It’s important for us not to have one idea of what an autistic person is,” Toppin said. “They look like you.”

Toppin said one person with autism may have gifted intelligence, while others may struggle. Communication levels vary from non-verbal to highly verbal.

I by no means expect them to be experts in autism after an hour’s worth of training. But it’s a start.”
— DAVID BRANNON, Bunnell Police chief

Autism can affect a person’s sensory experience, motor skills and social abilities, Toppin said, but to a different extent from one person to the next.

“There are no two autistic people who are the same,” Toppin said. “I don’t want anyone to go out in the field and think, ‘I know what an autistic person looks like. Because that might not be the case.”

It is also critical that police officers dealing with autistic people know about potential destructive and soothing behaviors, Toppin said.

Varvara said her son Nicholas displays self-destructive behaviors through arm biting, and has an arm guard to protect him.

In many cases, Toppin said, communicating with family members who know what could soothe the individual, or even just handing them a sensory toy or item, could help de-escalate tense situations with an autistic child who is lost or an autistic adult having a meltdown.

BPD Chief David Brannon said the seminar for his officers was important to him. He has friends with autistic children who have had bad experiences with police, he said.

“This is an area that I’m passionate about and want to lead our agency in making sure that they get this training,” Brannon said. “This topic was never covered in the 26 years that I worked in law enforcement.”

De-escalation is always better, Toppin said, so long as it is safe.

Brannon said his officers are already trained in de-escalation, but he wanted to give them a greater understanding of tactics for getting everyone involved home safely when they are interacting with someone with autism.

For him, Brannon said, providing this training was about making sure officers could respond as responsibly as possible with someone who is autistic.

“I by no means expect them to be experts in autism after an hour’s worth of training,” Brannon said. “But it’s a start.”

AUTISM CHAMPIONS PLANS OUTREACH

The BPD education seminar is just the start for Autism Champions, Varvara said.

Not only does she want to reach out to other first responders, she said, she also wants her nonprofit to connect families and individuals with autism through weekly social events and skill classes.

Varvara said she is working with the Florida Autism Center to get applied behavioral analysis therapists to volunteer to help with the skill classes.

Autism Champions will help teach individuals with autism life skills like doing laundry, grocery shopping, hygiene and more.

It will also teach and reinforce social cues, Varvara said — like learning to recognize emotions, and to recognize danger — and teach about resources like police and fire departments.

Varvara said she teaches all of these skills to her own son each day, reinforcing the lessons through repetition.

She hopes to have these classes twice a week at a community center where parents or guardians can sign up their children.

The proposed classes are similar to the goals of the Florida Autism Center, said Maegan Howell, director of clinical operations in northeast Florida at BlueSprig Pediatrics, which operates the Florida Autism Center.

Howell said many children with autism struggle with basic tasks other children might pick up without a problem, so the Florida Autism Center develops a longterm treatment plan for each child, broken down into six-month periods, to help the child reach tailored milestones.

“So, whatever that is,” Howell said, “we work with the family to really focus that individual child’s treatment plan for that goal and looking at their longterm goals.”

NEEDS AND RESOURCES

Autism diagnoses are becoming more common.

According to data released by the Centers for Disease Control in 2020, one in 36 8-year-olds have autism. In 2018, that number was one in 44, and in 2000, it was one in 150.

Access to resources for early diagnosis makes all the difference, Mikaela Wooten said.

As an educator with a master’s degree in special education, she knows the data. And as the mother of two autistic children — one of whom received earlier intervention than the other — she can see the difference.

“We really, really attribute the difference in the boys’ success at school to the difference in their access to early intervention,” Wooten said.

But, Wooten said, therapy access is limited in Flagler County.

Both of her sons qualify for and need regular therapy sessions, but there are not enough therapists in general in the county who are accepting new children for appointments, Wooten said, let alone therapists who specialize in helping children with autism.

“There’s nobody, no mental health counselors in Flagler County that will take children that don’t have a waiting list,” Wooten said. “If you’re not a family that is ... as aware or comfortable or familiar with things, you need counseling to help you notice things. It’s just a terrible situation.”

When the Wootens first began seeing the signs in her now-13-year-old son Logan, Wooten said, they did not have resources for early intervention where they were living. But it was different for their son Kai, who began showing signs at 18 months, when the family lived near an early intervention program, Wooten said.

We need to somehow find a way to reach parents of young children to tell them it’s not a bad thing to have their kids screened."
— MIKAELA WOOTEN, special education teacher

Kai qualified for enrollment, and now, at age 9, does not struggle as much as his brother.

“Kai definitely benefited a lot from that program,” Wooten said.

That outcome is why experts encourage early intervention, said Howell.

Ideally, Howell said, a child can start therapy services between ages 2 and 5.

“It doesn’t mean that if a child receives a diagnosis later in life that they can’t still benefit,” Howell said. “But the research supports that early intervention.”

A lot of parents don’t know the signs and rely on their kids’ doctors, who only see the child for minutes at a time and may not notice the signs on their own, Wooten said.

“We need to somehow find a way to reach parents of young children to tell them it’s not a bad thing to have their kids screened,” Wooten said. “It’s not a bad thing to ask questions.”