The Autism Puzzle Shows Its Complexity in Autism Speaks Controversy

That members of the same family disagree on how best to deal with a child's autism is not news. (Concerns about divorce among parents of autistic kids recently led the National Autism Association to announce a new program to provide marriage counseling to keep parents together.)

What is news is that members of the Wright family -- founders of Autism Speaks, arguably the nation's most successful charity at raising public awareness, advocating for Congressional support and collecting dollars for autism research -- are disagreeing, vehemently, in public, about the way to deal with every child's autism. The New York Times' front-page story today, "Autism Debate Strains a Family and Its Charity" illustrates how people united in their desire to help people with autism can come into conflict.

The quarrel between Bob and Suzanne Wright and their daughter Katie Wright, stems from comments Katie made to David Kirby, author of "Evidence of Harm," which argues that mercury in vaccines given to young children is a cause of rising autism rates. (You can access a portion of the interview here via AutismMedia.org.) Katie's son Christian has autism and his diagnosis in early 2004 led her parents to form Autism Speaks. The organization has absorbed other advocacy and fund-raising organizations including the National Alliance for Autism Research and recently Cure Autism Now.

In her interview with Kirby, Katie Wright praised both her parents as wonderful, strong advocates. And she insisted she was not commenting as a representative for Autism Speaks; but at the same time, she argued that it was time for groups like Autism Speaks to put genetics-related research on the back burner in favor of looking into the possible environmental causes for autism spectrum disorders. "I think that people who have been doing this a long time, pioneers who were doing this in the early 1980s when nobody was paying attention, these people are more conservative researchers and parents, are so resistant to change, I think they are frightened that they could have been going down the wrong path," she said, adding, "It's clear to me that we have been going down the wrong path in research. ... It's time to step aside" and let the parents of younger children take the lead, she said.

Her remarks sparked dueling statements, first from Autism Speaks disavowing Katie's remarks as not representing the group. Then Katie Wright posted a statement expressing disappointment in Autism Speaks, and reasserting that "it is my greatest hope that Autism Speaks as well as the scientific and medical community will fulfill their promises and commit themselves to the environmental, biomedical and therapeutic research so urgently needed." (The quote comes from a longer statement posted on the home page of the National Autism Association.)

The Wright's family drama illustrates a number of themes, not the least of which is the desperate urgency that parents like Katie feel to help their children. That's undeniable and widely shared. But it's also clear that the biggest challenge facing the autism community -- including people with autism, their families, clinicians, educators, researchers, service providers, advocates, policy makers, advocates -- is that its members frequently and loudly present themselves as belonging to several different communities.

There are people who believe in behavioral approaches. Those who see dietary restrictions and supplements as essential. Those who believe environmental causes, like mercury preservatives in vaccines, are autism's cause and therefore must be the primary focus for research and experimental treatments. Those who see the benefits of prescription medication. Those who see a combination of some of these as the way to go. Others who emphasize acceptance as the most important approach. And that doesn't cover everyone.

So it's not difficult to find, say, a group of families who have autistic children and find all of these beliefs and varied approaches represented in the gathering. They may be united in their desire to help their children, but they are not united in how to go about it.

Surely the complex and varied nature of autism spectrum disorders, and how they affect the lives of the people touched by them, makes this dynamic impossible to avoid -- at least until we have more answers. More clarity about what autism is, and what different autistic subtypes are. More information about its causes. More answers about effective treatments that resonate with more people. More supports in more communities for more individuals and their families. And more understanding.