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October 16, 2007

BehindTheMedspeak: New autism website features video that 'can make you gasp'

If a picture is worth a thousand words, 24 frames/second of video translates to 24 x 60 x 1000 = 1,440,000 words per minute of startling viewing at autismspeaks.org.

Lindsey Tanner, in yesterday's Associated Press story appearing in the the Washington Post, wrote, "Dozens of video clips contrast the behavior of autistic kids with that of unaffected children. Some of the side-by-side differences can make you gasp."

Here's the article.

    Web Site Shows Autism Videos

    What's so unusual about a baby fascinated with spinning a cup, or a toddler flapping his hands, or a preschooler walking on her toes?

    Parents and even doctors sometimes miss these red flags for autism, but a new online video "glossary" makes them startlingly clear.

    A new Web site offers dozens of video clips of autistic kids contrasted with unaffected children's behavior. Some of the side-by-side differences can make you gasp. Others are more subtle.

    The free site, debuting Monday, also defines and depicts "stimming," "echolalia" and other confusing-sounding terms that describe autistic behavior. Stimming refers to repetitive, self-stimulating or soothing behavior including hand-flapping and rocking that autistic children sometimes do in reaction to light, sounds or excitement. Echolalia is echoing or repeating someone else's words or phrases, sometimes out of context.

    The new site is sponsored by two nonprofit advocacy groups: Autism Speaks and First Signs. They hope the site will promote early diagnosis and treatment, which can help young children with autism lead more normal lives.

    Pediatrician Dr. Michael Wasserman cautioned that the site might lead some parents to needlessly fret about normal behavior variations, and said they shouldn't use it to try to diagnose their own kids.

    "Just as there's a spectrum in autism... there's a spectrum in normal development," said Wasserman, with Ochsner Medical Center in New Orleans. "Children don't necessarily develop in a straight line."

    But Amy Wetherby, a Florida State University professor of communications disorders who helped create the site, noted that sometimes "parents are the first to be concerned and the doctors aren't necessarily worried. This will help give them terms to take to the doctor and say, 'I'm worried about it."

    And while the children shown in the "Red Flags" video clips on the site have been diagnosed with some form of autism, the sponsors note that not all children who behave this way have something wrong. In fact, the behaviors in some of the short video clips — when viewed individually — look fairly normal.

    The important thing is to seek medical help if a child does exhibit persistent unusual behavior, to either rule out autism or get an early diagnosis, said Alison Singer of Autism Speaks.

    Added Wetherby, "We now know that one out of 150 children has autism, or one out of 94 boys. It's not a rare disability. We also know that early intervention is critical."

    The site was to be available to the public starting Monday on the Autism Speaks Web site www.autismspeaks.org.

    Several autism specialists who reviewed it at the request of The Associated Press called it an unusually helpful tool for parents and doctors.

    "The moving pictures speak a million words," said Dr. Edwin Cook, an autism researcher and educator at the University of Illinois at Chicago.

    "Not only do I see this as useful for the general public and for parents who might be wondering ... but I will frankly be using it for education" and training, Cook said. He has received research funding from Autism Speaks but has no connection to the new site.

    Stefanie Voss of Tallahassee, Fla., said it will be a great tool "for parents who are in the situation that I was in three years ago, which is, 'I'm not sure if something's wrong with my child.'"

    She said she asked her pediatrician about her son Nicholas when he was 14 months old and was told he didn't show "the classic signs" of autism.

    "He did smile and have eye contact, but what I've learned since is those aren't the only red flags," Voss said.

    Nicholas didn't point, wave, or demonstrate any other nonverbal communication. He'd also spend hours opening and closing cabinet doors or spinning plastic bowls on the floor.

    She eventually took him to Florida State where he was diagnosed at age 17 months and intervention began. Nicholas is featured in a video clip on the site.

    With speech lessons, physical therapy and behavior training several hours daily, he's now affectionate, social, talking, walking and in preschool.

    "It shows you that all your hard work and early intervention pays off," Voss said.

    Dr. Karen Ballaban-Gil, a pediatric neurology specialist at Montefiore Medical Center in New York, said the site "will be doing a real service."

    The site will eventually feature a section on autism treatments and Ballaban-Gill said the only scientifically sound ones are intensive behavior training. Others, including special diets, are unproven and should not be included, she said.

    Singer said there is no decision yet on which treatments will be added to the site.

....................

The final 35 seconds or so of the following video

are especially compelling.

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Comments

Found this blog off of MSNBC.com earlier this week. Needed to laugh today so went and found it again: http://fakesteve.blogspot.com/2007/10/microsoft-trying-to-patent-iphone.html

I am especially referencing the 6:02 pm post of 15 October. Humorist (or humourist, depending) observation of rivalry at its best :)

Posted by: NotCreativeEnough | Oct 19, 2007 7:45:35 PM

Dear Joe,

Autism Speaks produced a previous video, "Autism Every Day" which was roundly criticized by some members of the autism community.

From Estee Klaar

"Now, let me conclude that I wonder if Jenny would still have children if she saw this video: Neurotypicalism Every Day by Christschool. Of course, it is a response to Autism Every Day, the unfortunate and poorly thought-out Autism Speaks' video. It just goes to show that if you put a certain kind of lens on something, you can yield a certain kind of result. Typical children look "horrible" to me here. They have melt-downs and geez -- parents get divorced over them. If I saw this video, I would NEVER want to have a neurotypical child:"

LInk to the "Neurotypicalism Everyday" video

http://uk.youtube.com/watch?v=Bxx5EmCRxYY">http://uk.youtube.com/watch?v=Bxx5EmCRxYY">http://uk.youtube.com/watch?v=Bxx5EmCRxYY

Another two resources your readers should have:

Autism Vox, who has a child with autism (or as she says, "an autism mom")

http://www.autismvox.com/

Her take on the Autism Speaks video glossary:

One thing I would emphasize is that, from all the parents I have known over these past nine years since we had “some concerns” about Charlie, no one has regretted getting an evaluation and starting early intervention. Over and beyond any shame that a parent might feel about potentially “labeling” a young child and saying that there is “something wrong,” there is relief from starting a conversation about what the child can do, cannot do, and is not doing; about phone numbers to call, a book or website to look at, and even about what autism is, and what it is not.

I was going to say that it might be helpful to create a video glossary of older autistic children and autistic adults, of autistic persons after the “red flags” have been noted, the diagnosis made, queries about treatments begun. But then it occurred to me that such a video glossary already exists, at the Posautive You Tube group. Go there and you’ll see not so many red flags, as some persons biking, swimming; as something beautiful

Posautive you tube group:

http://www.youtube.com/group/posautive

Posted by: Liz D. | Oct 17, 2007 10:05:52 PM

Very compelling. Thanks.

Posted by: stcasserole | Oct 17, 2007 9:58:22 AM

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