At a time when 1 in 68 children are being diagnosed with autism, two studies have emerged stating that a small number of them can be expected to overcome their symptoms and their diagnosis.
In a feature titled “The Kids Who Beat Autism” in this Sunday’s New York Times Magazine, a reporter covers the two studies as well as the stories of some of the children who do—and don’t—leave their diagnoses behind. The stories of “positive” or “optimal” outcomes are riveting—some kids grow from being completely nonverbal and self-injurious to typical adolescence. But who will improve is difficult to predict.
According to both studies, higher IQ plays a role in these outcomes, and some (though not all) of these kids had comprehensive early interventions including applied behavioral analysis (ABA). That early and painstaking intervention is also the source of some controversy; in the article, advocate Ari Ne’eman criticizes the idea that these therapies can or should be used to alter the autistic brain or autistic behaviors: “Even if such a thing were possible, we don’t think it would be ethical.”
Others in the autism community were more positive. Judith Ursitti, director of government affairs at Autism Speaks and mom to a 10-year-old autistic boy, says, “It’s wonderful to read about individuals who are doing well—some who are still on the spectrum and some who no longer meet the criteria. This is not a pronouncement that every child can or should be recovered. It’s a reflection of the different paths individuals on the autism spectrum can and do take.”
But some parents have expressed concern. While the researchers remind caregivers that very few kids on the spectrum “recover,” some wonder if the story will instill too much hope of a “cure” among mothers and fathers distraught over their child’s diagnosis, and that the story casts a negative light on what they see as a neurological difference.
And others resent the idea that kids can “beat” autism. Jessi Cash, who blogs at Deciphering Morgan about being an autistic mom to an autistic 9-year-old, commented on Facebook, “You don’t ‘recover’ from [autism] as if it were the flu. It’s a neurological way of being. You can mask the presentation, but it’s still there.”
Alicia Hart, author of Foods, Moods & Isms and mother to a 12-year-old autistic son, wrote, “The article’s takeaway message for a lot of people is that $40,000 a year for 40 hours a week of therapy will possibly move your child out of the diagnosis. Hello debt and goodbye childhood.”
And muddy waters could have an impact on school-based services. Anna Perng, mom to two young boys on the spectrum, is worried that school districts will congratulate “confused parents on their kids ‘losing’ their autism diagnoses” and remove hard-won supports.
Autism can be a tough, lonely road for parents. It’s easy to read this story’s headline and miss the basic premise of these studies: Autistic kids can and do learn and grow, but at different rates and with different outcomes. One mother quoted in the story, who devised an education plan for her son that involved everything from Leave It to Beaver to robots, thinks he deserves respect, not skepticism. “Mark worked so hard,” she says. “To deny everything he did to get this far isn’t fair.”