Make Them Fear, Make Them Silent: Shaming In The Age Of Autism
I’m 20, a rising sophomore in Motion Design at Ringling College of Art and Design, and the only sibling to an older brother with low-verbal autism.
Whether I’m away at school, or travelling far from home, I always stay in touch with my family and monitor the news. I’ve noticed an alarming pattern that seems to be forming. There appears to be a considerable attempt to shame parents for their concerns regarding medicines, and what is safe for their children to receive in terms of vaccinations and prescriptions.
I find it disheartening as a sibling that there isn’t more compassion coming from the medical professionals. Shouldn’t the parents feel comfortable asking if the recommended medicine is safe for their children to take? Why is there this attempt to make parents refrain from asking any questions, and why is there such an effort to shame them? I’ve noticed there are more stories being unearthed about doctors disregarding previous diagnosis, and children being held hostage by hospitals as in the Justina Pelletier case.
The Justina Pelletier case involves a 14 year old girl who was suffering with mitochondrial disease. After a setback, she was taken to Children’s Hospital in Boston. Despite what the parents reported to the medical professionals, the doctors believed that the child’s problems were psychiatric and not gastrointestinal. They ordered a complete change of protocol in spite of parent objections. The parents wanted Justina discharged from the hospital so they could seek care elsewhere.
According to reports in the Boston Globe, this resulted in “A medical collision with a child in the middle”. Journalist Niel Swidey wrote that doctors at Children’s Hospital, “contacted the state’s Child Protection Agency to discuss filing ‘medical child abuse’ suspecting that Justina’s parents were interfering with her medical care and pushing for unnecessary treatments.” These allegations led to Justina being taken from her parents and placed in emergency custody by the state. After a 16 month battle, the case was resolved in favor of the parents, but there are many more stories like Justina’s.
As a young woman witnessing this behavior from medical professionals and hospitals, it makes me frightened to think of what I might face with my own children. After witnessing my parents’ continued struggle to get adequate care for my brother, I have many questions about family history and medical vulnerability. Will I be shunned and threatened for asking questions? Will I be shamed for having concerns? Who can I trust? Should I be expected to keep quiet and accept the possibility of tragedy, no questions asked? What if tragedy strikes? Am I allowed to ask questions then? The excuse for maligning parents with questions is always “the greater good”. Is it ever the greater good to shame people into silence?
All a good parent wants to do is make sure their child is getting proper care. It really bothers me that parents are not just judged, but vilified for daring to even ask questions. Why shouldn’t parents be concerned about the safety of what is being injected into their children’s bodies? If parents must sign acknowledgement of medical risks, why can’t they ask questions? Why not treat parents and their concerns with the respect they deserve? No one should be shamed for asking questions and wanting to be more informed.
Natalie Palumbo is a Contributing Editor to Age of Autism.