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

 @rpalmerscience on September 30 2013 5:45 PM

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 it tantamount 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. He and his colleagues reported on the surgery in the Journal of Voice earlier this year, but the operation recently gained attention thanks to an article in the Wisconsin State Journal of Madison.

According to the paper from Dailey and colleagues, Kade Hanegraaf’s screaming was an involuntary vocal “tic” stemming from Tourette syndrome, which is often crops up in people with autism spectrum disorders. Before the surgery, his screams could reach up to 90 decibels in volume – louder than a hair dryer. Six months after the thyroplasty, the frequency of his screams dropped by 90 percent, and what tics remained were half as loud as before, according to the paper.

“Additionally, he has shown improved ability to converse with his peers, participate in school activities, and even has improved nutritional status,” Dailey and colleagues wrote in the Journal of 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” operation sometimes performed on dogs. And the framing of Kade’s story in the media has largely ignored his own bodily autonomy. Autistic writer Lydia Brown pointed 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 the patient himself, not just his parents.

If the tic wasn’t harmful to Kade, “there are other ways to address the issue than forced surgery,” Brown wrote. “I've heard from other autistic people writing that they learned coping skills and ways to avoid some types of self-harming, for example, from other autistic people. Noticeably not from therapists, clinicians or other professionals.”

In an interview with Salon, Dailey (who himself has an autistic child) noted that the procedure is reversible.

The tic “was by [Kade’s parents’] judgment deleterious to him, not to mention his brother, who is sensitive to noise, as many autistic children are,” Dailey told Salon. “It was impairing his ability to get support and get things he needed. His support train had derailed during this time because it was literally impossible to be around as a caregiver.”

The family had also tried behavioral treatments, medications and injections of Botox inside the throat before they came to Dailey, the surgeon says.

Autism advocates are wary of medical “corrective” procedures, some of which are seen as more of a way to normalize autistic people than to truly benefit the patient. And many of the conversations about autism – whether in charity groups, government buildings or research journals – tend to leave the thoughts and desires of people with the condition out of the equation.

But “when you see your child tormented, hardly able to eat without screaming, with this taking over his whole life, it’s unethical to let him suffer like this,” Kade’s mother, Vicki Handegraaf, told Salon. “When you see it trickle down to his brother, this was a life sentence. I didn’t see my son smile for three and a half years. Now, he has a whole new life inside him.”

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