The Search for a "Cure"

When “Advocacy” is not Really Advocacy

To a close-knit family, an untimely diagnosis can change everything — like a rudder abruptly changing the stalwart course of a mighty ship. Not only does the diagnosis redirect the family’s plans, hopes, loves and dreams —but gives birth to new areas of activism and advocacy.

Autism Speaks, an organization that purportedly advocates for autistic people and their families bespeaks such a story. Founded in 2005 by Robert and Suzanne Wright, after learning of their own grandson’s autism diagnosis, the organization’s initial mission was to increase autism awareness and search for a “cure.” Autism Speaks has grown into the largest autism advocacy group in the U.S. with an annual budget of $60 million.

This past summer, after my son was diagnosed on the autism spectrum I found myself similarly in the altruistic trenches of activism. This activism took the form of combing through countless journal articles, joining organizations such as the local chapter of the Autism Society, downloading resources from Autism Speaks, purchasing books, and watching YouTube videos. Early on, I sought to foster a sense of self-advocacy in my son; thus, I encouraged him too, to read the same resources so he could be more informed and more independent.

It was not long, however, before my encouragement for him to self-educate morphed into cautious warnings about what it was he would be reading about people like him (and me, I found out later). Troubled, I realized many of the articles could leave him with the impression he was defective, broken, requiring repair, hence a “cure.” I only hoped he would not discover that millions of dollars were being spent on research for the development of prenatal screenings. Why prenatal screenings? So parents suffering the horror of discovering they might have — God-forbid — an unborn child with autism, could exercise “options.” 

It was surreal enough to me, as a mature adult, to realize that folks out there deemed folks like me in need of a “fix;” I feared how my son would see himself through the duplicitous messages in these “advocacy” resources. Remarkably, these resources were not penned and published by openly ideological descendants of Margaret Sanger (founder of Planned Parenthood). Never claiming to advocate for the feeble-minded or handicapped, the leaders of the eugenics movement at least openly stated their case for the eradication of defectives from the breeding pool. Remarkably, the articles and websites I encountered emanated from advocacy organizations — such as Autism Speaks! I now saw the need to shield my son from the very materials that should have made him feel accepted, loved and valued. I could only hope in a moment of stubborn typical teenage orneriness, he disregarded my former charges for self-advocacy, and did not seek out these resources.

Today, my activism has taken a bit of a turn, recognizing the importance of joining thousands of others in the effort to recast autism in a light different from that proffered historically by Autism Speaks. Fortunately, the organization has recently changed its messaging in response to the outcry of many in the autism community who do not believe they need to be cured, but rather accepted. Fortunately, there are many effective foot-soldiers in the form of researchers (Simon Baron-Cohen), clinicians (Tony Attwood), and authors (Steve Silberman) who, in the spirit of true advocacy, are trying to rebrand autism not necessarily as a neurological disorder but as a differing neuro-type. These respectfully suggest that members on the spectrum are not the diseased and disabled consequences of vaccines gone wrong but rather merely represent the tremendous variability of what it is to be beautifully human. 

Notes
1. Gross, J., & Strom, S. (2007). Autism debate strains a family and its charity. New York Times, 18. 
2. Perry, D. M. (2015). Fix the charity that wants to ‘fix’ autism: Most autistic people want acceptance and inclusion, not a cure. Retrieved from http://america.aljazeera.com/opinions/2015/10/fixing-the-charity-that-wants-to-fix-autism.html
3. West, J. G. (2014). Darwin day in America: how our politics and culture have been dehumanized in the name of science. Open Road Media.
4. Wakabayashi, A., Baron-Cohen, S., Uchiyama, T., Yoshida, Y., Kuroda, M., & Wheelwright, S. (2007). Empathizing and systemizing in adults with and without autism spectrum conditions: Cross-cultural stability. Journal of autism and developmental disorders, 37(10), 1823-1832.
5. Silberman, S. (2015). Neurotribes: The legacy of autism and the future of neurodiversity. Penguin.