Unraveling the mysteries of Autism
By Karen Kennedy
“My child doesn’t play well with others and regularly throws tantrums. Could he have autism?”
“My toddler isn’t talking yet. The doctor says she might just be a ‘late bloomer,” but I’m worried she has autism.”
“My preschooler is obsessed with one certain object and won’t play with any other toys. I’ve read that’s a warning sign of autism. Is that true?”
These are the kinds of inquiries therapists at autism treatment centers field every day, along with panicked phone calls from parents whose fears have been confirmed with an autism spectrum disorder (ASD) diagnosis, and who desperately want to know, “What do we do now?”
What is Autism?
Autism Spectrum Disorder is a group of nearly a thousand complex disorders of brain development. It can manifest itself in atypical social interaction, repetitive behaviors, lack of empathy, obsession with a particular object or topic, a strong aversion to physical contact or changes in routine, and almost always, moderate to severe language and communication breakdown (25% of those with autism are completely non-verbal and must rely on alternative forms of communication.) While significant numbers of autism patients are also afflicted with an intellectual disability, others are extremely gifted in visual arts, music or math.
Despite its prevalence today (currently, one in sixty-eight children in the U.S. receives an ASD diagnosis each year,) the causes of autism and other related brain disorders are still not fully understood. While research has definitively linked the disorder to genetic mutations, the jury is still out as to what affect other environmental factors (such as pollution or food additives) might have on the development of the disorder. Boys are four times more likely than girls to develop it, and heredity plays a factor as well.
Over the years, desperate parents have tried special diets, essential oil treatments, weighted blankets and vests, hyperbaric chambers and chelation (a chemical process in which heavy metals are removed from the blood.) Currently, the scientific community endorses only one form of treatment—applied behavior analysis (ABA.)
Help Is Right Here
While parents in other parts of the country may struggle to find help locally, those who live in Hamilton County are fortunate that one of the preeminent treatment facilities in the world is just around the corner.
Headquartered in Fishers since 2009, the Behavior Analysis Center for Autism (the BACA) was founded by Dr. Carl Sundberg, who studied behavior disorders and therapy, along with his brother Mark, under Dr. Jack Michael at Western Michigan University. Michael was a colleague of noted behavior researcher B.F. Skinner, whose “operant conditioning” work with lab rats proved that behaviors can be modified by immediate positive or negative reinforcers. Skinner also posited that there was a significant difference between the formal properties of language (simply being able to name something) and the functional properties of language (understanding the use or context of the same item.) This theory is key in teaching language to the developmentally delayed, who, for example, might be able to identify a “cup” but be unable to identify what a cup is used for.
The Sundberg brothers were on the leading edge of the ABA approach to treating autism, which was based on Skinner’s theories, and have since become internationally recognized authorities on the subject. And while Mark currently resides on the west coast, Carl has chosen to practice in Indiana.
Originally located in a small house on Allisonville Road, the BACA now has two locations in Fishers, as well as one in Zionsville and a northern branch in Elkhart, with a total of nearly 200 employees serving around 150 clients at any given time. The facilities are run by Sundberg and his wife Devon, who is also a board-certified behavior analyst. Clients come to the BACA from around the world, with parents choosing to move homes and jobs for the chance to have their autistic child receive treatment here. (One family relocated to Hamilton County from Australia, while another regularly flies a BACA therapist to Shanghai.)
“Most of our clients are diagnosed around the age of two,” said Devon. “Our youngest client currently is eighteen months and our oldest is twenty-three years old. When parents first come to us, they are, first and foremost, exhausted. Sleep disorders are common in autism patients, so in addition to coping with the challenging behaviors their child is exhibiting, the parents are running on very little sleep for weeks or months—sometimes years. Our job is to outline a treatment plan and move the client closer to whatever outcome is possible for them.”
What does ABA Treatment Look Like?
The brightly colored rooms at the BACA all serve a purpose and attempt to emulate real word scenarios, such as classrooms, kitchens, grocery stores and playgrounds. Therapists work one-on-one with clients of varying skill levels.
“If the client is working on language skills, there may be an augmentative communication device in use, and the client will be rewarded in tokens for choosing the correct answer,” explained Devon. “If the client is working on social skills, they may be practicing taking turns in a game. If the client is working on life skills, they may be making a simple meal or making a bed. But regardless of the situation, all of the teaching methods are rooted in behavior modification techniques; immediately rewarding good choices and discouraging bad ones.”
“Because autism is 24/7, we also need to work with the parents,” said Carl. “They need to learn coping skills, and how to create learning opportunities in the home. Clients are generally in the center full-time—Monday through Friday from 8:30 a.m. to 4:30 p.m. The goal of treatment is based on the individual’s capabilities. In less severe cases, the goal may be to return the child to school with his or her peers after some of the learning hurdles have been cleared. In the more severe cases, the goal may be to help the client eventually assimilate into a group home.”
“The Gold Standard of Treatment”
Cecilia and Mike Coble of Fishers know only too well what it feels like to be the parent of an autistic child. They recognized signs of autism and developmental delays in their daughter Crysta at just six months old. After taking her to various medical specialists around the country with no results, someone suggested ABA therapy.
“Crysta is fourteen years old,” said Cecilia. “When we first took her to the BACA at age five, she was completely non-verbal. They first taught her sign language, and it was such a huge relief to be able to finally communicate with her. Now she’s talking all the time! She’s able to attend 8th grade with her friends. It’s been a really long road, but we were so lucky to find that help was in our own backyard. And not just any help, but the gold standard of treatment. Finding the BACA literally changed our lives.”
In an effort to integrate neuro-typical learners and children with autism, the BACA created the “Sprouts” Peer Model preschool program, in which those with social and learning challenges can model appropriate behavior and those without learn acceptance and tolerance.
Along with their staff, the Sundbergs have also created BACA Charities, with a mission to raise resources to support research in the ABA field. BACA Charities sponsors adaptive programs in partnership with the Monon Community Center in Carmel and holds the annual BACA Bolt for Autism 5K at Fort Harrison State Park in September.
Families who are interested in learning more about the BACA can visit www.thebaca.com or call 317-436-8961.