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

HHS mandate bypasses parents on contraceptives for children

Excerpted from "HHS mandate allows minors free contraception, sterilization," Catholic News Agency, Sep 25, 2012--Minor children on their parents’ health care plans will have free coverage of sterilization and contraception, including abortion-causing drugs, under the controversial HHS mandate – and depending on the state, they can obtain access without parental consent.

Matt Bowman, senior counsel for the religious liberty legal group Alliance Defending Freedom, said the mandate “tramples parental rights” because it requires them to “pay for and sponsor coverage of abortifacients, sterilization, contraception and education in favor of the same for their own children.”

The Department of Health and Human Services ruled in January 2012 that most employers who have 50 or more employees must provide the coverage as “preventive care” for “all women with reproductive capacity.” The mandate also requires the coverage for beneficiaries, including minors, on the affected health plans, Bowman told CNA Sept. 20. That means that a minor on her parents’ plan could be sterilized if she finds a doctor willing to perform the procedure.

“She can be sterilized at no cost,” Bowman stated. “Whether her parents will know and/or consent might differ by state. But the Guttmacher Institute and other abortion advocates explicitly advocated for this mandated coverage of minors so that access without parental involvement might be able to increase.”
The Guttmacher Institute, in a Sept. 1 briefing on state policies, said that an increase in minors’ access to reproductive health care over the last 30 years shows a broader recognition that “while parental involvement in minors’ health care decisions is desirable, many minors will not avail themselves of important services if they are forced to involve their parents.” The institute, the former research arm of abortion provider Planned Parenthood, said that 26 states and the District of Columbia allow all minors 12 years and older to consent to contraceptive services. At least one state, Oregon, allows 15-year-olds to consent to sterilization.

There are presently 30 lawsuits challenging the HHS mandate in federal court on religious freedom grounds.

Commentary

CMDA Executive Vice President Gene Rudd, MD: “'Beware of Greeks bearing gifts.'
"Sadly, in today’s society, we as parents have to warn our children to avoid adults who try to lure them into doing things that might be dangerous, even deadly. Stereotypically, it is the shady character on the street corner who invites your child to pet his dog or enjoy his candy.

"But what do we do when it is the government or an agency operating with government funds doing this? They also have an agenda, and they wish to entreat our children to take part in that agenda even when we as parents do not approve. And worse, our laws have morphed to make it legal! Yes, there are some differences between their agenda and that of a pedophile, but the outcomes can be just as destructive to the wellbeing of the child and the family.

"So now we must warn our children that adults serving in public positions, those with an element of authority over their lives, might also lure them into behavior contrary to their moral training and dangerous to their health. And as a more definitive step, we must take steps to reverse this social engineering.

"I realize there is an argument to be made for providing care for children in exceptional circumstances, but allowance for the exception has become the rule for all. We must now require our government leaders to scrap the onerous rule that allows for this (included in the Affordable Care Act) and replace it with healthcare reforms that do not undermine the family."