When knowledge and technology are at the cutting edge trying to solve problems that plague our planet, it seems that there are always warring factions. Not only does it happen in the ASD (Autism Spectrum Disorder) community where research camps are warring for funding dollars to solve the puzzle of autism as reported in today's New York Times (condense article to link here)
Autism Debate Strains a Family and Its Charity
The boy did not respond to behavioral therapies, the Wrights said, leading to their daughter’s desperate search for anything that might help. “When you have that sense of hopelessness, and don’t see results, you do things that other people think is too risky,” Mr. Wright said. “The doctors say, ‘Wait for the science.’ But you don’t have time to wait for the science.”
The Wrights agreed to disagree with most of Katie’s views. But her public attack on other parents crossed a line, Mr. and Mrs. Wright said in separate telephone interviews.
“I know my daughter feels deeply that not enough is being done,” Mr. Wright said. “The larger issue is we want to be helpful to everyone, and to do that we need information, data, facts.”
Some in the traditional scientific community worry that Autism Speaks has let Ms. Wright’s experience shape its agenda. She scoffs at the notion. Her parents, she said in a telephone interview, are “courageous” and “trying very hard,” but have been slow to explore alternative approaches.
“You can say it and say it and say it,” she said. “Show me evidence that they’re actively researching vaccines.”
The Wright family’s fight has captured the attention of the bloggers, who are now questioning everything from its office lease to how it makes grants. The charity rebutted the bloggers’ accusations of improprieties in interviews with The New York Times, which examined its IRS forms and read relevant sections to Gerald A. Rosenberg, former head of the New York State attorney general’s charities bureau. He said nothing he reviewed was untoward.
The most distinctive aspect of Autism Speaks is its alliance with Autism Coalition for Research and Education, an advocacy group; the National Alliance for Autism Research, devoted to scientific research into potential genetic causes, with high standards for peer review; and Cure Autism Now, which has championed unconventional theories and therapies.
Which wing of the merged charity is ascendant? Some establishment scientists and parents now fear it is The Mercurys. They point to Cure Autism Now’s having more seats than the National Alliance does on the board of directors and the growing number of research projects that focus on environmental causes.
At a recent benefit gala, featuring Bill Cosby and Toni Braxton, some in the audience were surprised when Mr. Wright announced that all proceeds would go toward environmental research, which generally includes vaccines.
But a list of current research grants on the Autism Speaks Web site suggests that the Wrights, while walking a fine line, are leaning toward genetic theories.
From 2005 to 2007, the charity sponsored $11.5 million in grants for genetic research (compared with $5.9 million by all its partners between 1997 and 2004). It sponsored $4.4 million in environmental research (down from $6 million granted by the partners in the previous seven years). And many of the environmental studies explore what is known as the double-hit hypothesis: That the genes for autism may be activated in some children by exposure to mercury or other neuro-toxins.
Bob and Suzanne Wright say their two-year immersion into the world of autism has been an eye-opener, especially the heated arguments worthy of the Hatfields and McCoys.
Mrs. Wright is aware that the marriage of the Alliance and Cure Autism Now, for instance, could fall apart over opposing ideologies. “I’m not going to let it,” she said. “The truth will rise to the top.”
She is also aware that the rift in her own family needs repair: On Friday, her daughter posted a message on an autism Web site questioning their “personal denouncement of me.”
Yet Mrs. Wright is confident that “we’ll work our way through this.” Autism, she said “has done enough damage to my family. I’m not letting it do any more.”
________________________________
but also such warring happens in cancer research, in mental health (bipolar disorder and depression) research, and in Muliple Sclerosis and Parkinson's Disease research among the many many other diseases we don't yet fully understand and are trying to treat. It is very unfortunate.
One of my friends eschewed conventional cancer treatment and is in remission from her cancer. While I would not pursue such treatment if I was diagnosed with cancer, am I going to condemn her because she did make this choice and it worked for her? Of course not!
Many times there is more than one path to knowledge and wholeness. Neither one is necessarily the better path. Some paths work better for some while different paths may work for others.
What individuals must keep in mind is that we all win when our understanding of the causes of and treatments for illnesses are advanced no matter which the path works better for some. Lives saved and knowledge enhanced without others being hurt is the goal we should focus on. This is what matters. However, as with so many other things, people fight about how to make "the best use" of the donated dollars for research and treatment, cures and prevention. This is not likely to change soon unfortunately. But hopefully these medical puzzles will continue to be solved in the meantime.
No comments:
Post a Comment