Sunday, May 24, 2009

PEOPLE OF ACTION AND HOPE

Another Autism One Conference has come and gone. A-1 has become the best of the autism conferences. It covers the biomedical side of things in an inclusive and comprehensive manner, but it also includes so much more to connect attendees to the often-scary world of autism, from political and legal issues to educational strategies. Just as importantly ⎯ maybe more importantly ⎯ the people who come from around the country, and beyond our borders, meet and learn the most important lesson of all. We are not alone.

This year, I volunteered and made fewer of the sessions than I did in the past. (I was under orders to attend the talk my lovely-and-talented wife, Sym Rankin, gave with the also-talented Sonya Hintz, giving advice on getting mainstream physicians to look past the autism and understand the underlying physical problems. They did a great job.) Instead, I filled most of my time manning the registration/information desk, and just talking to people.

I did make a couple of sessions that helped to place a context on where we are in this troubling time. One was Friday evening’s talk by Mark Blaxill, entitled, “Intellectual and Moral Failures in Autism Science.” It was thoughtful, provocative, and perhaps a little controversial. The basic theme was that the autism epidemic demands moral action, and we simply aren’t getting it from the intellectual elite. Rather than open their eyes, most people in the sciences are content to let the elite do their thinking for them; they are caught up in “expert worship.” (As we saw in recent examples of the worst in mainstream “journalism,” the elite have a willing partner in the media: see here and here).

Mr. Blaxill drew parallels ⎯ and he was very careful to note that parallelism is not the equivalent of proportionality, so this is not meant to be an invidious comparison ⎯ between the silence of the “good Germans” in Nazi-controlled Germany and that of scientists who might suspect there is a truth beyond what they are told to believe. There is a moral requirement to bear witness that is simply not being fulfilled, and we all need to hold the world of science accountable.

Mark Blaxill was also part of the other session I want to mention. He, Kim Stagliano, and Dan Olmsted were part of a panel discussion ostensibly about Age of Autism, which has become the daily news organ of record for some if us. And while they did discuss the history and mission of AoA, they decided to focus on the single most important story they have covered (see here and the links therein). To do that, they turned the program over to three members of the Somali community (two from the community in Minnesota, which has been deeply affected by autism, and one from Toronto). They spoke of the incredible outbreak of ASD within their ethnic group, a people that had no need for the word “autism” in their language until they came to America. What they experienced here told them that the regression of their children into ASD was a result of vaccinations being forced upon them with little explanation and no real justification.

At first, I shared the Somalis’ anger. I felt a twinge of shame that my country, with its tradition of doing right by those who seek its shelter, could first force these newest Americans into a vaccination program that triggered a disease they had no prior knowledge of, and then the same country ignored their plight. But their story did not end with anger. They took action. They organized and found ways to get people to listen to them. And they have hope.

Action and hope: that pretty much sums up my 2009 Autism One experience. I was expecting to see a smaller-than-average turnout, considering the economy and the media attacks on our opinions. I was surprised to see that attendance was actually quite heavy. Many old friends were unable to make it, but there were lots of new friends to be made. And they weren’t shy about asking the veterans for help. I referred several people to the TACA moms, who took a lot of time to give fantastic advice (you ladies are the absolute best, and a special shout-out to Linda and Christina).

The newbies there helped to energize me for the continuing fight. They are already taking action to help their children. And they are filled with hope, something I share with them.

Action is required, and the hope is real.

1 Comments:

Anonymous Anonymous said...

Nice catching up with you and Sym, Wade! I have to agree with you that A1 has become the best of the conferences. :-)

Erik

5/24/09, 10:02 PM  

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