“It’s an odd life, but a good one”

Parents of the Autistic Weigh Lifelong Care Options on this morning’s Morning Edition on NPR discusses many of the things that I’ve discussed here before: the need for estate planning and trusts, thoughts on how your adult child will live, potential interactions with law enforcement.

What struck me the most about the story, though, was how autism was portrayed and – more importantly – how the parents in the story have responded to life with autism. The quote I used for the title of this post – “It’s an odd life, but a good one” – pretty much sums it up.

Finally, a story about autism in the national media that doesn’t focus on the doom-and-gloom, woe-is-me (I?), “my child is gone” view of autism that is so prevalent in the media today. Could this be the start of a new trend?

Let’s hope so.

Event Notice: Autism 101 in St. Louis

Autism 101, a panel discussion about autism, will be at 7 p.m. April 18 at the Logos School, 9137 Old Bonhomme Road, Olivette. [Flyer (MS Word)]

The panel will explore topics such as relationship development intervention, applied behavioral analysis, neurology and sensory and feeding issues associated with autism.

Among speakers will be Dr. Garrett Burris of Child Neurology Associates, Colin Peeler of Behavior Solutions, Sheree Behrndt of Sensory Solutions and Sue Lindhorst of Speech Language Services.

Autism Speaks and Missouri Families for Effective Autism Treatment will sponsor the event.

Those who want to attend must register by Wednesday. To register, click on Upcoming Events on the website, www.autismwalk.org/stlouis. For more information, call 314-989-1003.

Autism awareness “elevator pitch”

In her recent post Autism Speaks Now, Kristina Chew contemplates the discrepancies between the types of autism research actually being conducted and the types of autism research that are covered in the media (my emphasis):

[A] study by Stanford University researchers published in the February Nature Reviews Neuroscience notes, brain and behavior research on autism accounts for 41 percent of research funding and published scientific papers and only 11 percent of newspaper stories in the United States, United Kingdom and Canada. In contrast, 13 percent of published research was on environmental causes of autism but 48 percent of the media coverage was on this topic: When it comes to reporting on autism, there is a serious gap between scientific research and the mass media; in the case of some reporting on thimerasol and autism, parents are pitted against scientists. Autism Speaks, with its access to the full power of the media, will be getting its message out.

Kristina goes on to ask how scientists (and, by extension, we) can overcome this issue (emphasis is again mine).

I would be curious as to how scientists might “frame” some “hot button” issues in autism: As the back-and-forth in the comments on a post about David Kirby and Autism Speaks, facts and research studies can be cited, but people’s beliefs are not so easily swayed. What are vaccines and chelation but “highly politicized topics” in autism circles? How might a scientist refute such theories and treatments by “strategically avoid[ing] emphasizing the technical details of science”; by translating technical knowledge with an eye to the fact that this alone does not “drive decision-making or change minds”? It needs to be recognized that, when it comes to understanding autism, parents do not rely on facts and evidence and science alone; that emotions—however much acknowledged, or not—play a huge role.

We have to remember, too, that last sentence applies not only to parents but to the media who would reach those parents. And also to the people who are trying to get these parents to give money to pursue a cause.

To reach these people, you need to be able to get your message across quickly, to the point, and convincingly. While it may be possible to get the point across convincingly using the scientific data as a basis, this will not likely be either quick or to the point.

What we need is an “autism awareness elevator pitch.” Imagine you find yourself on the elevator with Oprah’s producer (to follow the thread started by Kristina), and you have until you get to the top floor to explain why Oprah should dedicate an hour to your view of autism. Here’s the quick sound byte that probably helped get Autism Speaks onto Oprah:

This is the national health crisis of our time……..This is bigger than AIDS. This is bigger than breast cancer, and almost no attention seems to be paid to it.

There a lot of ways to approach this (scientist, parent, autistic), I want to hear them all.

So…, what’s your pitch?

Gaming and Students with Asperger’s Syndrome: A Literature Review

You may have noticed that I use SiteMeter on this site (look in the bottom of the right column if you’ve missed it). It is interesting to see how many people visit the site (not that many), and where they come from (all over the world), but what fascinates me the most is the referrer log. I get the odd link from someone else’s blog or other site, but the vast majority of referrals to this blog come from search engine queries.

It is interesting to see what search terms people use that find this site. Even more interesting are the other sites that those search terms turn up. For instance, a link to Gaming and Students with Asperger’s Syndrome: A Literature Review from a search for “video games and autism and gee.”

