Autistic boy “debarked” to prevent screaming

Excerpted from “Autistic boy ‘debarked’ to prevent screaming,” BioEdge. October 5, 2013 -- Controversy has arisen around a procedure performed on an American autistic boy to stop him from screaming. At the request of his parents, Kade Hanegraaf had his vocal cords separated so as to greatly reduce his ability to scream.

The family chose the operation after three years of enduring the boy's uncontrollable screaming—a high pitched cry louder than a lawn mower that he would make more than 1,000 times a day. According to the boy's mother, Vicki Hanegraaf, the behavioral problem was destroying the family. They were unable to take the boy anywhere, and his brother, also autistic, was highly sensitive to the loud cries.

According to a case report in the Journal of Voice, the boy can now only produce a scream half as loud, and his “episodes” have been reduced by 90 percent. The operation, called a thyroplasty, is said to be reversible. The boy's family is happy with the outcome, but others in the autistic community have criticized their decision. Some have described it as torture and compared it to debarking a dog.

Bioethicist Arthur Caplan defended the decision: "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."

However, an autism rights activist told Salon that the operation was profoundly unethical. “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.”

Commentary

CMDA Member and former member and chair of the CMDA Ethics Committee Nick Yates, MD, MA (Bioethics): “Parents should be and are allowed to make healthcare decisions for their minor children (and those who cannot be granted decision-making authority) under a best interests model. Traditional and more commonplace care is easier to accept, but sometimes not only is the treatment a bit unusual and unconventional, but the best interests extend from the individual to the family. Patient autonomy and decision-making capacity are extremely important considerations, and thoughtful communication is how these notions are expressed and preserved. However, if one can only communicate in deafening screams and exhibits little social grace, how is autonomy and decision-making imputed in a meaningful manner? These are extremely difficult decisions where pundits—nearly all of whom have not and will never experience the extreme medical situation—love to wage commentary.

“The family followed traditional care recommendations—behavioral and medical management—for nine years with no persistent improvement. Following surgery, vocalization frequency and intensity dropped significantly, socialization improved, he began to speak better and his appetite improved.

“Children do indeed need protection, and social services are appropriate, but children also must have an advocate, and so rights activists and external guardians may be necessary. In this case, neither is necessary as the family's choice is ethically permissible (and medically reversible), and should not be condemned.

Resources
CMDA Ethics Statement on Parental Limits
Autism’s Hidden Blessings by Kelly Langston
Complete Guide to Baby & Child Care