A study in the current issue of Pediatrics reports that parents of premature infants place a ‘significantly’ higher value on their children’s lives, regardless of disability, than do health care workers who are involved in neonatal care decision-making.

Most health care workers surveyed said that having multiple disabilities is worse than death, whereas most parents of premature infants said that death would be worse than living with disabilities.

Researchers reported that parents of premature infants were most likely to want to save an infant at all costs. They say parents of premature infants who have experience caring for children with disabilities should be included in counseling new parents of critically ill infants.

Their participation is needed, the researchers say,

“so that a balanced view could be presented to parents of critically ill infants and increase the probaility that they would make informed decisions that they would not later regret.”

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Newsweek magazine profiles Ari Ne’eman, the 21-year-year-old founder of the nonprofit Autistic Self-Advocacy Network. Ne’eman is a master networker who wants to convince the world that autism is not a medical mystery that needs to be cured, but rather a type of “neurodiversity” that should be accepted by society.

Ne’eman, who has Asperger’s syndrome, is troubled by the ethical implications of genetic research into autism. He fears that a prenatal test for autism could lead to “eugenic elimination,” which would mean people like him might cease to exist. Autism is not a fatal condition, he says. Should people without the disorder be allowed to judge the quality of life of someone who has it?

“That is a message that the world doesn’t want us here,” says Ne’eman, “and it devalues our lives.”

The prospect of no more Ari Ne’emans – whether you agree with him or not – is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn’t it follow? And what would our world be like without autism?

… One of Ne’eman’s latest efforts is a new public-service announcement called “No Myths,” which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne’eman appears in a red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. “Our futures have not been stolen,” Ne’eman says. “Our lives are not tragedies.” The message is clear: We stand before you. Don’t make us go away.

Related posts here and here.

(Photo of Ari Ne’eman from ‘No Myths’ PSA)

From the Washington Post:

Michael J. Fox appears this week in an hour-long special exploring what makes a person an optimist.  The actor has remained mostly upbeat and positive since publicly disclosing his Parkinson’s diagnosis in 1998.

“I feel that whatever hardships or losses I’ve had as a result of the Parkinson’s are far outweighed by the gifts I have been given in life,” Fox said. “Everyone gets their own bag of hammers, and I think people are heartened by the fact that I feel grateful and optimistic.”

Fox’s latest book, “Always Looking Up: The Adventures of an Incurable Optimist,” was listed among the top 5 best-selling hardcover nonfiction books by the New York Times this week.

(Washington Post TV Week photo)

From the [UK] Daily Mail:

Both of Yvonne Finlayson’s IVF twins (at left) have birth defects that have required medical treatment and surgery.

Scientists say test-tube babies are up to 30 percent more likely to come with birth defects, and Finlayson and her husband, Mark, say they feel guilty that their desperation for children may have blinded them to the risks.

The Finlaysons say they love their children and wouldn’t change them, but they wish they had gotten better information in advance They also said they would not consider further fertility treatments.

… at a time when more than 12,000 babies are born every year as a result of fertility treatment, critics have seized upon these statistics as evidence of our over-reliance upon techniques which, even the experts admit, we still know relatively little about.

In the Topeka Capital-Journal, Rud and Ann Turnbull say their son Jay proved that adults with autism can have purposeful, worthwhile lives if support personnel are in place to help with transitioning from school, housing, employment, social connections and other needs.

The Turnbulls, who are co-founders of the Beach Center on Disability at the University of Kansas, reached out to friends and colleagues to develop a plan for Jay’s life after he was expelled from an adult services program for people with disabilities.

Jay subsequently spent 21 years working as a clerical aide, a job that provided him with structure and a social network, and lived in his own home with a couple who oversaw his schedule and support services. Jay Turnbull died earlier this year, most likely of a heart condition, at the age of 41.

While strides have been made in diagnosis, early intervention and education, [Ann] Turnbull said much more needs to be done so children with autism can lead productive, independent and happy lives as adults.

The article is part of a Topeka Capital-Journal series on autism.

From the Asbury Park [NJ] Press with video:

Parents of children with Down syndrome say the healthy, fulfilling lives of their children, like Conor Wright, 18, (shown left), are a far cry from the bleak picture often given by doctors delivering a Down syndrome diagnosis.

A new federal law is supposed to “better inform medical professionals and parents about the realities of the genetic condition” instead of focusing on outdated information and the worst possible outcomes, advocates say.

Better health care and inclusion mean that people with Down syndrome are living longer and more meaningful lives – attending regular schools, holding full-time jobs, playing an active role in their communities, and some even driving cars and attending college.

Conor’s mother, Joyce Wright, says “Life is good,” says Joyce Wright, Conor’s mother.”There are challenges, but the positives so outweigh the negatives.”

See also:

Family says Down diagnosis needn’t be seen as a burden – Asbury Park Press

Earlier posts here and here.

(Asbury Park Press photo)

From BBC, UK Times, People Magazine, Hindustan Times:

The story of an Indian girl whose cleft lip was repaired through surgery has won the Academy Award for best short documentary.

Directed by Megan Mylan, the film follows Pinki’s transformation from an introverted social outcast to an outgoing local celebrity after an operation funded by The Smile Train, an international charity organization that provides free surgery to children with cleft lips and palates.

Pinki, who attended the awards ceremony with her father and her surgeon, told People magazine that she had been shunned by children and townspeople in her rural village in India. Pinki’s birth had been a humiliation on her family, and villagers said her cleft lip was evidence of a curse.

Her father, Rajendra Sonkar, said he used to think it would have been better if his daughter had not been born. Now he hopes Pinki will grow up to be a flight attendant.

(Pinki with surgeon Subodh Kumar Singh, her father, and director Megan Mylan, AP photo from UK Times)