By J.B. Handley
Nancy Minshew, M.D. sits on the Scientific Advisory Board of, you guessed it, Autism Speaks.
Autism Speaks drives me nuts. On the one hand, they often represent themselves as speaking for our community. On the other hand, no one at Autism Speaks ever seems to speak up for anything that might help our kids today.
Let’s take a pause and look back at Autism Speaks’ moment of shining glory: the passage of the Combating Autism Act (which actually took Don and Deirdre Imus to push through). Bob Wright went down to Washington and addressed the Senate of the United Sates and here, from an Autism Speaks press release, is what he said:
“The public health crisis posed by autism requires an extraordinary response. With every new child diagnosed with autism costing an estimated $3 million over his or her lifetime, we cannot afford to rely on standard, ‘business as usual' practices,” stated Wright in his testimony. “The autism crisis demands a focused, coordinated, and accountable response by our public health agencies, similar to the federal response to the AIDS crisis in the 1990s, with line-item appropriations for autism intervention, surveillance and research tied to a strategic plan.”
A crisis? Similar to the response for AIDS? Wasn’t/Isn’t AIDS an epidemic?
I think most members of Congress would be shocked to learn that Autism Speaks own “experts” actually can’t agree on the most fundamental of issues: whether or not we have a growing prevalence of autism amongst our children. As we all read in the paper this week and last, Dr. Nancy Minshew, a government funded-researcher, someone who spearheads one of the NIH’s nine Centers for Excellence created by Congress, an “expert” on autism as she would tell you, and a member of Bob Wright’s own Scientific Advisory Board, is certain that there is no epidemic whatsoever. In her world, two simple things have happened: we now call schizophrenic kids autistic, and we now diagnose verbal children, too. End of story.
Let’s get back to Bob Wright and Autism Speaks for a moment. If Bob Wright had invited Dr. Nancy Minshew, a member of his own organization, to join him in meeting members of Congress, there’d be no Combating Autism Act because Bob Wright was in D.C. telling Congress we have a GROWING problem, an issue of increased prevalence, an EPIDEMIC that we all need to deal with. And you know what? It resonated with Congress, because it’s what they were hearing in their own districts and states from their own constituencies.
I took a look at Autism Speaks website and I couldn’t find a statement anywhere that dealt with the issue of rising prevalence. Nuetral. Like Switzerland. How can that be? How can you be the largest, most well-funded autism organization in the world and not know if we have a growing problem or not? If you think we do, say so. And, publicly disagree with Dr. Minshew. If you think we don’t, say so. Bob Wright sure as hell shared his point of view in D.C.
And, if you actually aren’t sure if we have a growing problem or not, let me provide some advice: stop everything else you are spending research dollars on and figure it out. Don’t wait for the CDC to publish their backward-looking study 5 years from now to tell you nothing. If you don’t know if we have a growing problem or not, how can you reasonably know where to look for cause?
This is the fundamental issue in the autism debate right now: growing problem, it’s the environment; no increase, genetics. Geneticists like Dr. Minshew need there to be no real rise to keep the genetic funding rolling in. Parents like me, living amongst these kids, can’t believe what some of these “experts” are saying.
So, Autism Speaks, I plead with you: Speak up. You put out a policy statement on Mercury and Autism, do the same for the issue of rising prevalence. Put Dr. Minshew or me in our proper place. Or, admit to the world that you don’t know and that you aren’t doing all that much to find out.
If you are a parent, call Autism Speaks world headquarters (212-252-8584) and politely ask them: “Does Autism Speaks have a position on whether or not they believe there has been a real rise in the prevalence of autism? Yes or no? Does Dr. Minshew, as a member of Autism Speaks’ Scientific Advisory Board, speak for the organization?”
And, please forward this to any members of Congress you may know, I’m sure they would find this fascinating.
And, Bob Wright, I encourage you to go back down to Congress, look the same people in the eye who passed your bill, and explain to them why the organization you founded no longer can compare autism to AIDS.
Because the “experts”, in this case your own “experts”, have spoken.
JB Handley is co-founder of Generation Rescue and Editor at Large for Age of Autism.