Tuesday, October 1, 2013

Surgery To Stop Autistic Boy's Screaming Tic Raises Ethical Questions

What would you do if your child couldn’t stop screaming? The parents of a 16-year-old boy with autism are breathing a little easier after a vocal cord surgery virtually eliminated his tendency to scream nearly 2,000 times a day. But the idea of separating a child’s vocal cords to quiet him can be troubling, to say the least. Some autism rights advocates are furious, calling ittantamount to torture. Seth Dailey, a surgeon at the University of Wisconsin Hospital, performed the operation on Kade Hanegraaf in 2011. The operation, called a thyroplasty, involves spreading the vocal cords apart and inserting a mesh shim to keep them from touching during a spasm. The result is a larger gap between the vocal cords, resulting in a softer voice. But many activists, including autistic adults, are troubled by a lack of information on whether or not Kade gave consent for the operation. It’s hard not to cringe at a procedure that resembles the “debarking” operationsometimes performed on dogs. And the framing of Kade’s story in the media has largely ignored his own bodily autonomy. Autistic writer Lydia Brownpointed out on her blog that neither the Wisconsin State Journal article nor the research paper address the question of whether the tic was harmful to thepatient himself, not just his parents.

Read more here.