From the BBC, [UK] Telegraph, [UK] Times:

Athletes with intellectual disabilities will be permitted to participate in the London 2012 Paralympic Games, following a vote by the International Paralympic Committee.

They had been banned since the year 2000, when journalist Carlos Ribagorda infiltrated Spain’s gold medal winning basketball team and learned that only two members of the victorious 12-man squad had intellectual disabilities. Ribagorda exposed poor methods for evaluating athletes, and reported that some of Spain’s players were engineers and university graduates.

IPC president Sir Philip Craven hailed Saturday’s decision as “the outcome of a unique and excellent cooperation between sports governance and the scientific community.”

Pamela Wilson, who writes for the “Special Needs Children” site at Bellaonline.com, sends in this reaction to the recent report that 27 percent of parents of children with Down syndrome surveyed would not seek to “cure” their children. She is the mother of a young adult with Down syndrome.

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First of all, we don’t really know what choices we would make if a safe, effective “cure” for the range of intellectual disability found in most individuals with Down syndrome was developed.

The thought of giving pharmaceuticals of any kind to newborns or young babies is distressing to most parents, especially since so many are known to have serious side effects in teens and adults.

I don’t think we can compare the rejection of cochlear implants by some in the Deaf community to experimental pharmaceutical treatments to reverse or avoid learning challenges in babies and children with Down syndrome. One is a cultural issue over a “condition” shared by a parent and their son or daughter.

Most parents of individuals with Down syndrome do not share a culture of disability with their sons and daughters.

That being said, we do want the best opportunities and support for them as they are growing up and throughout their life spans. So far, the “side effects” of educational opportunity, inclusive education and supported living, being welcome and accepted in the mainstream of our communities, are all positives for everyone involved.

People with Down syndrome have the right to express their diversity just like everyone else. Who’s to say what will happen if research does develop a medication or treatment that “cures” the learning challenges of Down syndrome? (more…)

So-called ‘therapies’ amount to uncontrolled experimentation on children, experts say

Thousands of American children with autism are being subjected to “therapies” that are costly, unproven and may cause harm, an investigation by the Chicago Tribune has concluded.

Physicians are trading on hope to promote vitamins, intraveneous injections and even pressurized oxygen chambers to parents, saying they can “recover” children with autism. Yet science has not yet identified a cause or cure for the disorder.

The Tribune investigation found that laboratory tests used to justify the “therapies” are often misleading and misinterpreted, and said clinical trials have not found them to be effective.

Experts urged parents to exercise caution and demand to see documentation of beneficial results before agreeing to participate. An excerpt:

“They really should be seeing treatment of patients with unproven therapies as dangerous experimentation,” said pediatrician Dr. Steven Goodman, a clinical trial expert at the Johns Hopkins Berman Institute of Bioethics. “The problem with uncontrolled experiments … is that it is experimentation from which we can learn nothing.”

Related stories from the Chicago Tribune:

• Autism success stories more persuasive to some than hard data
• Questionable treatments for children with autism
• Experimental treatments

Writing in the Los Angeles Times Booster Shots Blog, Melissa Healy says she was “interested” to learn about a Senate proposal to remove the words “mental retardation” and “mentally retarded” from federal laws. The measure has the strong backing of The Arc of the United States. An excerpt:

” ‘Retard,’ ‘retarded’ and ‘retardation,’ once accepted medical terms, are now used only to insult and demean people,” said Peter V. Berns, chief executive of the Arc, in a statement supporting [Sen. Barbara] Mikulski’s proposal. He added, “Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil rights.”

… So, is it political correctness run amok, or is it a group’s right of self-determination to stipulate (by law, no less) how they should be referred to? There are plenty of precedents to point to. But some will resist being dictated to when it comes to language.

From the San Francisco Chronicle (with video), New York Times, BBC:

Google has announced a plan to use speech recognition technology to automatically bring text captions to millions of YouTube videos, making them accessible to people with hearing impairments and making them more searchable.

Analysts expect the change to open the videos to a wider foreign market and potentially make them more profitable.

Engineer Ken Harrenstein, who helped develop the translation  system, said it was imperfect but “will continue to improve with time.” Harrenstein, who is deaf, said in a Google blog that the majority of user-generated content on Youtube has been inaccessible to “people like me.’

‘Before the birth of son Trig, Palin says she knew the abortion option was there’

From ABC News (with video):

In an interview to be aired on “20/20,” former Alaska governor Sarah Palin tells Barbara Walters about her decision to continue her pregnancy after tests revealed that her baby would have Down syndrome. The interview includes footage of Palin’s son Trig, as well as other members of the family talking about the impact of Trig on their lives.

An excerpt:

Ninety-two percent of women who get that news terminate the pregnancy, according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children’s Hospital Boston.

Palin said she knew abortion was an option but was able to overcome the fear of the unknown to go ahead with the birth.

“I knew that the option was there. … I thought again, for that split second, ‘OK, now I know, too, why, when that fear strikes you, because of the unknown,’” she said. “I understood then, too, why a woman would consider [abortion] an easier path to perhaps, if you will, do away with the problem, instead of understanding that every child has purpose. There is destiny for every child. And it can be good, in our world. And that’s what I held onto.”

When asked by Walters if her “right to life” stance on abortion dictated her choice, Palin said her decision was not “politically motivated.”

“My decision certainly wasn’t a political decision. It was a holding onto a seed of …that promise that things will be okay if we choose life. And that certainly has come to fruition in my life,” she said.

Two of Palin’s children said they did not know about Trig’s Down syndrome diagnosis until after he was born. Todd Palin said he expects Trig to keep up with the family’s outdoorsy lifestyle and do all the things the couple’s other children have done. Kids with Down syndrome, he said, “are just beautiful gifts from God for all of us to learn from … and to make us stronger as we live. He is just another kid in our house. … But he has, but he has just been a blast.”

(Photo from AP/National Review)

From MIT Technology Review, [UK] Times, [UK] Telegraph, [UK] Daily Mail,  Reuters/ABC News, Stanford University:

New Stanford University research published in the journal Science Translational Medicine reports that scientists have been able to use several existing drugs to improve the cognitive functioning of mice that were genetically engineered to exhibit symptoms similar to Down syndrome.

Experts said the research offers hope for the future, but cautioned that it will take at least a decade before a drug might be available to treat people.

Researchers using mouse models found that the drug increased levels of the neurotransmitter norepinephrine. They said increasing the message-carrying chemical could help prevent some of the memory deficits in Down syndrome that hinder learning and interfere with brain development.

Ahmad Salehi, the lead author on the paper, warned parents against trying the study drugs on their children. “Just because a drug works in mice doesn’t guarantee the same effects in humans,” he said.

Related post: Parents divided on hypothetical cure for Down syndrome

(Photo from the [UK] Times)