Optimal Outcome: I Don't Want My Kids to 'Outgrow' Their AutismJoslyn Gray
A recent study asks a question that has the media abuzz: can kids with autism “outgrow” their symptoms? A small study supported by the National Institutes of Health indicates that a “minority” of children with autism appear to lose their autistic characteristics by adulthood, which the researchers refer to as “optimal outcome.”
“This is not a common outcome,” lead researcher Deborah Fein, Ph.D., told The Huffington Post. “We don’t know what the percent is — it’s almost certainly under 25 percent, and it may be significantly lower than that.”
It’s worth noting here that the word “outgrow” is only coming from the media. The researchers use the term “optimal outcome” to mean demonstrating “an overall level of functioning within normal limits.”
In other words, an optimal outcome is to become an adult who can function relatively well in our neurotypical world.
As the parents of four children, two of whom have Autism Spectrum Disorders, our goal isn’t for our kids to become non-autistic. It’s for our kids to grow into happy, independent adults who contribute something positive to the world. Incidentally, that’s our goal for our two non-autistic kids as well.In order to reach that goal, our kids need help learning better communication skills and stress-management skills. This isn’t to change who they are; it’s to help them find the non-autistic world less stressful.
If, at some point, my kids “lose” their diagnoses, does that mean they aren’t still autistic? Probably not. It means that they’ve developed the skills to pass. In other words, if I had diabetes and managed my blood sugar well, would that mean I don’t have diabetes any more? No. It means I’ve gained the skills to manage it.
The point of this kind of research isn’t really to look at whether some kids miraculously fall off the spectrum. It’s to help identify best practices.
“All of the kids I have personally seen who have moved off the [autism] spectrum have received some form of behavioral intervention,” Dr. Fein said to The Huffington Post.
“I don’t want people to see this story and say, “My goodness! Where have I failed because my child didn’t have an ‘optimal outcome?'” Dr. Thomas R. Insel, director of the National Institutes of Mental Health told The Huffington Post. “What we’re interested in doing is helping parents help their kids grow up to be adults who can really participate in the world — who can work and have a family and a life — whether they have the symptoms of autism or not.”
Biologist Dr. Emily Willingham breaks down the science of the study better than anyone in an article in Forbes:
“Does that capacity mean, in the parlance of the news media reports or an editorial accompanying the paper, that the up to 25% of autistic people who can do this are ‘recovered’ and no longer autistic? Or does it mean, rather, that they’ve become increasingly adept at meeting the interaction standards of the social majority?”
I’d argue that it’s the latter, as would Ari Ne’Eman, the director of Autistic Self Advocacy Network (ASAN).
“These youth are not growing up to be non-autistic, they’re just Autistic adults with good passing skills,” Mr. Ne’Eman wrote in an email to me, expressing concern that while adults with autism may have developed good skills, it doesn’t mean they don’t still need support.
“Unfortunately, those deemed to have lost a diagnosis face the same challenges of managing coping strategies and the stress and anxiety faced by most Autistic people, yet are denied access to the community, services and legal protections that would assist them in managing those challenges,” he said.
“Being Autistic is not something one outgrows – it is an intrinsic and inseparable part of the way our brains work. Being deemed ‘non-Autistic’ just means that a person’s internal struggles to pass are no longer acknowledged by a broader society that has prioritized the comfort of the non-Autistic population than the needs and preferences of Autistic people ourselves,” he added.
Ari’s concern about what happens when people lose their formal diagnosis is an important one. As much as I don’t want to think that labels are important, the autism “label” is the key to my kids’ support. The plans they have in place at school help them and their teachers. When my kids have a day at school that goes super-smoothly, that’s a credit to my kids and their entire educational team. It means that everyone involved is working really, really hard–not that suddenly my kids’ brains are functioning differently.
Kids with autism who grow into socially adept adults have worked to gain those skills, and people around them have made it their life’s mission to help with that. To say they “outgrew” their autism implies otherwise. Case in point: my kids had allergies. They outgrew them. They didn’t do anything. They just outgrew them.
All four of my kids are absolutely awesome. For two of them, Asperger Syndrome is part of who they are. While I want to help them with the issues that may come with that, like anxiety, I have no interest in changing the way their minds work. Their minds are amazing. They are both incredibly smart and thoughtful. My 11-year-old daughter burns with curiosity about the world around her. My 6-year-old son has an attention to detail that will most certainly benefit him in the work world.
Why would I want them to lose that?
(Photo Credit: iStockphoto)
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