Page one of today's NY Times has an excellent article about the rift within the family that founded the charity Autism Speaks, regarding the cause of autism. It speaks well to how beliefs and strong feelings drive this issue and relates well to my post last week. This single family's feud mirrors the debate in the autism community at-large. The large and generous charity has made an effort to be "agnostic" with regard to what it funds, according to one of its board members, but the daughter of the founders, Katie Wright, has an autistic child and believes that environmental causes are to blame. Other organizations concentrate on funding less conventional theories.
Strong beliefs and debates are not going to determine the causes of autism, research will. An ill-informed or biased hypothesis is never going to lead to good research but, if one can ask a question about causes (environmental or organic) that is truly unknown, and design responsible research (whether the theories are well-trodden or unconventional), that research should be useful. Discoveries in science rarely follow a path straight from the money to the cure. Unraveling the mystery of the cure of autism needs the tools of science the minds of creative mavericks, and the support of people who care to know the truth - whatever it is. If one looks at current research, autism is still the story of the blind men and the elephant. Lots of people are describing a small piece of the puzzle, but no one description has yet to satisfyingly encompass everything we know. Sometimes backing up or looking at the problem sideways permits a creative breakthrough. The vaccine theory was superficially convincing for a time but the science against it now is stronger, but as long as these organizations have informed scientists reviewing their funding, a conventional or a conservative funding strategy is not going to decide this debate - they don't have that much control over the truth. Evidence will accumulate over time and at some point the truth will become weighty enough to tip the balance.
In the long run, research may well lead us to redefine this single word - autism - comprising a spectrum of related disorders, into more homogeneous subgroups, allowing us to look at the problem afresh. Many current researchers are already forming their questions this way. Asking good questions is a creative act. Good creators know they must continually shake up their perspective to stay active in pursuit of a solution. Loud contrary voices may have cause hurt in this family and in these organizations which I hope they can heal, but they most likely keep the research vital and honest.
Monday, June 18, 2007
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