The future of autism intervention: Not too medical, not too social, but just right
Reviewed by Robert Bogenberger, PhD
Written byAmye Archer, MFA
Last updated: 05/22/2023
I’d been teaching writing for 10 years when Michael (name has been changed) walked into my university class. Just days into the semester, he began talking loudly during lectures. The first few times it happened, I spoke with him afterward and tried to find a solution. Michael was polite and apologetic, and he explained that his outbursts were related to his autism and occurred when he was nervous—which he said he was most of the time.
I turned to my colleague Rose Termini, MEd, a disability support specialist who works with students through individual counseling and academic coaching. Together we made a list of Michael’s attributes and talked about how we could tap into his love of research while helping him feel more calm and comfortable in the classroom.
The following week, I gave Michael a task. When I needed something looked up on the spot during class, which I often did, Michael became my researcher. Not only did he do a wonderful job, but his outbursts lessened and he began performing well academically.
By using what’s called “strengths-based intervention,” Termini helped me discover Michael’s strengths and tap into them instead of trying to force him to behave in a way that would make him even more anxious.
Termini’s approach to supporting Michael represents a broader shift: The traditional medical model of disability, which effectively treats autism as a problem to be fixed, is being called into question. The social model behind strengths-based intervention has been gaining favor as part of a move toward seeing autism not as a deficit, but as an aspect of diversity.
Some experts think the social model of disability should entirely replace the medical model that’s been the gold standard for the past 30 years, but the answer may not be so clear-cut.
What is applied behavioral analysis (ABA)?
Sean Inderbitzen, LCSW, specializes in treating people with autism spectrum disorder (ASD) and lives with ASD himself. In recent years, he says, mental health professionals have started to question what has long been the most common approach to working with clients who have autism: applied behavioral analysis, or ABA.1
Developed in the late 1960s by psychologist Ivar Lovaas and others, ABA is based largely on behavior and its consequences. ABA therapy uses positive reinforcement (rewarding someone’s desired behaviors) to teach people more effective ways of behaving.2
“I think the ABA model is getting some really bad branding right now because of the shift toward more social interventions,” Inderbitzen says. This comes in part from a push to rethink ABA as the standard of care, led by a community of adults who were treated with the model during childhood.3 Some criticisms stem from the way Lovaas intended that ABA be used, which set the course for decades. These concerns include:
It’s an intense commitment. ABA usually requires 25 to 40 hours of therapy per week, which some recipients and witnesses see as excessive.4 Treatment also begins at a very young age.
It tries to define “normal.” By focusing on correcting the behaviors and so-called deficits of a person with autism, ABA suppresses people’s natural instincts in an attempt to force them to conform.
It shares some characteristics with conversion therapy. Some researchers have pointed out similarities in how ABA and conversion therapy aim to change behavior through suppression.5 Notably, Lovaas conducted a problematic 1970s study designed to “cure” boys of feminine behavior, which he referred to as “deviant.”6
It sacrifices quality for growth. Inderbitzen notes there has been a flood of venture capital into the field of autism treatment, specifically around ABA.7 This growth, he says, comes with caveats: “There are people saying, ‘Wait a minute, there’s no way they can maintain quality and grow at this rate.’”
While ABA is having a reckoning in the autism community, the method has proven effective, especially when used to develop communication and language skills in children with autism.8 For this reason, experts say, a more nuanced approach is needed to address the critiques of ABA while acknowledging how well aspects of it work. The creation of the Autism Commission on Quality, which oversees new standards around ABA, marks a big step toward reforming the model.
Focusing on the whole person
For many years, Inderbitzen says, autism intervention was based on treating what was seen as wrong with a person who had ASD. Applied behavior analysis was a core part of this medical model. “Instead, we need to focus on the whole person,” he says.
Focusing on the whole person is the basis for viewing autism as part of the larger picture of neurodiversity. Coined in the late 1990s by Judith Singer, an Australian sociologist, “neurodiversity” is the idea that all human brains are different, and those differences should be celebrated. This encompasses people diagnosed not only with ASD, but also with attention deficit hyperactivity disorder (ADHD), dyspraxia, dyslexia, dyscalculia, Tourette syndrome, and other conditions.
