FYI: Fully funding research for autistic people of all ages would help a lot more than just sporting a pin
Who can be mad at something as gauzy as “awareness,” especially when it’s tied to a serious disability like autism?
Given that we’re faced with an administration who is looking to cut everything the government does to aid our physical and mental health, the sight of the White House being turned blue for the first time to spread consciousness about those living with autism should be heartening, right?
But this gesture isn’t warming the hearts of many of those with autism or those who advocate on their behalf. Here’s why.
President Trump began Autism Awareness Month with a proclamation that included the word “cure.” It’s a word that’s “like an atomic bomb in the autism community,” Steve Silberman author of the acclaimed book Neurotribes: The Legacy of Autism and the Future of Neurodiversity told me.
“Trump’s statement about ‘cure’ and his tweets about autism represent a retrograde, misinformed step backwards for autistic people and their families,” Silberman added.
The Autistic Self Advocacy Network called the White House use of the term “a dangerous fringe position.”
I know. This focus on a single word may seem nit-picky given how natural it is for any parent to hope that they will soon find something that will alleviate any suffering for a child and her family. But this framing, and the false hopes it projects, has vast consequences.
“Autism is not a disease,” ShareBlue‘s Matthew Chapman wrote. “It is a different way of being a person, like many other facets of identity. What’s more, many of the quack therapies sold to parents to ‘cure’ autism over the years, from bizarre diets to chelation to deep-tissue castration shots, were outright torture of children, in which some of them died due to these treatments which were supposed to ‘help.'”
This “disease” frame has huge ramifications for research budgets. Silberman noted in a 2015 L.A. Times op-ed that “Less than 2% of the studies funded by the National Institutes of Health in 2010 were devoted to improving the lives of adults on the spectrum.”
Meanwhile, autistic adults without adequate resources can easily be doomed to lives of dependency.
“There are very few programs to help young autistic people transition out of school and into the workplace, even if they’re fully capable of working and very eager to work,” Silberman said in a 2016 address to the United Nations. “Likewise, there are very few options for autistic people who are unable to live without significant support. Many parents of autistic children have told me that they lie awake, night after night, worrying about what will happen to their son or daughter after they die.”
Waiting around for medical breakthrough or treating autism like it’s game of Clue that will all be all okay once one discovery is made is just cruel to those who are not living the lives they could be living now.
“Imagine if society had put off the issue of civil rights until the genetics of race were sorted out, or denied wheelchair users access to schools and public buildings while insisting, ‘Someday, with the help of science, everyone will walk,” Silberman said.
This is why he calls the autistic community “one of the largest disenfranchised minorities in the world.”
Trump’s approach to “awareness” is already antiquated and ultimately could be as harmful for those who deal with autism as his pick for the Supreme Court Neil Gorsuch, whose ruling in Thompson R2-J School District v. Luke P. would leave autistic students “sitting idly … awaiting the time when they were old enough to ‘drop out,'” according to Chief Justice John Roberts who wrote for 8-0 majority in the case.
“We need to move beyond autism ‘awareness” to autism acceptance,” Silberman told me,” and reallocate scarce research dollars toward improving the quality of life for autistic people all across the lifespan, promoting better opportunities for autistic people in the workplaces, better housing so people can stay in their communities instead of institutions and finding ways to help autistic people live happier, healthier and safer lives.”
This focus requires that people on the autism spectrum be included in decisions about their lives. Trump has yet to take this approach and to be fair, only one candidate for president ever has.
You can probably guess who that candidate was.