02-23-2005, 02:08 AM
http://www.autism.msnbc.com./id/7012176/
Parents push
for autism cure
Doctors credit
parents for making
research a priority
By Robert Bazell
Correspondent
NBC News
Updated: 7:57 p.m. ET Feb. 22, 2005
LOS ANGELES - Portia Iverson and Jon Shestack learned their first child, Dov, had severe autism in 1995, when he was almost three years old.
advertisement
"I just remember sitting by his crib and just crying and crying," says Portia. "He was slipping away, every minute."
Like all parents, they wanted to know what to do.
"So, we said, 'OK. What's there in medicine?' There wasn't anything in medicine," recalls Jon. "And then we said, 'Well, they must be doing research.' But there was no ‘They.' There just wasn't."
Autism had long been neglected. So Portia, an accomplished set designer, and Jon, a successful movie producer, formed a parents' organization called Cure Autism Now.
Fact file Autism signs and symptoms
Children with autism and other autism spectrum disorders typically display a range of identifiable symptoms. By being aware of these signs, parents can help spot the disorder at an earlier age, which greatly improves a child’s overall prognosis. Click on a category to learn more about the symptoms to watch for.
• Communication
• Social interaction
• Behaviors
-- Delay in, or total lack of, development of spoken language
-- Difficulty initiating conversation
-- Echolalia (repeating words or phrases instead of using normal language)
-- Doesn’t respond to name
-- Doesn’t use or respond to gestures and other nonverbal cues
-- Doesn’t point to objects or show them to others
-- Doesn’t make eye contact at appropriate times
-- Doesn’t look at other people’s faces as much
-- Doesn’t respond to facial expressions or body language
-- Doesn’t smile back at others
-- Lack of peer relationships appropriate to age level
-- Less interest in other children
-- Not motivated by praise or physical affection
-- Doesn’t clearly demonstrate sympathy or empathy
-- Engages in highly repetitive play
-- Obsessively preoccupied with a specific interest or object
-- Lack of make-believe or imitative play
-- Dependent on routines, rituals and familiarity
-- Repetitive body movements (hand or finger flapping, eye rolling, twisting, spinning, rocking, etc.)
-- Preoccupation with parts of objects
-- Easily overstimulated by noises, crowds or lights
-- Extreme dislike of certain sounds, textures or situations
-- Doesn’t have strong response to pain
Sources: Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition); “Helping Children with Autism Learn,” by Dr. Bryna Siegal (Oxford University Press, 2003); Centers for Disease Control and Prevention • Print this
When NBC News first visited them in 1999, they were lobbying Congress for money and attention. But more important, Jon and Portia were learning the scientific details so parents could push the research.
Today the organization can share credit for a new blood bank where researchers look for genes that might cause autism. Scientists say the group has brought increasing focus to autism in many labs.
"It has directly changed the scene of autism research in the United States," says Dr. Michael Merzenich at the University California, San Francisco.
"I've never seen more effective parent involvement in any disorder," agrees Dr. Daniel Geschwind, a genetics researcher at the University of California, Los Angeles.
How does it feel for Jon and Portia to know they can move science and politics like that?
"People told us in the beginning you can't hurry science," laughs Portia. "Well, you can. You really can. You can treat it like a low-budget movie and make it go fast. And that's what we've done."
But of course it is never fast enough. Dov, now 13, remains profoundly affected. And while autism is getting more attention, it still receives far less money than any disorder that affects as many people.
So is Cure Autism Now an ambitious name for their organization?
"It will always be [a] real good idea until it is done," says Jon. "And then when it's done, we'll be happy to retire the name."
Parents push
for autism cure
Doctors credit
parents for making
research a priority
By Robert Bazell
Correspondent
NBC News
Updated: 7:57 p.m. ET Feb. 22, 2005
LOS ANGELES - Portia Iverson and Jon Shestack learned their first child, Dov, had severe autism in 1995, when he was almost three years old.
advertisement
"I just remember sitting by his crib and just crying and crying," says Portia. "He was slipping away, every minute."
Like all parents, they wanted to know what to do.
"So, we said, 'OK. What's there in medicine?' There wasn't anything in medicine," recalls Jon. "And then we said, 'Well, they must be doing research.' But there was no ‘They.' There just wasn't."
Autism had long been neglected. So Portia, an accomplished set designer, and Jon, a successful movie producer, formed a parents' organization called Cure Autism Now.
Fact file Autism signs and symptoms
Children with autism and other autism spectrum disorders typically display a range of identifiable symptoms. By being aware of these signs, parents can help spot the disorder at an earlier age, which greatly improves a child’s overall prognosis. Click on a category to learn more about the symptoms to watch for.
• Communication
• Social interaction
• Behaviors
-- Delay in, or total lack of, development of spoken language
-- Difficulty initiating conversation
-- Echolalia (repeating words or phrases instead of using normal language)
-- Doesn’t respond to name
-- Doesn’t use or respond to gestures and other nonverbal cues
-- Doesn’t point to objects or show them to others
-- Doesn’t make eye contact at appropriate times
-- Doesn’t look at other people’s faces as much
-- Doesn’t respond to facial expressions or body language
-- Doesn’t smile back at others
-- Lack of peer relationships appropriate to age level
-- Less interest in other children
-- Not motivated by praise or physical affection
-- Doesn’t clearly demonstrate sympathy or empathy
-- Engages in highly repetitive play
-- Obsessively preoccupied with a specific interest or object
-- Lack of make-believe or imitative play
-- Dependent on routines, rituals and familiarity
-- Repetitive body movements (hand or finger flapping, eye rolling, twisting, spinning, rocking, etc.)
-- Preoccupation with parts of objects
-- Easily overstimulated by noises, crowds or lights
-- Extreme dislike of certain sounds, textures or situations
-- Doesn’t have strong response to pain
Sources: Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition); “Helping Children with Autism Learn,” by Dr. Bryna Siegal (Oxford University Press, 2003); Centers for Disease Control and Prevention • Print this
When NBC News first visited them in 1999, they were lobbying Congress for money and attention. But more important, Jon and Portia were learning the scientific details so parents could push the research.
Today the organization can share credit for a new blood bank where researchers look for genes that might cause autism. Scientists say the group has brought increasing focus to autism in many labs.
"It has directly changed the scene of autism research in the United States," says Dr. Michael Merzenich at the University California, San Francisco.
"I've never seen more effective parent involvement in any disorder," agrees Dr. Daniel Geschwind, a genetics researcher at the University of California, Los Angeles.
How does it feel for Jon and Portia to know they can move science and politics like that?
"People told us in the beginning you can't hurry science," laughs Portia. "Well, you can. You really can. You can treat it like a low-budget movie and make it go fast. And that's what we've done."
But of course it is never fast enough. Dov, now 13, remains profoundly affected. And while autism is getting more attention, it still receives far less money than any disorder that affects as many people.
So is Cure Autism Now an ambitious name for their organization?
"It will always be [a] real good idea until it is done," says Jon. "And then when it's done, we'll be happy to retire the name."
