01-18-2006, 05:51 PM
You know, the Wrights seem well-intentioned, and they certainly have the wherewithal. But . . .
Two small comments on the following new story from Dan Olmsted (likely neither is an original observation):
(1) Am I the only one who is tired of the "1 in 166" statistic that is thrown about so much? Where did it come from? It sounds suspiciously precise. My hypothesis is that someone, somewhere estimated an incidence of about 6 in 1000. Whether correct or not, "6 in 1000" is an order of magnitude estimate, and does not purport to be overly precise. Then someone else divided 6 into 1000 (probably this person did it on a calculator, not in their head). He or she then decided it would be easier for the public to understand "1 in 166," even though that implies a level of precision that surely does not exist. Now "1 in 166" is bandied about as if it were hard data.
(2) "I think there are only two people who know what's going on with these kids, and those are the parents in these families."
Well, excuse me, but just maybe there is someone being overlooked?
Those of us who post on AFF are able to communicate, at least on the computer; and maybe it is hard to understand the perspective of those who find communication more challenging. And reporters can certainly make mistakes. But the perspective reflected in this statement is a bit galling.
Unquestionably, parents can offer valuable observations that should not be dismissed lightly. However, to suggest that parents "are the only two people who know what's going on" reflects a strong bias. That bias may be on the part of the researcher, or it may originate from the reporter, it's hard to say.
Two small comments on the following new story from Dan Olmsted (likely neither is an original observation):
(1) Am I the only one who is tired of the "1 in 166" statistic that is thrown about so much? Where did it come from? It sounds suspiciously precise. My hypothesis is that someone, somewhere estimated an incidence of about 6 in 1000. Whether correct or not, "6 in 1000" is an order of magnitude estimate, and does not purport to be overly precise. Then someone else divided 6 into 1000 (probably this person did it on a calculator, not in their head). He or she then decided it would be easier for the public to understand "1 in 166," even though that implies a level of precision that surely does not exist. Now "1 in 166" is bandied about as if it were hard data.
(2) "I think there are only two people who know what's going on with these kids, and those are the parents in these families."
Well, excuse me, but just maybe there is someone being overlooked?
Those of us who post on AFF are able to communicate, at least on the computer; and maybe it is hard to understand the perspective of those who find communication more challenging. And reporters can certainly make mistakes. But the perspective reflected in this statement is a bit galling.
Unquestionably, parents can offer valuable observations that should not be dismissed lightly. However, to suggest that parents "are the only two people who know what's going on" reflects a strong bias. That bias may be on the part of the researcher, or it may originate from the reporter, it's hard to say.
Quote:
The Age of Autism: The Wright approach
By DAN OLMSTED
UPI Senior Editor
The head of NBC is donating more than $2 million to a Baltimore research institute to do something innovative: listen and learn from the parents of children who have autism.
Bob and Suzanne Wright's organization, Autism Speaks, is giving $2.3 million to the Kennedy Krieger Institute to fund the first year of development of an autism database that eventually will connect parents, educators and researchers. The idea: Through an open, interactive process, those participating will be able to share information, be part of ongoing studies and look for clues to causes and treatments for autism spectrum disorders, which now affect 1 in every 166 U.S. children.
The Wrights' involvement follows the diagnosis of a grandson with autism. Wright, chairman and CEO of NBC Universal and vice chair of General Electric, founded Autism Speaks (http://www.autismspeaks.org) with his wife last February.
A number of parents' groups already have made pioneering use of the Internet to trade information on treatments and push for more research into the disorder, so in a sense the Wrights are taking a page from that digital playbook. But many of those same parents have complained that researchers tend to reject their eyewitness experiences because they don't meet scientific standards.
What's more, the range of services that children with autism require -- from speech therapy to behavioral approaches to special education to medical treatment -- is often poorly coordinated.
"I think there are only two people who know what's going on with these kids, and those are the parents in these families," Dr. Gary Goldstein, president of Kennedy Krieger, told Age of Autism. The institute is a leading research and treatment center for children with developmental disorders from autism to spinal-cord injuries.
"What we are going to do is have an engaging, interactive Web site that asks you not only for registration information but keeps asking you -- symptoms, what you're doing with the child, what it's costing you to do this, how hard is it to find these services."
That will allow parents, for example, to see what other parents are doing for sleep problems that often are part of autism. Researchers could look at the same data to study whether some approaches seem more effective.
"There would be a matching service where you'd be asked, 'Is it OK for a researcher to contact you by e-mail?'"
Wright's group pledged to help the effort for the next three years, with Dr. Paul Law of the Kennedy Krieger Institute in charge of the project. Parental and scientific advisory boards will help guide the Web site, which likely will be launched in about a year.
"Our expectation is that, by creating a unique network of research scientists and families, the database will become an unprecedented source of information that will dramatically increase our knowledge and understanding of autism spectrum disorders," Law said.
--
E-mail: dolmsted@upi.com
By DAN OLMSTED
UPI Senior Editor
The head of NBC is donating more than $2 million to a Baltimore research institute to do something innovative: listen and learn from the parents of children who have autism.
Bob and Suzanne Wright's organization, Autism Speaks, is giving $2.3 million to the Kennedy Krieger Institute to fund the first year of development of an autism database that eventually will connect parents, educators and researchers. The idea: Through an open, interactive process, those participating will be able to share information, be part of ongoing studies and look for clues to causes and treatments for autism spectrum disorders, which now affect 1 in every 166 U.S. children.
The Wrights' involvement follows the diagnosis of a grandson with autism. Wright, chairman and CEO of NBC Universal and vice chair of General Electric, founded Autism Speaks (http://www.autismspeaks.org) with his wife last February.
A number of parents' groups already have made pioneering use of the Internet to trade information on treatments and push for more research into the disorder, so in a sense the Wrights are taking a page from that digital playbook. But many of those same parents have complained that researchers tend to reject their eyewitness experiences because they don't meet scientific standards.
What's more, the range of services that children with autism require -- from speech therapy to behavioral approaches to special education to medical treatment -- is often poorly coordinated.
"I think there are only two people who know what's going on with these kids, and those are the parents in these families," Dr. Gary Goldstein, president of Kennedy Krieger, told Age of Autism. The institute is a leading research and treatment center for children with developmental disorders from autism to spinal-cord injuries.
"What we are going to do is have an engaging, interactive Web site that asks you not only for registration information but keeps asking you -- symptoms, what you're doing with the child, what it's costing you to do this, how hard is it to find these services."
That will allow parents, for example, to see what other parents are doing for sleep problems that often are part of autism. Researchers could look at the same data to study whether some approaches seem more effective.
"There would be a matching service where you'd be asked, 'Is it OK for a researcher to contact you by e-mail?'"
Wright's group pledged to help the effort for the next three years, with Dr. Paul Law of the Kennedy Krieger Institute in charge of the project. Parental and scientific advisory boards will help guide the Web site, which likely will be launched in about a year.
"Our expectation is that, by creating a unique network of research scientists and families, the database will become an unprecedented source of information that will dramatically increase our knowledge and understanding of autism spectrum disorders," Law said.
--
E-mail: dolmsted@upi.com