lunes, 15 de octubre de 2007

autism speaks

New "Autism Video Glossary" Launched; What's Your Opinion?
A collaboration between Autism Speaks, First Signs and two other organizations has resulted in an online "video glossary" focused on topics related to autism spectrum disorders. The glossary sits on the Autism Speaks website, and includes items related to red flags, developmental milestones, screening and diagnosis, and parent reflections.
When concerns were first raised regarding my son's development, I found them hard to believe. It wasn't until I saw his behaviors in comparison to those of typical three year olds that the suggestion of autism really made sense to me. So I was interested in seeing how the use of video might be helpful to parent (and others) concerned about autism in very young children.

A took a look at several of the video clips. The first, an overview, is really a public service piece starring Leslie Stahl. The glossary itself is not in fact a glossary (which would define terms). Instead, it's a set of video clips combined with explanatory text which describes how the child in the video presents typical or atypical features in the areas of social interaction, communication, and so forth.

At first, I was intrigued. Indeed, the videos did seem to show how a typical 15 month old's behaviors might differ from those of an autistic child at the same age. The child with autism didn't reference the adults; didn't make eye contact; didn't smile; didn't attempt to use language. But then I watched the next clip, which showed a slightly older autistic toddler. This time, the child DID reference the adults; DID make eye contact; DID attempt to use language. But the language was clearly delayed relative to the child's age (nearly two years old).

Soon, I found myself flipping back and forth between clips, trying to figure out what it was that REALLY distinguished the children with autism from those without. I found it tough. Was it lack of eye contact? Lack of speech? Preference for things over people? In almost all cases, children with autism seemed to have some typical traits and abilities - and in some cases the typical children did NOT make eye contact, etc. In my "skeptic" mode, I found myself wondering how many of the "autistic" children shown might actually have been merely shy, developmentally delayed, speech delayed, or just plain bored!

In short, I think the idea of video as a tool for showing parents what autism looks like sounds great. In practice, though, the tool is surprisingly hard to craft. Perhaps that's because autism is such a very complex and idiosyncratic disorder - or perhaps it's because thirty second clips aren't sufficient to clearly delineate where problems lie.

My concern with these video clips, as with many of Autism Speaks' products, is that they attempt to put autism into bite-sized chunks for a general lay audience. But autism just doesn't fit into handy nugget size. In fact, I worry that parents will either over or under-react to such short, general bits of information. In some cases, parents will note that their child DOES point, smile, and reference adults, and thus can't possibly be autistic. In other cases, parents will worry unnecessarily because their child really isn't talking yet - at the ripe old age of 22 months.

Take a look at these videos yourself, and let us know what you think!

Autism Every Day is a film produced by Lauren Thierry of October Group and Eric Solomon of Milestone Video. A 13-minute version of the film was screened at A New Decade for Autism, a fundraising event held May 9, 2006 in New York City. The film was later expanded to a 44-minute version which premiered on Jan. 21 at a special screening at the 2007 Sundance Film Festival. Click here for coverage of the premiere. Click the links below to view the theatrical trailer.

Theatrical Trailer
Minutes: 1:37
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Click the links below to view the original 13-minute version of the film (requires Windows Media Player). Click here to read viewer reactions to the film. Click here for an article about the film from The New York Observer.

Autism Every Day
Minutes: 13:20
Low | Medium | High
Copyright ? Autism Speaks/NYCA, 2006. All rights reserved.

Autism Speaks Senior Vice President Alison Singer and film producer Lauren Thierry appeared on ABC's "Good Morning America" on Tuesday, August 8, 2006 to discuss "Autism Every Day." Click here to view the segment from "Good Morning America." Click here to read a story from ABC News.

Click here to visit the web site of the video production firm behind the creation of "Autism Every Day."
We are dedicated to funding biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. For information on Autism Speaks' on-going grant program click here.

Availability of Autism Speaks Funding for Autism Research Awards and Fellowships

All proposals must be submitted online via this site. Through its various user-friendly features, applicants and corresponding host institutions can also monitor the status of their applications and interact with Autism Speaks's grant administration staff. For more details and instructions, please see the links below, as well as the Autism Speaks Research and Fellowship Awards FAQ and Autism Speaks Online Grant Administration System Help.

A new Web site offers insight for parents who may be concerned about their child's behavior.

The site, AutismSpeaks.org, offers dozens of video clips of autistic kids contrasted with behavior of those who are unaffected.

It is sponsored by two nonprofit advocacy groups: Autism Speaks and First Signs. They hope it will promote early diagnosis and treatment.

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