March 15, 2017

CC BY-NC-ND by uckhetjournal of published medicine,

The decision of a Wisconsin mother to have her son’s vocal cords relaxed via surgery has caused a sense of unease within the Autism community, with some calling into question the ethics behind the decision and tome calling it tantamount to torture.

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 auditory frequency was nearly 2,000 per day and 90 dB in volume. The screams would be consistent, around a thousand times a day and at  the same level of constant noise as a lawn mower, or a motorcycle, which can lead to permanent hearing damage. His parents and twin brother who also has Autism had to live with the tic for just over three and a half years.

The surgery was documented in the Journal of Published Medicine, earlier this year and involved surgery called thyroplasty, where the vocal cords are paralysed, and then separated by a thin film of mesh to stop the cords from touching during a tic.

According to Daley and his team of researchers, the screaming was an involuntary spasm caused by Kade’s Tourette’s Syndrome which is commonly diagnosed alongside Autism and ASD.

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.”

Ari Ne’eman, an autism rights activist and co-founder of theAutistic Self Advocacy Network. was interviewed by The Salon on Friday September 27 and said:

“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 “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 “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 behaviours 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.’ 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.’ 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 “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 behaviour’ 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 behaviours 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. 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.”

 

About the author 

Shân Ellis

Shân Ellis, is a qualified journalist with five years experience of writing features, blogging and working on a regional newspaper. Prior to working as a journalist, she was a ghost writer for top publishers and was closely involved in the editing and development of book series. Shân has a degree in the sciences, and 5 A levels. She lives in the UK and is the mother of an autistic child.

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