Monday, June 18, 2007

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 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.


Dadof6Autistickids said...

I too have been reading a lot lately about all the in-fighting in the Autism community. It reminds me of Jr. High when the main combatants went to the sand pit near the school right after the last bell.

We would like to know, not only how and maybe why our 6 children are on the Autism spectrum, but what can we do to help them today. We feel that from our research that it must be a combination of genetics and environmental factors.

Autism Speaks has become the Autism fund raising 800 lbs gorilla. They are doing a lot of research and we are currently involved in the genome study they have funded. What I'd like to see is a branching out from a research mainly mode to include areas that can affect families now. Treatments, diet, education, etc. Follow-up on areas that are having some success and see what else a bunch of money may reveal. Then let us parents know what HELPS our kids. Something now, not just research of causes. That's a 'nice to know' for us that already have Autistic children.

Autism is a spectrum disorder. We need a spectrum approach that can allow the funding to be used for each group to have their own soap box. If Autism Speaks can put all of us under their umbrella, great, if not lets support a group that will.

I named our new blog Autism Bites because we were surprised by the news that all six of our children were ASD, 'snake bit' if you will. I would like to call for a stop to all the Autism community fighting. If well funded groups truly want to make Autism a thing of the past put your money where your mouth is. Not into your pockets, while providing lip service only.

Anonymous said...

Dear Mike,
Thank you for Autism Bulletin.
I read the article in the New York Times and discovered that I am a member of the double hit hypothesis. Something in the environment is bringing out the autism that is in the genes.
Many things have changed besides more vaccines, which are required for school, including back to sleep. I am not saying back to sleep causes autism, but how do we know? I would like to see many causes explored to help future generations.
What is more important is what to do to help the children and their families.

Irene said...

I admit, I too, have been sucked into the drama. There are so many commentaries on the trial, the Wright's statement, Mr. Kirby's books and goes on and on. Most of the time I see no olive branches, just mud-slinging.

Michael Goldberg said...

I think that a willingness to engage people who may not share exactly the same priorities, to discuss them openly and figure out where the common ground is, is a place to start. We cannot stop people from having conflicts, but the progress we all seek can stop if we let the conflicts overtake everything that unites this community.
Thank you all for your constructive comments.