AWARENESS UPDATE

There are several items in the news today that either highlight growing awareness of persons with physical and other differences...or that highlight the lack of same. 

First:  there is evidence that, sadly, doctors sometimes too-easily dismiss parents' autism concerns (autism is sometimes associated with Moebius Syndrome):

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Pediatricians often fail to take seriously parent concerns about autism, new research suggests, sometimes delaying children from receiving a diagnosis and treatment for years.

In a study looking at the experiences of children diagnosed with autism as compared to those with intellectual disability and developmental delay, researchers found that doctors were 14 percent less likely to take a proactive approach when families cited concerns about autism.

Rather than refer children to specialists or for developmental testing, the study found that pediatricians often reassured parents worried that their child might be on the spectrum or indicated that their child “would grow out of it.”

“This study implies that the behavior of health care providers is likely a very important factor in delayed autism identification,” said Katharine Zuckerman of Oregon Health & Science University who led the study published online this week in The Journal of Pediatrics.

For the study, Zuckerman and her colleagues looked at data from a nationally-representative survey of parents of 1,420 children with autism and 2,098 kids with intellectual disability or developmental delay.

Parents of those later diagnosed with autism said they expressed concerns to their health care provider about their child’s development around age 2, a whole year earlier than moms and dads of kids with other delays. Nonetheless, among families surveyed, children with autism were not diagnosed until age 5, on average, even though kids with the developmental disorder can generally by identified by age 3.

Significantly, the study found that children whose doctors were passive about initial autism concerns waited as much as two years longer to be diagnosed as compared to those whose health care providers were immediately proactive.

“We know that early identification of ASD is beneficial to children and their families. Unfortunately, many families experience long delays between when they first have concerns and when their child gets diagnosed with ASD,” Zuckerman said.

The findings, researchers said, indicate that doctors may need more education and training to better respond to parent concerns related to autism in particular.

Currently, the American Academy of Pediatrics recommends that doctors conduct developmental screening at 9, 18 and 30 months with all children as well as autism-specific screening at 18 and 24 months.

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But there are also positive notes.  For example, ESPN and ABC will this summer air the Special Olympics:

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For eight days this summer, some of the world’s top athletes with intellectual disabilities will be featured on national television.

ESPN said this week it will air coverage of the Special Olympics World Games in Los Angeles across its networks.

The event’s opening ceremony will be broadcast live on ESPN co-hosted by Robin Roberts from ABC’s “Good Morning America” and ESPN’s Lindsey Czarniak and Kevin Negandhi.

Subsequently, ESPN, ABC or ESPN2 will air daily coverage of the weeklong event including features and key results from the competition. A “best of” special recapping the World Games will also be broadcast over two days a week later.

“The Special Olympics World Games is a truly compelling event, filled with some of the most extraordinary sports stories and people you will ever see, and we are looking forward to showcasing them,” said Russell Wolff, executive vice president of ESPN International. “Sports has the power to be unifying, uplifting and life-changing, and this event will be a remarkable and tangible example of that power.”

Previously, ESPN provided more limited online coverage of the 2011 Special Olympics World Games in Athens, Greece.

The Los Angeles games are expected to bring together some 7,000 athletes and 3,000 coaches from 177 countries in addition to 500,000 spectators for the event July 25 to August 2.

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And finally:  did you know that Masters' winner Jordan Spieth has a sister with special needs?  The newest winner of the Green Jacket was only too happy to talk about her:

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Basking in the glow after becoming the second-youngest player ever to win one of golf’s top prizes, Jordan Spieth was all too happy to talk about his sister with special needs.

Over the weekend, Spieth soared over golf’s better-known names to win the Masters with a score of 18 under par. The feat quickly put the 21-year-old in the same sentence with the sport’s longtime star, Tiger Woods, who also won the tournament at that age.

After sealing his victory at the famed Augusta National Golf Club in Augusta, Ga., Spieth looked forward to telling his sister Ellie, 14, who is on the autism spectrum, about his win. The younger Spieth didn’t make it to Augusta for the Masters, but did get to see her brother play at the Houston Open earlier in the month.

“She’s just going to be happy that I won,” Spieth said. “She was out there in Houston and after each round, she said, ‘Jordan did you win, did you win?’ I said ‘not yet, not yet’ and then ‘no.’ So I can tell her I won now.”

The comments came in between questions about everything from his performance at the Masters to the future of golf.

It’s not the first time, however, that Spieth has opened up about his relationship with his sister.

“Being Ellie’s brother humbles me every day of my life,” the golfer says on his website.

And Spieth’s mom, Chris Spieth, credits her daughter’s challenges with keeping the golf champion grounded.

“Jordan wouldn’t be where he’s at today if he didn’t grow up with Ellie,” his mom, Chris Spieth, told ESPN. “Jordan realizes this isn’t real life at the Masters. Trying to sit around and have dinner when his sister doesn’t want to eat when everybody else is eating and has a fit, that’s real life.”


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