A new study says that some autistic children can not only lose their diagnosis as they get older, but become indistinguishable from typical peers. That might sound like great news, but it is just the opposite to a growing number of individuals on the autism spectrum who believe that being autistic is a central feature of their identity.
In the study, University of Connecticut psychology professor Deborah Fein assessed 34 adults who had been given an autism diagnosis as children; many had received behavioral interventions and were considered to have “optimal outcomes.” As young adults, the individuals in Fein’s study were found to have “no current symptoms of the disorder” and to be “functioning on a par with their mainstream peers.”
Some parents may wish for a cure for autism, out of the hope that such will enable their children to lead better lives without needing special education services, extensive and expensive therapies and 24/7 care for all of their lives. But it’s questionable whether autism can be cured.
What Exactly Does It Mean To “Grow Out Of” Autism?
If autism is understood strictly as a clinical diagnosis according to certain behaviors, then not meeting those criteria would means one was “officially” no longer autistic. But autism (which is now diagnosed in 1 out of 88 children in the U.S.) is increasingly understood as a “neurobiological construct and identification,” as Emily Willingham, a scientist and mother of kids on the spectrum (and a friend of mine) writes in an analysis of the new study in Forbes.
While those in the study were said to have “grown out of” autism, a closer look at the participants and at what autism is suggests otherwise, says Emily. Those who showed “optimal outcomes” were said to have “higher cognitive functioning and somewhat milder initial symptoms” than children deemed more severe, including my own teenage son Charlie.
That is, the 34 individuals in the study may have “outgrown autism” to the point that clinicians judged them to no longer meet the criteria for autism. But they could still have “’residual difficulties’ with various aspects of autism, including executive function – think project management – or language or social interaction,” Emily underscores.
Reports in the media about Fein’s study did not ask adults who are on the spectrum about it. Using social media, Emily asked autistic adults “what’s going on inside them when they appear outwardly typical and asking any readers if they felt they’d ‘grown out of’ autism.” Here’s what she found:
“I don’t ‘look’ like I have it, but I do,” responded one autistic woman, who went on to describe how she’s learned over time about different expectations for behavior and tried to apply those. Others describe using pattern recognition to navigate socially, while still others report having an “optimal outcome”-like period in later childhood but then experiencing a trough of struggles in early adulthood as new responsibilities and expectations arose. They wrote to me about self-monitoring, about working hard to compensate in social situations but then experiencing crashing exhaustion afterward. They talked about self-selecting their social groups as adults as a way of feeling more socially at ease. The concepts that came up again and again and again were “compensating” and “coping.”
Some aspects of autism (such as pattern recognition) have actually helped the individuals Emily contacted make their way in the world. Far from “growing out of” autism, they have learned how to use their autism to “compensate.” But just because they live on their own, have a job, are in a romantic relationship, does not mean they are no longer autistic.
Why It’s Important To Accept Autism and Not Worry About a Cure
Families with children who are, like my son Charlie, on the more severe end of the autism spectrum, have often been the most vocal to call for a cure. For myself, it was when I accepted that Charlie would always be autistic that I started to best be able to help him. As I wrote four years ago:
Once upon a time, I tried to recover my son from autism, through educational therapies and biomedical treatments. As he’s gotten older, I’ve come to think that focusing on recovery distracted me from truly helping Charlie and truly understanding Charlie. ….
Once I had an image of what Charlie “should” be. I wasn’t keeping my eyes focused on the real boy in front of me, the boy who likes bikes over books, and jumping into really rough ocean waves rather than curled up on the couch with one of those books. Now it’s to the future I’m looking, a future where a “world free of unnecessary barriers, stereotypes, and discrimination” [from President Obama's plan to empower people with disabilities] exists, where parents don’t have to scramble and move to get their kids the education they need, and where Charlie can, indeed, live as independently as he can, as a full citizen in his community.
In such a world in which we are not seeking to cure autism but working to accommodate the needs of those on the spectrum, I — and more than a few others — could indeed live very happily ever after.
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