When I began reporting on autism about 15 years ago, therapists would talk about achieving the “optimal outcome” for children on the autism spectrum. What they meant was changing the classic behaviors associated with the condition–suppressing repetitive actions such as hand flapping, drilling young kids to make eye contact, rehearsing speech and social interactions–so that ultimately the children would no longer meet the diagnostic criteria for autism. It was a difficult goal that only a small percentage of people could achieve. It is now widely regarded as being wrong-minded.
“We’ve moved away from thinking of autism as a condition that needs to be eliminated or fixed to thinking about autism as part of the neurodiversity that exists across humankind,” says Geraldine Dawson, director of the Duke Center for Autism and Brain Development in Durham, N.C. “The question then becomes, How do we best support people who are autistic, and how would you measure improvement if you are conducting clinical trials?” Dawson, along with two colleagues, wrote about this shift in a recent article in JAMA Pediatrics. It reflects a widespread reevaluation of the goals of therapy and metrics for success, driven in part by the self-advocating voices of people on the spectrum. They have helped to increase awareness of the positive effects of insisting that autistic people behave in a way that is not natural for them.
This reassessment does not mean that early intervention is less important for children with autism. The goal of therapies should be to address the defining impairments of autism, such as difficulties communicating and establishing social relationships. It should also aim to reduce disruptive and harmful behaviors like head banging and tantrums. The individual’s abilities and desires will determine the outcome. It will not be necessary to conform to the norm.
Therapists don’t have to focus on changing behavior that is essentially harmless. Dawson cites Dawson’s example of a teenager telling his therapist that he doesn’t want to work on maintaining eye contact. She says, “That should not be okay.” She says, “That should be okay.”
The neurodiversity movement has encouraged scientists to examine the high cost of forced conformity in autism. A 2018 paper, for example, found a link between trying hard to “pass” as nonautistic and a higher risk of suicide. Ari Ne’eman, co-founder of the Autistic Self Advocacy Network, said that trying to maintain a neurotypical appearance draws attention away from other things. “If you’re constantly policing your eyes and second-guessing if you’re talking about too many things that interest you, all that energy and cognitive load is being wasted on something that doesn’t matter to you,” Ari Ne’eman, an autistic co-founder of the Autistic Self Advocacy Network, says that clinicians often have biases against certain behaviors. Too often therapists are “‘teaching to the test’ of typical appearance,” he wrote in a 2021 piece in the AMA Journal of Ethics.
The neurodiversity movement’s watchwords are “nothing without us.” This means that autistic people and their family members help to set therapy goals. “If you were a nonverbal six-year-old and at 12 you are able to speak, whether through an iPad or with your voice, that can be an optimal outcome,” says autism researcher Connie Kasari of the University of California, Los Angeles, who often works with minimally verbal people on the spectrum. She observes that they can be very happy. They can work. It all comes down to how you define success in your world .”
The old goal of losing an autism diagnosis is no longer a priority for many people. Dawson said that “when we follow people and see if it is associated with better quality of life, it just doesn’t.”