As a teacher in the field of middle years education, I have observed a continual rising interest in video and online gaming by many of my students, regardless of gender and academic ability. In the past few years, I encountered students playing an online game set in a virtual environment (VE) called Runescape. My interest was especially piqued when I noticed students with special needs, especially those with Asperger’s Syndrome(AS) playing the game and exhibiting positive social and cognitive skills that he would rarely demonstrate in a traditional classroom environment. Students with AS were discussing the game with other classmates (and myself) in and outside the classroom. They were asking how to spell words and utilize a calculator in order to achieve objectives within the game. They were problem solving and surfing the web for online discussion groups associated with the game.

In this literature review, I will seek to answer the following questions: What educational learning principles and concepts are associated with online gaming? How do these aspects of gaming benefit students with AS? In turn, I will present a review of the latest research on the issues related to education and gaming, present an overall framework of the game Runescape, discuss some of the defining characteristics of AS, then explore how certain aspects of gaming benefit students with AS.

A nice pulling together of several of my areas of interest.  The Lit Review itself is well worth a read, and the bibliography provides even more.
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Tramp and Tumbling on the world stage

Last night, NPR aired a rare piece on World Cup and Olympic Trampoline competition.

American trampoline artists say their sport sometimes gets tagged as the kind of spectacle that belongs in circuses, not the Olympics. But the sport combines gymnastics and dance — all while mocking gravity at 30 feet in the air.

Short, but worth a listen.

This story was inspired in part by the Trampoline and Tumbling World Cup going on this week in Lake Placid, NY. A press release from USAG yesterday gives the results, including these highlights:

2006 U.S. tumbling champion Kalon Ludvigson of Cedar Lake, Ind., and 2007 Winter Classic tumbling champion Susannah Johnson of Roanoke, Va., both won their first World Cup medals when they claimed bronze medals in men’s and women’s tumbling, respectively….

Canadian trampolinists set two world records for degree of difficulty at the World Cup. Canada’s Jason Burnett set the mark in men’s trampoline at 17.5, while Rosannagh MacLennan and Karen Cockburn of Canada set a world record at 14.2 in their women’s synchronized trampoline win.

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Champions, present and past

If you would like to see a bit of current World Series Champion history, the World Championship Trophy will be on display at the Missouri Historical Society (Missouri History Museum) in Forest Park here in St. Louis beginning this Saturday. Society members will get a chance to see it Saturday morning before it is open to the general public , so now may be a good time to become a member. The 30 pound, sterling silver trophy will be on view in the museum’s MacDermott Grand Hall 7 April – 13 May 2007 (except for 23-25 April, when the trophy will not be on display).

A bit of interesting trivia, thanks to the folks at wikipedia: The trophy, officially called the Commissioner’s Trophy, was first presented in 1967 to the St. Louis Cardinals (!) following their victory over the Boston Red Sox.

Speaking of baseball, yesterday was a beautiful day for it, and a great day for opening day ceremonies for the reigning World Series Champion Cardinals. In addition to the current champions and new additions to Busch stadium to honor them, the festivities included quite a few champions from the Cardinal’s past.

After the Budweiser Clydesdales got the party started, parading around the field, Cardinals radio voice John Rooney and actor Billy Bob Thornton took over as the official emcees of the evening festivities.

Shortly after each member of the team took a trip around the field in a convertible, past Cardinals greats were introduced, commemorating St. Louis’ last two World Series championships, in 1967 and ’82.

Some of the former players on hand were Keith Hernandez, Joaquin Andujar, Bob Forsch and Bruce Sutter from the ’82 championship squad. Representing the ’67 championship team were Tim McCarver, Red Schoendienst, Lou Brock and Bob Gibson, among others.

OpeningDay07The pregame festivities continued when Adam Wainwright, Gibson and Sutter threw out the ceremonial first pitches. Those were the three pitchers to record the final out for the Cardinals’ last three World Series titles. The three hurlers threw to the managers that led them to the World Series: Tony La Russa, Schoendienst and Whitey Herzog.

Sutter joked before the toss that he didn’t know if he could get it to Herzog, and if he did, he didn’t know if Herzog could catch it. Sutter had no problem delivering a strike to his former manager.

All in all, it was quite a day for Cardinals fans, who waited 24 years in between for their World Series titles. Some fans were so eager for the first game that they went to downtown St. Louis several days early.

Pretty much a perfect opening day. Except, of course, that the Cardinals lost to the Mets.

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