Reece’s parents had the means, skills and determination to get help for him. Ed Scott, a graduate of Michigan State, had been a government executive for 17 years before moving into the tech field; after a series of executive positions for companies including Sun Microsystems, Scott co-founded BEA Systems, which became the 12th-largest software company in the world before Oracle bought it in 2008.

After the diagnosis, the Scotts sought help for Reece but found a lack of resources, research and treatment options. Cheryl Scott categorizes the help available at that time as being “pretty skimpy.” She learned through her own research, from a book, that Reece was autistic, a diagnosis later confirmed at Stanford University, where researchers recommended a language therapist for him.

“I can’t tell you how many calls I had to make to find one,” she says, finally locating a specialist 45 minutes from the family’s home.

The Scotts set to work learning as much as they could about autism and speaking to as many experts as they could. They mainstreamed Reece in primary and secondary schools and got him coaching help in social skills. Ultimately, Reece graduated from a private school in Melbourne and went on to earn a bachelor’s degree in Japanese studies at Georgetown University and a master’s degree at St. Antony’s College at Oxford University. He lives in Tokyo, where he founded a computer game software company, and is now a father himself, to a daughter born 15 months ago.

Ed Scott was serving on the board of Florida Tech when he learned that a behavioral research program there would include a treatment component. “That is what drew us,” he says, to donate the millions (neither he nor the school will disclose the exact amount) that helped fund construction of a 22,000-sq.-ft., brick and glass building on the Florida Tech campus that now bears the Scotts’ name, he says. “Most try to focus on a cause or prevention of autism. But treatment can help patients, and Florida Tech was willing to do that. It’s important it’s here, as people have no idea where to turn.”

The program that figured so strongly into the Scotts’ decision to fund the center was Florida Tech’s Applied Behavior Analysis program, which was founded by Jose Martinez-Diaz, a Cuban immigrant who earned a Ph.D. in clinical psychology from West Virginia University. Martinez-Diaz held several positions in the public and private sectors before he founded ABA Technologies, a Melbourne consulting firm based on the principles of applied behavior analysis. Martinez-Diaz came to Florida Tech in 1998 and founded the university’s ABA program, which he headed until 2018, teaching most of the required program courses and developing course material for the entire program.

ABA is used to treat a range of disorders, including autism. It uses positive reinforcement to teach appropriate behaviors and skills while reducing problematic behaviors such as hitting or biting. In treating autism, ABA principles help clinicians individualize an approach, breaking down a child’s progress into manageable steps until more complex steps are ready to be introduced.

Under Martinez-Diaz, Florida Tech’s ABA program blossomed. He also launched the university’s online professional-development ABA program, making the school one of the first in the U.S. to offer the courses for people seeking certification. Florida Tech President Dwayne McCay estimates that Martinez-Diaz trained thousands in ABA during his career.

Martinez-Diaz, who died last September of diabetes-related causes, “made incredible strides in treatment protocol and was an associate dean here,” says McCay. “He was stubborn — very focused on what he was trying to get accomplished — but with a lovely personality. We miss him as a person, as a leader and as an expert.”

Since its founding, the center has treated about 160 clients through in-center services such as early intervention, about 200 with its social-skills program and about 800 diagnostic evaluations, says Dr. Kimberly Sloman, center interim director and director of autism services. About 1,100 children have been impacted by center services in some way, and the center has become as one of the state’s leading institutions in researching and treating autism and training parents and clinicians how to help children. “We have provided treatment for kids from Dubai, and from Italy, and other countries in Europe,” says McCay.

“Our marketing is minimal because we have more patients than we can handle. Most of our clientele learn of us through word of mouth — the child gets treatment here, with the parents observing and learning the treatment themselves,” he says.

Sloman says the center focuses research on strategies to work with children with autism, training for caregivers and treatment services not only for parents but also for schools or other groups working with these children. Early intervention is key, she says.

Though the center had to scale back its activities due to COVID precautions, Sloman noted that its location on a university campus enabled it to continue some efforts, including a social skills program in which the autistic children might “role play what happens in a scenario where they didn’t get what they wanted,” she says. “It’s a fairly brief program. They meet just for an hour once a week, and we send them home with homework. Research shows that actually practicing skills is beneficial.”

Sloman says the Scott Center serves patients as young as a year old up to 21 years old. The average early-intervention client at the Scott Center is about 2½ years old, she says.

Day-to-day operations are handled by five case managers, who are board certified behavior analysts, Sloman says. Two are doctoral students. The facility itself includes observation rooms, space for small group exposures, classrooms for larger groups, a pediatric feeding program center, severe behavior-therapy space and a toilettraining room.

She noted the importance of a good assessment process, which can sometimes reveal an incorrect or incomplete diagnosis — mistakenly diagnosing autism as just OCD or anxiety, for example, though those conditions can be present in ASD cases as well. “It takes a lot of training, experience and nuanced skills to provide an accurate autism diagnosis,” she says.

In the course of helping their son, the Scotts, who live on the Space Coast, became lay experts in autism and have done more at the center than just fund it. “I’ve never known anyone as knowledgeable as the Scotts. We use them as consultants on protocols at the center,” says McCay.

Looking ahead, McCay hopes that diagnosis can be a component of the school’s new biomedical research center at Florida Tech, adding another resource for both families and clinicians. The $18-million facility is expected to be completed this fall.

“There are very few centers that are like the Scott Center, where you have a clinical services provider on a university campus,” says Sloman, who’s also an associate professor for the School of Behavior Analysis. “This is a special place.”

