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Opinion: Surgery to stop autistic boy's screams was the right decision

A Wisconsin mother says that surgery helped quiet her autistic teenage son's ceaseless screams, a decision that has attracted criticism from many, including families within the autism community. But for this particular teenager, and this particular family, it was the right choice to make. 

Three years ago, Kade Hanegraaf started screaming. And he didn’t stop: The autistic teenager from Appleton, Wis., would scream at the top of his lungs more than 1,000 times a day. His sharp cries were louder than a lawn mower, and the behavioral problem was destroying his family.

Screaming is common among some autistic people, and Kade became obsessed with the sound, his mother, Vicki Hanegraaf, told the Associated Press. No amount of rewarding or reasoning could get the noise to stop. They couldn’t take the teenager anywhere, and they couldn’t stand the noise -- it was especially bothersome to Kade’s twin brother, Kyle, who is also autistic and is sensitive to noise.

So, at the end of their rope, the parents sought out professional help, which eventually led them to a surgical solution. Dr. Seth Dailey, a University of Wisconsin-Madison surgeon and ear, nose and throat doctor, examined Kade, heard him screaming and suggested a procedure that would quiet the screams by separating the cartilage in Kade's vocal cords. This would create a larger gap through which air could flow, and this bigger gap would limit the level of sound of the boy’s screams.

In 2011, Kade’s parents decided to go through with the reversible surgery, and since then, Kade, who is now 16, has screamed 90 percent less often and at half the volume. His mom says her son can no longer produce a very loud scream, which seems to have tempered his obsession with making the noise. 

“He still has a full voice and still makes a lot of noises the way people with autism do, but we can handle him at a restaurant or in public now,” she told the AP. He's also eating and talking more, Dailey said. 

This decision has brought the Hanegraafs a lot of grief from some other families who have autistic children. Some have likened what was done to debarking a dog, a procedure in which the vocal cords are irreversibly destroyed. Others said that surgery was treating a symptom, and if something was making Kade scream incessantly, taking away his ability to do so without pinpointing the cause for the screaming was cruel.

But when a teenager screams 1,000 times a day -- or more -- at the top of his lungs, that needs more than a lifestyle adjustment. When he is making his twin autistic brother anxious, something needs to be done. And if a reversible surgical procedure can help Kade interact with others, stop frightening his brother, better interact with other people and return sanity to his caregivers, then I say that is a great use of surgery.

What's more, it is not clear that Kade could even control his screaming -- the yelling may have been more like a tic than a choice. No cause for the screaming could ever be found, and no particular environment seemed to set Kade off, leading his parents and doctors to believe that the yelling was more of an obsession or compulsion than a cry for help. And if the behavior was indeed beyond the teenager's control, the more a reversible surgical intervention makes moral sense. 

It is tempting, especially given the abuse of people with cognitive disabilities and mental illnesses by some in medicine over the much of the 20th century, to feel outrage at the idea of forcing surgery on an otherwise healthy young boy. But 21st century medicine gave Kade and his family a solution that has already allowed the boy to live a richer life -- and the solution can be reversed at any time. That seems to me to be cause for celebration, not condemnation.

Arthur Caplan, Ph.D., is the head of the Division of Medical Ethics at NYU Langone Medical Center.