John Donvan and Caren Zucker are the co-authors of the new book “In A Different Key: The Story of Autism.”
So far this election cycle, Hillary Clinton has been the only candidate to offer a detailed position on autism. Odds are she won’t be the last, considering that the Centers for Disease Control and Prevention estimates that there are more than 3 million Americans with a diagnosis of autism spectrum disorder, and most of those people have families. That’s a constituency worth wooing.
But let the wooers be warned: Autism has its own politics, and they are fraught.
Throughout the approximately 75 years that the diagnosis has been on the books, the “autism community” — a term suggesting comity, cooperation and cohesion — has time and again been roiled by dispute. In years past, the clash between those who believed vaccines caused autism and those who didn’t reached epic proportions. And there has long been enormous tension between those who want to find a cure for autism and those who see autism as a neurological variation representing but one more way of being human.
The autism world, like the world in general, needs less discord. And so, as two writers with personal interests in diminishing the strife in this conversation (both our families are affected by autism), we offer the candidates some pointers:
●Be careful with the word “cure.”
As politicians, you know that words matter. You should be aware how much furor surrounds this one word. Pay heed to the burgeoning neurodiversity movement. A good many autistic people reject the idea that autism requires a cure. Rather, they embrace their brain wiring as essential to who they are, and they do so even if the challenge of social interaction with what they call the “neurotypical” world causes them pain and frustration or costs them opportunities.
What is needed, they argue, is not a cure but an overhaul in attitudes such that people who are neurologically different are accepted and supported as they are. They believe that attempts to cure autism, or to suppress its distinctive behaviors with drugs or behavioral therapy, are tantamount to obliterating autistic identity. If you use the word “cure” in a speech on autism, you should not be surprised to be called out for “ableism.” Champions of neurodiversity want to hear instead that you respect and celebrate autistic difference.
●Be careful with the other c-word too.
We just used it: “celebrate.” You will sound wildly off-key to some if you say this too often. Consider the parents of children who cannot speak, who hurt themselves relentlessly, who wander away from home and too often are found dead, who need help feeding themselves and who will have to wear diapers for the rest of their lives. Though these parents are adamant that their children deserve support and acceptance, they nevertheless see autism as a source of pain and struggle in their children’s lives, and they would do anything to change that. For them, autism is an emergency.
●Do not give new life to discredited ideas.
In 2008, then-candidates Clinton and John McCain made statements leaving open the possibility that vaccines had unleashed an autism “epidemic.” (There is some argument over whether candidate Barack Obama did the same. Most think not.) Even then, science did not support that conclusion, but the public was sharply divided, and a vocal contingent of parents believed vaccines had harmed their children. Now the science disproving the link is overwhelming. Any candidate sounding the vaccine alarm today risks reigniting old controversies. It’s scaremongering.
●Seek common ground.
This won’t be easy, given how polarized the conversation has become. The good news is that many people concerned about autism see the infighting as counterproductive. There are ways to address both camps, not only rhetorically but also with policy prescriptions. Calls for epidemiological studies focused on measuring the prevalence of autism or surveys designed to identify supports needed by the autism community will find few objectors. But be warned: Research into the genetic underpinnings of autism is a contentious subject. Some hope that gene therapy can diminish the array of struggles that autism presents to many children. Others fear that identifying the genes responsible for autism could lead to a prenatal test, with alarming consequences.
●Remember the adults.
In our view, one of the most urgent and least controversial policy needs is more services for adults with autism. Such adults are too often treated as if they are invisible. It’s the children with autism who tug at our heartstrings; advocacy organizations know it, and you do, too. But those kids grow up. A half-million Americans with autism will turn 21 over the next 10 years, many of them in desperate need of appropriate housing and employment opportunities. Many of them could live with a greater degree of independence if there were more funding for affordable housing tailored to their needs. Many could have the satisfaction of a productive job if given the necessary training and support, and if corporations could be persuaded to make room for people with narrowly focused but highly developed skills. Don’t forget the children, but if you don’t remember the adults, you’ll be disappointing a large chunk of the autism community — which, on this question, happens to be united.
Hillary Clinton might have been the first candidate out of the gate on autism issues, but we hope the other candidates will keep the conversation going.