SEPTEMBER 28, 2013 12:58AM (UTC)
Two years ago, Vicki Hanegraaf’s son Kade was, as Dr. Seth Dailey wrote in his medical case report last March, “a 14-year-old boy with Autism Spectrum Disorder and vocal tics.” The “vocal tic frequency was nearly 2,000 per day and 90 dB in volume.” That’s roughly the sound level of a lawnmower or motorcycle, a level at which sustained exposure is likely to cause hearing damage. A level he and his family – including his autistic twin brother — lived with more than a thousand times a day, for three and a half years….
Yet when the story of the Hanegraaf family appeared in the Wisconsin State Journal Friday, under the provocative headline “Surgery reduces autism-related screaming,” it drew a heavily divided and often deeply critical response. Was the surgery an innovative response to a deeply stressful condition — or an ethically troubling precedent that called to mind dangerous inventions of the past? On Autistic Hoya, autistic writer and advocate Lydia Brown wrote, “There are other ways to address the issue than forced surgery… The surgery was performed because Kade was an inconvenience to his parents….This is torture.”
The story first caught my eye when my friend Steve Silberman, author of the upcoming book “NeuroTribes: Thinking Smarter About People Who Think Differently” and a frequent writer on autism, pointed it out on Facebook. His opinion on the surgery was decisive and firmly opposed. When I asked him to elaborate his thoughts, he said, “Autistic people are already struggling to articulate their needs to the people around them. What if there was a fire, or they had difficulty swimming and needed to call out for help? If your kid had a problem with ‘wandering,’ would you surgically hobble them? Yes: parents clearly need more help and support in raising their autistic kids, and more effective and compassionate ways of coping with behavior that can cause intense stress. But treating autistic people like dogs that need to be debarked is grotesquely inhumane.”
Silberman then put me in touch with Ari Ne’eman, an autism rights activist and co-founder of the Autistic Self Advocacy Network. He told Salon Friday, “The Autistic Self Advocacy Network views this surgery as profoundly unethical and bluntly are concerned that the UW Hospital approved it. Autistic people and others with communication related disabilities often use what’s termed as ‘problem behavior’ as a way of communicating distress, anger, fear, anxiety or other important emotions that may not be easily communicated for someone without standard speech. There is a long history of family members and providers viewing these behaviors as strictly a medical phenomenon and not recognizing they’re important for communication. To violate a person’s bodily autonomy and damage their ability to communicate to serve the convenience of the caregiver is nothing short of horrific. We view this as similar to the Ashley X case or the long history of involuntary sterilization, teeth removal and other inappropriate and unethical medical procedures conducted against people with developmental disabilities.” …