With applied behavior analysis, an intensive but costly treatment program, many autistic kids can lead normal lives.
When Susan and Joe Butler’s son, Collin, was born 22 years ago, he seemed normal and healthy. By the time the South Carolina boy was 14 months old, his parents were worried. Something seemed terribly wrong.
The toddler was talking less, no longer using words he’d known a few months earlier. Instead of communicating verbally, Collin threw tantrums. It took multiple visits to a pediatrician and testing by a specialist for the diagnosis – autism spectrum disorder (ASD).
A therapy known as applied behavior analysis (ABA), however, can help others like Collin.
The autism spectrum covers a range of complex neurodevelopment disorders, including Asperger syndrome. It’s characterized by communication difficulties, restricted and repeated patterns of behavior and, especially, impaired social interaction, affecting 1 in 68 children in the U.S., according to the Centers for Disease Control and Prevention (CDC).
A baby with autism may not respond to people nearby and focus intently on one item for extended periods of time. Some children, like Collin, appear to develop normally for a while before developing signs of autism. Researchers haven’t figured out what causes it, although genetic and environmental components may play a role.
Applied behavior analysis can help autistic youngsters improve basic skills like looking, listening, and imitating. It also helps them develop complex skills necessary for success in school and adult life – including reading, conversing, and understanding another person’s perspective. The therapy is based on understanding behavior and how physical and environmental influences can change behavior. While there are various forms of the therapy, all use basic principles and techniques, such as rewarding appropriate speech and interactions and withholding rewards for inappropriate activities and avoidance behavior.
“There are a lot of unproven, fad treatments that supposedly can help autism, from changing diets to swimming with dolphins and everything in between. But ABA is a form of therapy that has research and evidence behind it,” says Michael J. Morrier, assistant director of the Emory Autism Center in Atlanta.
The U.S. Agency for Healthcare Research and Quality (AHRQ) recently published an analysis of over 60 studies, concluding the therapy, especially when started after a child is first diagnosed with autism and continued for several years, significantly improves cognitive functioning and language skills.
Starting the therapy as soon as possible after a child is diagnosed is important. “If a child with autism has ABA before the age of 5, when they leave treatment about one-third of them will be indistinguishable from their peers,” Morrier says. “They will still have little traits of ASD but, for the majority, most people wouldn’t know they have autism.”
The therapy starts an evaluation to pinpoint the autistic child’s specific strengths and needs. Afterwards, therapists develop a plan to focus on ways to work with the youngster individually on developing appropriate behavior.
ABA comes in various forms, although all use techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.
“For example, if a child with ASD is not talking, the way to teach him may be a little different with various forms of ABA, but all reinforce communicative attempts and don’t reinforce no communicative attempts,” Morrier explains.
“An ABA therapist may hold up a flash card with the word ‘ball,’ and if the child says the right word he gets the ball. In another form of ABA, the child may be playing with a ball, and a therapist will hold the ball until the child says the correct word to get it back.”
Depending on the needs of both the family and the child with autism, a therapist may come to the home to work with a child for 7 or 8 hours most days of the week. A child may also go off-site for therapy. Some off-site programs embed treatment within normal childhood activities.
At a daycare center within the Emory Autistic Center, two-thirds of children have a diagnosis of autism while another one-third are developing normally. By having normal youngsters in the same daycare setting as kids with autism, therapists can work on teaching the autistic youngsters how to interact with normal peers in typical preschool activities. The children remain in the program for 12 months, until they leave for kindergarten and public school.
For some families, a therapist may come daily and work with the autistic child and a parent within the home. When both parents work, this approach may not be practical. “However, all good ABA programs involve parent participation and give parents strategies they can use with their child at home and in the community,” Morrier says.
ABA therapy typically lasts for several years. At the Emory Autistic Center, some autistic children may respond after 1 or 2 years, while others take 3 or 4. “Every child is different,” Morrier explains. “No one knows why some kids respond better and faster than others.”
The therapy doesn’t “cure” autism.
“The hallmark of autism is having social communication problems and restrictive repetitive behaviors. If you have ABA target social communication skills, and kids are learning to talk, interact with other kids, and you test them, many of these children will not technically qualify for an autism diagnosis any longer,” Morrier answers. “However, they are not ‘cured,’ although they may no longer demonstrate typical autistic behavior.”
Collin Butler is an ABA success story. After several years of therapy, his communication abilities and social interaction improved dramatically. By the time he entered third grade, he was functioning appropriately in school and no longer needed it. Last fall, Collin graduated from the University of South Carolina, telling well-wishers he wants to give hope to other people with autism, and their parents.
If a child is diagnosed with autism, medical providers often recommend ABA and provide resource information about the therapy. Morrier also advises checking out Autism Speaks (a non-profit advocacy group for people with ASD) and itsguide to understanding the therapy.
ABA involves many hours of therapy a week, often for years – making it expensive and problematic for many families. (It can cost more than $500,000 to raise a child with autism to age 22.) For those who qualify for Medicaid, benefits for autism treatment are now mandatory, but individual states decide which specific treatments, such as ABA, are covered.
Make sure you check with your health insurance provider to see if the therapy is covered. Only 38 states have a mandate requiring private insurance to cover ABA.
“Parents considering ABA for their child need to be aware of this because many families have to pay out-of-pocket. There are some free services through public schools, but you cannot request ABA – schools decide on the approach,” Morrier says.
February 18, 2020
Janet O’Dell, RN