Saturday, June 23, 2007

ARROGANCE AND ASSIMILATION, PART 3

In the last couple of posts, I have discussed the arrogance with which Autism Speaks is conducting itself. After its Borg-like assimilation of a relatively small number of like-minded organizations, AS now holds itself out to the world as the voice of autism. Well, mainstream media, and to some extent the political establishment, seems to have gotten the memo; the rest of us now have that much more difficult a time making our voices heard.

There is a danger that anyone who does not toe the Autism Speaks line ⎯ whether that person be a biomedical “curebie” or an anti-cure follower of the neurodiversity philosophy ⎯ will become marginalized and irrelevant. If we’re going to keep moving forward to whatever the truth may be, we all must be heard.

There was a session at Autism One last month, which featured David Humphrey of the Autism Society of America (ASA) and Dr. Martha Herbert, whose call for a new paradigm in autism research has made her one of the best-known and best-respected scientists now working in the field.

For its part, ASA finally seems to be getting the message that something is going on that cannot be explained by genetics alone. Mr. Humphrey cited a number of 10,000,000 autistics worldwide, with a particularly strong rise in Southeast Asia. I can’t vouch for the accuracy of that number, but the stories I see in the international media tells me that the epidemic is not limited to the United States.

Mr. Humphrey touted the memoranda of understanding that ASA entered into with the Autism Research Institute (ARI) and, more recently, with Easter Seals. The latter may be fairly significant given Easter Seals’ record as a provider of services. Under the memorandum of understanding, according to Mr. Humphrey, Easter Seals will make autism its number-one priority. I doubt that we’ll see much in the way of biomedical treatments being offered through this agreement, but it could have a tremendous impact on the delivery of more traditional therapies (speech, occupational, physical, behavioral, etc.). Even for most of us who utilize biomedical treatments for our kids on the spectrum, that will be welcome news.

The alliance between ASA and ARI is more intriguing. Both organizations were the “children” of the late Bernie Rimland. Yet one, ASA, has not traditionally been known as a particular friend of the environmental cause/biomedical treatment communities, while the other, ARI, led the way in pioneering many biomedical protocols through its DAN! programs.

Further evidence of the shift in ASA’s focus comes through its apparent hitching its wagon to Dr. Herbert’s star. She has made it her mission to bring better discipline to the environmental/biomedical communities, which will hopefully lead to better documentation of positive results.

The new efforts of ASA are being viewed in some quarters with a degree of skepticism. After all, the organization has not been known as a great friend of the community. The fear exists that it may merely be setting itself up as an alternate Autism Speaks, with the goal being political control rather than doing the right thing. In particular, there is a fear that the ultimate goal might be the same as what some perceive to be the aim of AS: hijacking the environmental agenda to eliminate any serious consideration of vaccine triggers.

To be sure, as much as Dr. Herbert champions the cause of researching environmental relationships to ASD, I have never heard her use the “v” word. I have no problem with studying the broader processes by which environmental factors may trigger ASD in susceptible individuals. I think that such research will ultimately show the means by which a variety of environmental insults ⎯ including vaccines in many cases ⎯ have injured our children. But ignoring a vaccine connection in the name of political expediency is short-sighted. It would be like studying environmental triggers for lung cancer, but ignoring the impact of cigarettes. There likely are other triggers, but ignoring the single-most pervasive environmental insult will not help us discover the truth.

That being said, I welcome the ASA initiatives, provided they don’t attempt to hold themselves out as speaking for the interests of my child and my family. Inasmuch as it has not yet discarded its slogan proclaiming itself as “The Voice of Autism,” I’d have to say that the jury is still out on the one. But ASA seems to be going about building alliances rather than a single monolithic entity, which I believe to be a more honest approach than that used by Autism Speaks.

Another effort at alliance on the horizon is Autism United, a new alliance of organizations mostly from the New York area. It hopes to find the common concerns of families living with autism, and provide new avenues for research and treatment. Although its immediate focus is regional, some of the organizations are national, and the hope is to replicate the model in other areas. Again, the purpose is to come together to find common ground and provide real help, and not to become the sole voice of autism.

