A (Pun-intended) Shot on Division

I haven't yet written here about Dr. Eric London resigning from Autism Speaks. So here goes.......

(Getting ready for being given numerous links to numerous articles, websites, studies studies studies pointing to a "link" between autism and vaccines (there is no link), informing me I'm wrong, and so forth.)

Dr. London was a member of Autism Speaks' Scientific Affairs Committee. In his resignation letter posted on the Autism Science Foundation's website, Dr. London specifically noted that Autism Speaks' position that "there might be rare cases of ‘biologically-plausible’ vaccine involvement" is "misleading and disingenuous." As has been pointed out 'round the internet (here is Newsweek's coverage), earlier this year, Alison Singer resigned from her position as Executive Vice President of Autism Speaks; she specifically cited "concerns about Autism Speaks’ policy on vaccine research" as one reason for her decision. Singer is one of the co-founders of the Autism Science Foundation, along with Karen Margulis London. And, Karen Margulis Longdon and Dr. London were co-founders of the National Alliance for Autism Research (NAAR) which announced it would be "partnering" with Autism Speaks back in February of 2006; a year later, another autism organization, Cure Autism Now (CAN) also went under the aegis of Autism Speaks.

So what's going on?

Leaving aside conspiracy theorizing and attendant superstitious musings, I wanted to reflect on Dr. London's resignation by picking up on a topic that Dora has been writing about, that of the divisions among the professional, parent, and self-advocacy communities.

Like many autism groups, Autism Speaks is an organization with a focus on research and science and the more amorphous concepts of "autism awareness" and "autism advocacy."

Autism Speaks (like many autism organizations) is run by the parents of children on the spectrum. The topic of vaccines and autism highlights the divisions Dora has noted. Vaccines in particular are a topic among parents of autistic children and of children these days more generally. It is a topic that is divisive in itself, and it is a topic that is not about autism. It's a topic about a hypothetical cause of autism that some feel very passionately about, and perhaps all the more so as it becomes clearer that there is no link between vaccines and autism. Indeed, at times "there is no link" seems to be a stimulus for a full-barreled response about how those who say "there is no link" are simply wrong, wrong, wrong; are wilfully ignorant; aren't listening to what "real parents of real autistic children" have to say; and the like.

The subject of vaccines and autism has certainly received a great deal of attention in the autism community and also from the mass media and it seems that this will continue to be the case (as Mike Stanton notes in a post entitled Wakefield, distortion and the Sunday Times on Left Brain/Right Brain). This attention, while understandable, is misplaced and ultimately to the detriment of everyone in the autism community. There's plenty of uncertainty about what exactly causes autism; it is most likely genetic in origin. But, as I wrote back in February:

Dora's and my first action on this sight----Promote Respectful Language---asked people to think at least twice about the language they use when talking about autism and when talking to individuals on the autism spectrum. One reason that the alleged "link" of vaccines to autism is turning out to be so detrimental is that this hypothesis of autism causation suggests that having autism means an individual is "damaged" or has been "injured," or even "poisoned"; that autism is something that an individual can "get." Autism, it's implied, is analogous to some sort of external agent, some thing "outside" a child, that somehow "gets into" him or her and "makes" him or her "become" autistic.

Often I've wondered if the energy and emotion that gets put into the "vaccine issue" is displaced from worries and anxiety about the real issues at hand: The lack of supports and services, the paucity of schools, the painful attitudes and misperceptions about individuals on the spectrum---I could go on and on. If one-tenth of that "antivax/pro-vaccine safety" energy were directed to advocating for services and supports for individuals on the spectrum; for training more teachers and therapists; for creating more classrooms and schools and group homes and supported living environments for individuals on the spectrum.......

Kind of hard to imagine?

I think we can try. Doing so may not patch up the divisions and I don't know if they ever can be.

But I do know, as my son has gotten older, it's become more and more clear how he always was as he is, autistic; how he's always been Charlie. A shot didn't make him who he is: One could only wish that it were all that simple. But it isn't and it's been a good thing, a great project, for Jim and me to devote our energies, emotions and passions to making this world here and today a place that he can be in; to try to change the world for a boy and individuals like him who are too often excluded---divided---left out---forgotten. And we should be wary lest we get ourselves too wound up in theories, conspiracies, and "let's find someone/thing to blame for autism!" kind of thinking, and lest we forget about what really matters.