Changing the way we talk about autism is an important step, but the real shift, advocates say, lies in breaking down roadblocks. The social model of disability is based on the understanding that people are disabled by barriers in society, not by their impairment or difference. Viewing autism through this lens means making accommodations in a range of social settings to help meet the needs of neurodiverse people—using approaches like universal design, for example, to make environments more accessible.9
Building meaningful connections
Social connection is another building block in the social model. Embracing the diversity of people with ASD includes helping them find ways to build networks where their differences are respected and honored.
That’s what Rose Termini tries to do. She started out providing academic support to students with ASD, but soon noticed they needed more. “The students could do their homework and they could take their tests, but they didn’t have any friends,” Termini says. “They had difficulty getting along with roommates and they had difficulty fitting in, especially being away from home for the first time.”
So she took matters into her own hands and started an informal social group after school one day a week. “It was me and anyone who needed it,” Termini says. “Not just kids with autism, but any of my students who had social anxiety or just needed a place to fit in. We had pizza and talked about things like movies and video games. It was fun.”
My student Michael joined these gatherings, and Termini says he really took to the group. “In his second year, Michael was struggling because he was very rigid, which caused his roommate to leave,” she remembers. “He was anxious over that. The group helped ease his anxiety, and he learned to harness that rigidity in different ways.” Michael focused his energy on becoming a peer mentor of sorts to younger students in the group. He also helped Termini organize the events, plan the menus, and decide which games would be played.
In this context, Termini again recognized Michael’s strengths—his attention to detail, his sense of organization—just as she helped me do when he was in my class. Then she encouraged him to use those skills in a positive way.
The case for a hybrid approach
Researchers have seen a lot of promise in social intervention, but Inderbitzen thinks the best treatment plan lies somewhere in the middle, which means not discounting the medical model entirely.10 “It’s important to have accommodations and a diagnosis rooted in something that is really solid—and medicine is really solid, but it’s not a complete picture,” he says.
Inderbitzen’s treatment methodology relies on the polyvagal theory, which focuses on the nervous system and the body’s response to stress. He says you can’t ignore the physical effects of ASD, so they can’t be factored out of intervention.
When Michael flourished after game nights, for instance, Inderbitzen suggests that his success came both from social connection with peers and a sense of physical safety. “We know people with autism are always at a heightened state of alert, so he probably didn’t feel safe for much of his life,” Inderbitzen says. “But because it was an autism center and he knew the people, there’s this shared sense of safety to allow new experiences to come in.” When a person with autism feels trust in a certain environment, he explains, then social intervention works well.
Inderbitzen also points to the Program for the Education and Enrichment of Relational Skills (PEERS) model, which was used on the hit show “Love on the Spectrum” and has demonstrated positive results in helping people with ASD overcome social anxiety.11 “This model only works if there’s a sense of trust and safety between client and provider,” he says. “The physical effect of being in essentially a trauma response state is always there.”
Charting a path forward
While there’s still much to learn about how best to support people with ASD, Termini and her colleagues are grateful for how far intervention has come. “When I was a student, students with autism were segregated,” she says. “Now they’re an important part of the classroom and school culture, and I’m lucky I get to be part of that.”
As the research continues to unfold and experts agree and disagree, Inderbitzen wants all of us to remember the humanity at the center of the debate. “People with autism are still people,” he says. “They need to feel safe and they need connection, like we all do.”
About the author
Amye Archer, MFA, is a senior writer at therapist.com. She is the author of “Fat Girl, Skinny” and the coeditor of “If I Don’t Make It, I Love You: Survivors in the Aftermath of School Shootings,” and her work has appeared in Creative Nonfiction magazine, Longreads, Brevity, and more. Her podcast, “Gen X, This Is Why,” reexamines media from the ’70s and ’80s. She holds a Master of Fine Arts in creative nonfiction and lives with her husband, twin daughters, and various pets in Pennsylvania.
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