When I first started working with autism about 15 years ago, therapists talked about how to achieve the “optimum outcome” for children on the autism spectrum. What they intended was to change the classic behaviors associated with the condition—suppressing repetitive actions like hand-waving, forcing young children to make eye contact, rehearsing speech and social interactions—so that eventually the children no longer met the diagnostic criteria for autism. It was an elusive goal that only a small percentage managed to achieve. Today it is considered by all to be an error of mentality.
“We have gone from thinking of autism as a condition that needs to be eliminated or resolved to thinking of autism as a part of the neurodiversity that exists throughout humankind,” says Geraldine Dawson, director of the Duke Center for Autism and Brain Development at Durham, North Carolina. “The question then becomes, how can we best support autistic people and how can we measure improvements if we conduct clinical trials?” Dawson, along with two colleagues, wrote about this change in a recent article in “JAMA Pediatrics.”
Social influence and perception in autism
The paper reflects a widespread reevaluation of therapy goals and metrics for success, in part spurred by individuals with autism spectrum disorders making their voices heard. These people have clamored for a greater appreciation for the benefits society derives from having different types of brains contribute to our world, as well as a greater awareness of the negative impact of insisting that people with autism behave in ways unnatural to them.
This reevaluation does not mean that early intervention is any less important for children diagnosed with autism. As in the past, therapies should aim to remedy the underlying complaints, including difficulties communicating and establishing social relationships, and to reduce harmful and disruptive behaviors, such as head banging and tantrums. Today, however, an optimal outcome depends on the capabilities and desires of the individual and his or her family, and is not necessarily focused on conforming to typical behavior.
Autism and human evolutionary success
For example, therapists need not focus on changing behaviors that are essentially harmless. Dawson cites the case of a teenager who told his therapist he no longer wanted to work on making eye contact. “The request should be granted,” she explains. “If we think about people who know each other, there are some who make eye contact a lot and some who don’t.” Similarly, he adds, “if someone is rocking back and forth because he feels more comfortable, I think our society should accept different ways of being in the world.”
The neurodiversity movement, which fights stigma, has encouraged scientists to study the high cost of forced conformity for people with autism. A 2018 paper, for example, found a link between trying to “pass” as non-autistic and a higher risk of suicide. The struggle to maintain a “neurotypical” appearance takes attention away from other things, says Ari Ne’eman, cofounder of the Autistic Self Advocacy Network. “If you’re constantly checking where your eyes are and if you’re talking too much about the things that interest you, that’s all energy and cognitive load not being spent elsewhere.”
The abnormal development of neurons in autism
Ne’eman, who is autistic and a doctoral candidate in health policy at Harvard University, is concerned that the tools clinicians use include biases against certain behaviors. Too often therapists “prep for the typical appearance test,” he wrote in a 2021 article in the “JAMA Journal of Ethics.”
The buzzwords of the neurodiversity movement are “nothing about us without us.” This means that autistic people and their families help define the goals of therapy. “If a six-year-old child doesn’t speak and is able to speak at 12, whether it’s through a iPads or with the voice, this can be a great outcome,” says Connie Kasari, a researcher and autism expert at the University of California at Los Angeles who often works with individuals with spectrum disorder with minimal verbal level. “They can be very happy, they can be fine,” she notes. “It all depends on how you define success within your world.”
The old goal of coming out of an autism diagnosis isn’t a priority for many people with autism spectrum disorder, Dawson points out, and “when we follow up on people to see if a lack of autism diagnosis is associated with a better quality of life, we see which it is not”. What is a priority, she concludes, is to have a good job and establish meaningful relationships: “Be as independent, joyful and productive as possible”. Just like for every human being.
(The original of this article was published in the December 2022 issue of “Scientific American”. Translation and editing by “Le Scienze”. Reproduction with permission, all rights reserved.)