Arie Neeman, president of the Autistic Self Advocacy Network (ASAN), found himself on a talk show a while ago. During one exchange, the host of the show expressed his surprise that Arie would not take a pill to cure his autism if such a pill was made available. Arie was clearly miffed by the host’s reaction. Arie put it this way. Autism is “part of who we are. I think there’s something deeply unethical and very troubling with rewiring the fundamental aspects of how somebody thinks and perceives the world.”
During her interview on Sixty Minutes noted author, professor, and speaker Temple Grandin, who like Arie has a form of autism known as Asperger’s Syndrome, was asked a similar question by Lesley Stahl. “What if there was a cure for autism…maybe a pill or surgery?” Grandin’s response, “I like the logical way I think and I would not want to give that up.” Grandin also took a broader view, citing the contributions of people with autism to the larger society.
In my own family, I have a son, Jimmy, with autism. On a family road trip some years ago, my youngest daughter asked me, out of the blue, “If there was some way you could remove Jimmy’s disability (autism), would you? The question blew me away, so much so that I fumbled with my response. What I do remember, however, was my daughter’s straightforward answer. “I see Jimmy’s disability as more of a gift.”
I am not, by any means, trying to sugarcoat autism. And the autism spectrum is just that, a wide range of abilities and disabilities. For each individual with autism, the dynamics are different, ranging from the nature of the disability to the educational, health, and community support system. But too often our perception of autism is limited, limited by the media, limited by our lack of knowledge of autism, limited by our personal experiences, and limited by a world which holds up normality (whatever that is) as the goal.
Arie is of the belief that autism is not so much a condition that needs to be cured, but rather; a culture that we should embrace and value. Moreover, he is hopeful that our perceptions will change as people with autism are heard. That is the idea behind ASAN’s motto, “Nothing about us without us.”
As has been mentioned Autism is part and parcel of the individual and it would be difficult to imagine an alternative “you.” A good discussion exercise may be to ask if you could take a pill that would make you a different race, would you? What factors are you considering in your decision? The feedback will expose a lot.