A child participates in an applied behavior analysis session. (Francine Orr/Los Angeles Times/TNS)
The therapy long considered the gold standard for autism is facing increasingly vocal opposition, mostly from people who experienced it as children.
Applied behavior analysis, or ABA therapy, involves a range of interventions based on the theory that the environment influences behavior. The therapy can reduce challenging behaviors and improve quality of life for people with autism through positive reinforcement, advocates say.
But critics say the method’s goals are to “normalize” people with autism by camouflaging or suppressing their identity and personality to conform to a neurotypical norm.
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The debate comes to a head this month as the Autism Society hosts three public meetings in preparation for a position paper on ABA to be published later this year.
The town halls are designed for people in the autism community to share their experiences with ABA, said Christopher Banks, the organization’s president and CEO.
“This is an opportunity for all of us to listen and learn from voices from the autism community in a thoughtful, respectful, and connected space,” he said.
Insurance coverage for ABA indicates its widespread acceptance as a therapy for autism. As of 2019, all 50 states require insurance plans to cover autism treatment, including ABA in most cases, following advocacy efforts by groups like Autism Speaks.
But many autistic adults consider ABA-based interventions to be unethical and harmful, said Zoe Gross, advocacy director for the Autistic Self Advocacy Network, which published a report in October against the ABA.
“There is no good evidence base for ABA…there have not been enough studies of potential adverse effects”, which may include damaged self-esteem, anxiety, depression and trauma, Gross said.
“The behaviorist approach can be done in a dehumanizing way, the idea that you can influence someone’s behavior without knowing who they are,” she said.
Gross said she received ABA as a child in school and her classmates would imitate the therapist saying things like, “My goal for you is to sing less loudly in the choir.”
“I think as a kid I got the clear message that the way I was was wrong and I wasn’t meant to be like that,” said Gross, who considers herself a survivor. of the ABA.
ABA advocates say some of the controversy stems from outdated practices such as the use of restraints or withholding food that are now considered unethical. The new methods are more focused on promoting self-direction and child choice while supporting neurodiversity, said Geraldine Dawson, director of the Duke University Center for Autism and Brain Development and member of the Autism Society’s ABA. Commission, a group of self-advocates, parents and professionals working on the position paper.
“ABA and other forms of early intervention have been shown to improve a child’s ability to learn, communicate, form relationships, make choices, become independent – all skills associated with better quality of life,” she said. “I believe the way forward is one where we need to get people with autism, providers and caregivers all working together…by listening to people with autism, we can improve what we do.”
Therapies involving ABA can help reduce challenging behaviors like aggression, self-harm and irritability, but it’s a misconception that the treatment aims to suppress qualities associated with autism, Alycia said. Halladay, scientific director of the Autism Science Foundation.
“The goal of ABA is to improve communication, to improve how people with autism can interact with other people,” Halladay said. “The goal is absolutely not to make them look normal or less autistic. The goal of all these behavioral therapies is to improve their quality of life, to promote learning.
Parents should seek out clinicians who can assess the child individually to determine their needs, Halladay said.
“ABA is not the only type of intervention, but it is something that works. It might not work for everyone, but that’s not a bad thing. »