ARROGANCE AND ASSIMILATION, PART 1

Illustration courtesy of Lenny Schafer.

There are names that elicit a visceral reaction at their mere mention. Autism Speaks has now claimed that distinction. It has come close to its goal of uniting the autism world; it is equally despised in both the neurodiversity community and the biomedical communities.

I used to refer to AS as the “Pac Man” of autism organizations, wandering around chewing and devouring all that strayed into their path. A more apt characterization has come from Lenny Schafer (see illustration), who has likened AS to the fictional Borg. For those who are not Star Trek fans, the Borg are a race that falls somewhere between carbon-based life forms and machines. They roam the universe as a collective, “assimilating” everything and everyone they come upon. If anyone dares to object to assimilation, the Borg arrogantly inform the objector that “resistance is futile.”

And that has been the story of AS, assimilating NAAR and CAN, and telling the rest of us that “resistance is futile.” We should simply get with the program and toe the AS line.

Bob and Suzanne Wright started AS after their grandchild, Christian Hildebrand, was diagnosed as being autistic. To give them credit, it was a positive step when one considers that people of power ⎯ as the Wrights certainly are ⎯ often go to great lengths to hide away autistic family members rather than publicly acknowledge their loved one.

Recently, though, the Wrights seem more inclined to put a little distance between themselves loved ones: specifically their daughter, Katie Wright (the mother of, and the one who lives with and cares for Christian every day). Although she is always careful to make it clear that she is not a spokesperson for AS, Katie and Christian are in many ways the faces of the organization. This is what Bob and Suzanne Wright had to say in that regard lately:

Katie Wright is not a spokesperson for Autism Speaks. She is our daughter and we love her very much. Many of Katie’s personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks.

Autism Speaks is committed to finding the causes of and a cure for autism. We are proud of our scientifically based research programs, including those established by NAAR and CAN, and will continue to pursue them. The members of our scientific advisory teams have impeccable credentials and we fully support them. There is no question that genetics plays the leading role in autism and that environmental triggers are key issues for many children. These areas, as well as biomedical treatments, need huge research support.

Autism Speaks merged with NAAR because it believes in and supports its scientific mission, methods, and advisory board. We are proud of the accomplishments of NAAR and grateful to the families and volunteers who created it. They are a tremendously valued part of Autism Speaks. We welcome input from volunteers and parents/guardians of children with autism of all ages, including adults with autism. We apologize to our valued volunteers who were led to believe otherwise by our daughter’s statement.

Interestingly enough, the sentence about loving their daughter was not part of the statement when it was first posted to the AS site, but was added later.

What prompted the statement was a two-hour interview Katie gave to David Kirby, which was videotaped and released by F.A.I.R. Autism Media (a 30-minute version is available for viewing here). In the interview, Katie referred to both of her parents as “courageous,” and she expressed unabashed pride in them. There’s absolutely no reason to believe that there is any lack of love between Katie and her parents, so the terse disavowal emanating through AS is rooted elsewhere.

Just as she has done in other appearances, including her recent Oprah appearance, Katie made clear her belief that Christian’s regression into autism ⎯ and her vivid description makes clear that Christian regressed into and was not born with his autism ⎯ was triggered by vaccinations. And she goes further by describing the progress Christian has made after biomedical interventions, and also by praising controversial figures like Dr. Andrew Wakefield. That’s going just a little too far for some in the AS camp even when it is made clear that those opinions are not expressed on behalf of the organization.

In her interview, Katie hinted that the shameful emphasis on genetic research to the near exclusion of environmental research by AS thus far is solely due to the ongoing influence of the NAAR board, resulting from the merger between those organizations (i.e., the assimilation of NAAR by AS). But is she perhaps being a little naïve about her parent’s views.

Recently, Bob Wright gave an interview to TV Week, commemorating his recent retirement as the head of NBC, and at the end of the session, he was joined by Suzanne so that the two could discuss their involvement with AS:

TVWeek: Is it a problem where throwing enough money at it will help us find out why this is happening so much, as well as helping these kids to live a life that’s more independent?

Bob Wright: Well there’s no question that money plays a good role here.

Suzanne Wright: Oh sure, look what it did for breast cancer and AIDS.

Bob Wright: You have to throw a lot of money at this. There is money that’s been invested here in genetic work, and I think most people who follow autism scientifically would suggest that genes have a great deal to do with both the cause and the cure. The theory is if you can identify the genes then you’re closer to being able to do something about them. ... But that’s also a very, very expensive process. And it takes a long time. And so it doesn’t create the kind of hope for parents who currently have [autistic] children. And our [job is to] balance that ⎯ we have to try to help parents with children right now, but we have to help the community by zeroing in on the cause, and that’s where genetic work becomes critical.

Suzanne Wright: I believe there’s a cause, there's a genetic predisposition, but I believe there's an environmental factor going on here that’s putting these kids over the top.

Bob Wright: While we believe the genes play a role in this, there’s clearly all sorts of difference in these children. So it’s not like one set of genes, one set of kids. The kids develop this in different periods and have different impacts, which clearly identifies there’s some environmental experience that takes place that sets off some subset in these children. And there has been almost no money spent. And this is very tough scientific work to do. It’s epidemiology and everything. There just hasn't been the motivation on the part of the [National Institutes of Health] or the part of the CDC to be able to do this, much less the funds. And lastly, there is this issue of looking for biomedical markers, which is another way of saying let’s move away from the gene search, let’s look at conditions that we see and let’s look at the children who have these particular conditions, how they differ from other children. ...

Suzanne Wright: Something happened to Christian. Something happened to him.

Bob Wright: We’re on a hunt. We’re going to be on a hunt for biomedical markers, which is not the same as a gene search. ... I think we’re three or four years away from accomplishing quite a lot. That’s what I believe.

Suzanne Wright: And we got a lot accomplished already. We got the Combating Autism Bill passed. It was signed into law. [And on March 20 Sen. Hillary Clinton, D-N.Y., and Sen. Wayne Allard, R-Colo., introduced the Expanding the Promise for Individuals With Autism Act of 2007.] ...

We’ve now merged with every major autism group in the country. So we are the largest. And I was just invited to Qatar by the princess and the amir because she is having a symposium over there for special needs children ... and over there it’s taboo talking about this. And so she’s invited me to come over with the Ad Council because ... her people were most impressed with how broad the Ad Council campaign was over the last year and how much it spread across the country. So ... I'm going over there with the Ad Council and we’re going to give an hour of Power Point presentation. She’s going to let me show my movie. Only three movies are going to be shown and mine’s one of them. ... It's going to be very global, because it’s a global problem.

Mr. Wright clearly implies that environmental research can wait until we’ve found a way to identify what children are specifically at risk. In other words ⎯ and his use of the term “biomedical markers” cannot change this fact ⎯ the focus of AS funding is genetic.

So what’s the problem there? Why can’t the groups who have not yet been assimilated just raise their own funds for environmental and biomedical research? Unfortunately, sources of contributions are not endless, and AS has set itself up as the “only game in town.” The message is clear; assimilate or be irrelevant.

It’s one thing to be an “umbrella.” It’s another to turn off the pumps and let drown those you claim to serve.

Next time, we’ll look at the ruthlessness with which AS attempts to silence any dissenting views.