Re: Celebrities Support Cure Autism Now at Facing Autism Event - ...

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USA Today.com

04/10/2002 - Updated 10:47 AM ET

(To see photos and read accompanying articles on Rene Russo and Joe Montegna

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http://www.usatoday.com/news/healthscience/hsphoto.htm

Stars 'CAN-do' about defeating autism

By Mike Falcon, Spotlight Health,

With medical adviser A. Shoop, M.D.

By Gibbons

Gil Bellows, left, NiCole and Eads unite to raise autism

awareness.

Many actors struggle for years in obscurity searching for that breakthrough

role that gives voice to their talent. For children and adults diagnosed

with autism that struggle with isolation is lifelong.

The goal of the recent Facing Autism fundraiser in Silicon Valley is to

defeat that isolation by raising awareness and research funding for this

profound developmental disorder.

" At the heart of it a number of people from different industries get

together and raise money for Cure Autism Now (CAN) and celebrate a united

front, " says Gil Bellows, who now stars in The Agency. " I think everybody

who is involved is in some way touched by autism —- either directly or

through friends whose children are autistic. "

Attending the fourth annual event were Silicon Valley executives and

Hollywood notables, including: Rene Russo, , CSI's

Eads, ER stars Moira Tierney and Innes, as well as The West Wing's

Brad Whitford and NiCole .

" Being a seventh grade school teacher before acting, I came in contact with

a couple of these kids, " says Eads. " It's really obvious they need special

care and attention. They're beautiful children that need care and love, and

that's what this is about. "

" I have a good friend whose brother is autistic, " says . " When I

went to this event last year and saw what they were doing I said, 'just tell

me what to do.' Awareness is key, so people understand what autism is and

how many are really affected by it. And of course, money helps. "

In fact, although autism research is under funded it is not for lack of

subjects. According to CAN, the neurological disease occurs in one in 500

births. That makes autism the third most common developmental disease

trailing only mental retardation and cerebral palsy.

Vocal lessons

But the very nature of autism has denied the disease a voice, and in funding

research speaking up loudly and often is key.

" No beloved celebrity will ever develop this, " notes Whitford, " and

unfortunately that's the way a lot of things get funding. Every election

cycle we hear how everyone is for kids, but kids have no hard money, no soft

money, and they don't vote. My dream is to give a voice for kids who can't

say it for themselves. "

The person with autism is usually the least able to express what the

disorder is. They may never or rarely speak, can be withdrawn or distant,

and lack social skills.

" It's as if they do not understand or are missing a core aspect of what it

is to be human; to be and do like others and absorb their values, " says

psychologist Bryna Siegel, director of the Autism Clinic, University of

California, San Francisco. " Their worlds are more barren, their social world

is very distorted, and they come out of their world not when you want them

to, but when they want to. "

As a result people with autism are usually misunderstood. The best-known

public example of autism remains Rain Man.

" Initially I only knew of people who were labeled as being severely on one

end of this spectrum, " says Bellows, whose manager has a child with the

disorder.. " Being completely unable to communicate seemed the biggest curse

in life —- not being able to communicate in any way that would coincide with

the feelings inside yourself. "

" But thanks to committed resources, scientists, and families, inroads are

being made, " adds Bellows. " It's unfortunate that these inroads allow us to

see how complicated the human body is, because if it were simple we might be

a little closer to a cure. "

Simple explanations about the origins and reasons for autism have been

popular, but often inaccurate.

" 25 years ago if your child was diagnosed with autism it was supposed to be

some psychological problem coming from the parent, " explains Whitford.

" Turns out there is a genetic element to this disease. "

But in the 1950s psychiatrists like Bruno Bettelheim believed autism was a

rare emotional disorder caused by trauma or bad parenting. This mistake not

only created a culture of mistrust between families and scientists, but

delayed essential research.

Siegel challenged that theory when she was one of Bettelheim's grad

students —- only to see it replaced in popular culture with other simple

explanations: Measles vaccine, mercury in tooth fillings, and unknown

environmental factors.

But the research funded in part by CAN has led to more scientific

investigation and findings.

" It's clearly genetic in origin, " says Siegel, who authored The World of the

Autistic Child.

" That's difficult for many people to accept, " explains ph Buxbaum,

associate professor at the Mt. Sinai School of Medicine. Buxbaum's

exhaustive CAN-sponsored research helped firmly establish that genetics play

a role in susceptibility. " They may think it reflects on them in some way,

which is kind of sad. "

Autism is not the simple one-gene/one-disease cause-and-effect seen in many

other genetic conditions. It's likely that as many as 20 or so genes may

play a part in autism.

For the type of massive computer comparisons and analysis necessary to sort

out 20 or so suspected genes in autism, and their possible interplays,

significantly more time and money are needed. CAN is helping accelerate this

timeline by prompting shared research.

And computers and computer " geeks " may hold the key is solving the autism

puzzle.

Silicon Valley autism

Genetic arguments have particular cache in Silicon Valley, bolstered by

recent marked increases in the birth of children with autism and a milder

related form called Asperger's syndrome. Investigative reporter Steve

Silberman broke this disturbing trend in Wired Magazine late last year.

And that makes the Facing Autism event potentially more powerful than ever.

High-functioning people with mild autistic traits find the mechanical

precision of computer programming a welcome one because they often thrive on

tasks that demand order and continued close attention.

They may read, create, and decipher complex computer language more easily

than unravel the subtle social cues and facial expressions most of us

learned to read in early childhood.

Concentrate these " computer geeks " who may have a few of the 20 or so autism

genes in a tight geographical area and they'll be far more likely to meet

others just like them and raise children —- explaining the area's rise in

Asperger's disease. At least in theory.

In short, the very people who rule Silicon Valley may have a dedicated

workforce that involves autistic abilities and disabilities, the interest to

back research, and the collective computing and programming power to

accelerate genetic research to new levels.