Other than Autism Speaks, none of the “alliances” seek to completely “assimilate” other organizations. None appear to have the arrogance and audacity to presume to talk for all interests in the greater autism community, and to attempt silencing anyone who dares to take a position other than that of the collective.

And so the groups that have not yet been assimilated are doing whatever it takes to maintain their identities and the integrity of their own corporate vision. That holds true for organizations regardless of their specific viewpoints or missions.

I want to emphasize that my problem with Autism Speaks is not just because it doesn’t mirror my own opinions about causation and treatment. Rather, it is their relentless drive to present itself as a “big tent” organization that speaks for us all, even as it runs over anyone who either has an independent viewpoint or might steal the spotlight.

Recently, John Gilmore related what happened when A-CHAMP worked on an issue of interest to all parents, an issue that was unrelated to the vaccine issue.
Last year A-CHAMP worked liked demons to put together a coalition of every autism advocacy and membership group in New York to get our autism health insurance reform bill passed here. We repeatedly asked for permission to collect signatures for a petition to get the bill passed at the Autism Speaks walks, which at the time were the largest gatherings of the autism community in New York, and are held in public parks (so permission isn't even necessary anyway except as a courtesy to Autism Speaks). We couldn’t even get a phone call back. We have seen the same behavior in New Jersey and Westchester County. Collecting signatures at walks had never been a problem with NAAR.

After the bill was passed, Autism Speaks issued a press release quoting the director of the Long Island walk, the same guy who refused to answer multiple phone calls and emails, about what a wonderful victory it was. And then they lauded Bob and Susan Wright at the next walk for the great work they did on the insurance bill.

That’s Autism Speaks.

Indeed it is. In the world of Autism Speaks, nothing positive in the world of autism can occur without its involvement, even if it did nothing.

That’s arrogance. That’s Autism Speaks. What we really need is an organization named “We Listen.” Perhaps with one of these new alliances, we'll get that. Maybe, just maybe, we'll get a tent we can feel comfortable having over us. It doesn't have to be as big as Autism Speaks; it just needs to be big enough for us to feel welcome.

AFTERWORD:
After posting this, I realized that I should have made it very clear that any beef I have with the leadership and direction of Autism Speaks and the organizations it swallowed up ends with the leadership. There are many, many fine people who volunteer their time and talents to those groups with more than just good intentions. They believe that they are doing the right thing, and it is not my intention to call them wrong or to denigrate their efforts. They are parents, grandparents, brothers, sisters, aunts, and uncles. They are my friends. They too love someone with autism, and they have my respect.

MORE AFTERWORD:
Ginger has been nice enough to mentoin my recent posts, and here she presents a little more information about the recent moves by ASA. Although it all sounds very good, our experience with Autism Speaks should give us all cause to remain a little skeptical. Mr. Humphrey, I shall follow ASA's progress with interest, and a little hope.

3 Comments:

Anonymous Anonymous said...

Hello,
My name is Maria Counts and I work for a publishing company that focuses on books about autism/asperger syndrome. We are currently working on a children's book entitled "Autistic Planet."
If you would be interested in contacting me via e-mail I will send you a press release and if you would like a gratis copy for review as well.
Thank you,

Maria Counts
mcounts@jkp.com
Jessica Kingsley Publishers, Inc.
http://www.jkp.com

6/27/07, 12:51 PM  
Blogger Ian Parker said...

Hi Wade,

Thanks for writing this series about Autism Speaks. I have to admit that a) as a Canadian and b) someone who has been a bit distracted recently, I haven't spent a lot of time (okay, I haven't spent any) thinking about AS or who speaks on behalf of autism issues in the U.S. My only previous thoughts re: AS related to that infamous video.

But given your series, the kerfuffle going on elsewhere in the autism community about who gets to speak, and the influence of the autism debate in the U.S. on what happens elsehwere, it is something that we all should be spending a lot more time thinking about.

Thanks for raising this issue.

6/28/07, 4:45 PM  
Blogger Randy said...

As Wade knows, I've always been a little skeptical wrt the vaccine theory. That said, enough parents accept that theory for its proponents to have a proverbial seat at the table. That's particularly true if, as Wade suggests, someone is bringing more discipline to the research on the issue.

7/15/07, 7:47 AM  

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