by Sara Cann
If you hear the possibility that there is a group of people who object to a cure—for journalists it is a sizzling story.
Aspies for Freedom, an organization founded in 2004 and part of the Autism Rights Movement opposes a cure for autism, started an online petition against the organization, Cure Autism Now! (CAN), denouncing the organization’s mission to find a cure for Autism Spectrum Disorders.
Two-hundred and seventy-nine people signed this petition with messages like “We’re just Different! Not ill!” and the poignant signature from The Masked Avenger: “Why do you hate us? Why do you have to make us out like monsters and a burden to society when, in reality, you are the true burden?”
The controversy is shocking and unheard of by some. Why would someone not want a cure? But Aspies for Freedom explains on aspiesforfreedom.com that “being autistic is something that influences every single element of who a person is – from the interests we have, the ethical systems we use, the way we view the world, and the way we live our lives. To ‘cure’ someone of autism would be to take away the person they are, and replace them with someone else.”
But the question of “cure versus no cure” is too simple a phrase and misrepresents the ARM.
Like most movements, the ARM seeks acceptance for neurodiversity. Dr. Valerie Paradiz, creator of Integrated Self-Advocacy and author of Elijah’s Cup, said in her opinion the movement’s goals are to foster awareness about ASD.
When the media focuses on the few people who protest against organizations using money to research for a cure, it tires the rest of the people in the movement trying to make new roadways for better accessibility in a world of mostly non-autisitc people who may not understand autistic culture, Dr. Paradiz explained.
To write a story that covers both sides of the debate whether there should be a cure appeared to be an easy assignment until I started interviewing both sides. What I came to realize is that opposing sides seemed to agree with each other more than disagree. The problem with this debate is a lack of a concrete definition of what a “cure” is to each side.
Phil Schwarz, an autism advocate who has Asperger’s Syndrome, describes the “cure autism” debate as a false dichotomy. It is too simple to make a statement of whether there should be a “cure versus do-nothing,” he said.
Schwarz’s son is on the spectrum and he said that if his child is in constant sensory distress or has yet to develop self-care skills then those are areas he says need to be worked on and mitigated.
“But I don’t see a need to root out my child’s *differentness* —his love of things that his age-peers are not interested in or have decided are no longer “cool;” his aesthetic sensibility centered around patterns, order, sequence, repetition, and variations-on-a-theme; the unique strengths of his memory; his offbeat and very real sense of humor. All that stuff is autism, too,” Schwarz said in an e-mail.
People within the ARM believe that autism is inseparable from a person.
Jim Sinclair, founder of Autism Network International and leader in the ARM, described this sentiment in a speech he gave at the International Conference on Autism in 1993. Sinclair caught the attention of parents with autistic children with his essay, “Don’t Mourn For Us.”
“Autism is a way of being. It is not possible to separate the person from the autism,” Sinclair said in his speech.” “Therefore, when parents say, I wish my child did not have autism, what they’re really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.”
On the other side of the argument, Kevin Gersh—president of the Gersh Academy—said he would support research for a cure. But his ideologies were not far-removed from the opposing side.
“Any individual with autism or not, if he has skill deficits in certain areas that interfere with his life, working on those skill deficits is a positive thing,” Gersh said, agreeing with Schwarz’s idea of easing disabling factors like sensitivities to light or anxiety attacks.
The Gersh Academy is a school that customizes education around their students who have a range of neurobiological disorders.
“I have students that go to my school that are wonderful men and women and if I could give them a pill that would take away their anxiety and rigidness then I would totally give it to them. They struggle with it. They struggle with not being able to go to lunch to gym. They want to go to gym, but you know their brain doesn’t allow to go ‘OK, time for gym,’” Gersh said, who admitted to having a neurobiological disorder and a fifth-grade written expression.
Organizations like The Autism Program (TAP), Autism Speaks and Defeat Autism Now! are other organizations that support research for a cure.
Georgia Winson from The Autism Program of Illinois said in an e-mail interview that TAP supports “serious research to identify the causes, treatments and an eventual cure for ASD.” The research TAP conducts is to provide increased independence and increased quality of life, she added.
Thirty years ago, people did not know what autism was. Now, the word is floating around our society and it is building into a political movement to increase accessibility, employment and equal rights opportunities.
Dr. Paradiz compared the movement to the Women’s Rights Movement, Gersh alluded to the Civil Rights Era and Schwarz compared the movement to activists in ACT UP (AIDS Coalition to Unleash Power). All three movements describe a minority of people who are banded together to get the world to listen to their needs and understand their cause.
“The real question is far more nuanced: what exactly do people mean by “cure”? So many other disabling conditions are viewed in purely medical terms by our society that the conventional wisdom is to do the same with autism. But autism is far more than just the disabling factors secondary to it. Autism involves differences in cognitive style, aesthetic sensibilities, experience and expression of emotions, sensibilities regarding social behavior, and more,” Schwarz said.
Perhaps the world needs to take a breather from thinking of autism as just a medical condition and think of it as a facet of human nature—a culture. A culture of people who needs the support of everyone—no matter their ideologies—to be accepted in a largely non-autistic community.
The common goal of both sides of this argument boils down to helping people on the spectrum live fuller, more meaningful lives. Debating about whether there should be a cure—in Dr. Paradiz’s words—is tiresome business—and not newsworthy. Talking about how two sides on opposite platforms seem to meet in the middle without even knowing it—is newsworthy. Why? Because most of the people I spoke to on both sides of this argument said better communication was needed inside and outside the ARM. Perhaps this article will inspire better communication around the community since these opposing sides seem to have similar goals.