The Costs

Costs vary widely depending on the diagnosis and treatment plan. The following estimates were provided by Special Learning Inc., an autism education organization.

• From birth to about 5 or 6: $35,000 per year, for behavioral therapy
• From 5 to 8: $6,000 a year
• 8 and older: About $1,000 a year, depending on the individual child’s needs

As of 2010, most state legislatures have either expanded Medicaid coverage targeting autism costs specifically or require private insurers to cover more autism service costs as well as provide funding for a wider demographic of autism affected families.

Autism: What We Know

• The Spectrum

Autism is a complex, brain-based condition that affects behavior as well as social and communication skills. Often, difficulty in communication is present. In some cases, the condition can manifest itself in repetitive motor behaviors — body rocking, for example — along with strong reactions to any change in routine, and unusual interests or compulsions — a fascination with trains, for example, or the statistics relating to one particular team.

Once, diagnoses of autism were confined to cases in which the ability to communicate and function were severely affected. Now, the condition is seen as encompassing a range of symptoms, from mild impairments in social and communication skills to the more severe cases that traditionally defined the disorder. The thinking and learning abilities for children with ASD (autism spectrum disorder) can vary from severely challenged to gifted.

• Incidence

In 2020, the U.S. Centers for Disease Control reported that one out of every 54 children is diagnosed with an autism spectrum disorder, based on 2016 data. The disorder affects four times as many boys as girls. It does not, however, affect members of any one racial, ethnic or demographic group more than others.

• Increasing Cases?

It’s unclear whether autism is becoming more common. What has happened is that the number of cases has grown as the definition of the disorder has broadened to encompass milder forms of autism. Once, the diagnosis of autism was only given in cases of children who were completely non-verbal, distant and focused on repetitive behaviors. The autism spectrum first grew to include children with mild language problems but with more serious problems socializing. Then it expanded to include some with normal language but who have problems functioning in school and making friendships. Another reason for the increase in the number of cases: As awareness of autism has grown, parents are more likely to have their children tested earlier, and screening protocols have improved.

• Cause

Genetics appear to account for 80% of autism cases. Some large-scale studies indicate environmental factors may account for about 20% of the increase in cases, but exactly which environmental factors play a role is unclear. Some evidence suggests that factors (all associated with an advanced society) like survival of very premature babies, having older parents (especially older fathers), maternal obesity and exposure to environmental toxins and/or antidepressant medications during pregnancy may play a role, says Dr. Richard Solomon, director of the Play Project, an early autism intervention program. One research study on men in the Swedish military revealed that the smarter and more detailed-oriented the men were, the more likely they were to have a child with autism, he writes.

Diet, however, doesn’t appear to be a factor. And all available evidence — in studies conducted all over the world — rules out vaccines as a factor in causing autism. Dr. Michael E. Kelley, an autism expert at the Scott Center for Autism Treatment, says flatly, “Vaccines do not cause autism.”

Studying Autism

University Autism Centers

The Centers for Autism and Related Disorders, or CARD, comprise a coordinated statewide autism network, publishing research on topics such as language intervention. Led by Greg Valcante, CARD has seven university locations covering all 67 Florida counties.

Funded by the state and managed by the Florida Department of Education’s Bureau of Exceptional Education Student Services, all offer free training; technical assistance to schools and school districts; consultations to parents and caregivers; and resources and referrals.

CARD Locations

• University of Florida — Gainesville*
• University of Florida Health Science Center — Jacksonville
• University of South Florida — Tampa, Fort Myers
• University of Miami-Nova Southeastern University — Coral Gables
• University of Central Florida — Orlando
• Florida Atlantic University — Boca Raton
• Florida State University — Tallahassee, Panama City and Pensacola

*In February, the University of Florida’s Gainesville campus added its 15,000-sq.-ft. Center for Autism and Neurodevelopment — the UF Health CAN, a multidisciplinary, collaborative facility with specialized care for adults and children. Patient navigators help families coordinate across levels of care with specialists such as clinicians, occupational therapists and psychologists, both on and off site.

McKnight Brain Institute, University of Florida, Gainesville

Led by Executive Director Dr. Todd Golde, more than 200 faculty members collaborate in this $60-million university research center housing neuroscience, neurology, neurosurgery and psychiatry departments. Work includes developing drug therapies to treat autism.

Florida Atlantic University Brain Institute, Jupiter (research office), Boca Raton (education office)

Faculty members research subjects related to autism, says Dr. Randy D. Blakely, FAU Brain Institute’s executive director. “These are areas we want to build in. We have four or five investigators, including myself, whose work touches on these areas,” he says.

Dr. Gizelle Anzures, for example, is studying facial recognition processes such as eye tracking and how brain function develops, which could have important connections to autism. Dr. Teresa Wilcox of the institute’s psychology department studies infant cognition and the understanding of social entities, while Blakely’s own research focuses on mutations found in genes that control brain signals, which are then put into mice.

Construction is underway on the 58,000-sq.-ft., three-story neuroscience facility on its Jupiter campus, funded with a $33-million state grant. The school is seeking philanthropic sponsors for areas of autism research and development of brain disorders, says Blakely. The school can offer researchers up to 6,000 square feet of research and office space. Collaborative opportunities exist, with global biomedical research institutes Max Planck and Scripps nearby.

Blakely also sees potential for FAU’s Brain Institute to offer autism treatment over the long term. “We have a relatively young medical school that is set to grow substantially in clinical research,” he says.

 

 

Read more in Florida Trend's July issue.
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