Autism Speaks is smart, very smart

Autism has many voicesWhoever runs the public relations for Autism Speaks is brilliant. It is hard to imagine any other organization in the public eye that appears on the surface to look squeaky clean.  Their deterrents have been relatively unsuccessful in tarnishing that image. Why?

They have managed the media well.  Only Disability Scoop and Autism Daily Newscast questioned why it took so long for them to publicly announce through Rob Ring, chief science officer of Autism Speaks that vaccines do not cause autism,

 “The results of this research are clear: Vaccines do not cause autism. We urge that all children be fully vaccinated.

Really? They are one of the leaders in autism research and the research had been clear for the ten years since they began.

Notice that Suzanne and Bob Wright weren’t a part of that announcement. Despite the publicity it really wasn’t a good “photo op”.  Too many questions could have been, should have been asked… but weren’t.

They finally did discuss it in an interview and managed to skirt the real issues. Worse Bob Wright suggests in the video below that research could prove a link to vaccines and autism in the future.

 

Instead we see the founders at much better PR venues: the Vatican when the Pope met with autistic children, with puppets on Sesame Street, partnering with Google to crack the genetic codes for autism, and fundraisers with celebrities.

Suzanne Wright said in a media statement released on 25 February.

“By sharing what we’ve learned and taking our message to Washington, the United Nations and even the Vatican, we’ve been able to raise awareness and bring hope to millions of families.”

Autism Speaks does not speak for the autistic community.autismspeaksnot

They do however have the support of mainstream and a significant portion of the autism community.  In the media, Susanne and Bob Wright focus on awareness and helping the families of those with autistic children. To give them credit, they have been an instrumental part of raising awareness about autism over the past 10 years. They score a lot less on almost all other issues.

They should be and need to be held accountable and the media does a poor job of it by and large.

It is not only Autistics that take offence with Autism Speaks. At the opposite end of the debate, many autism anti-vaccers have felt that Autism Speaks has not stood up for enough for them and now feel completely betrayed.

As far back as August 2011, Dan Olmsted is Editor of Age of Autism, wrote

“Do us all a favor, Autism Speaks. Shut up, shut down and go away.”

A sentiment which is likely shared by the neurodiversity advocates.

And still they remain the golden child of the media.

I repeat. Autism Speaks is smart, very smart.

Why do Suzanne and Bob Wright continue to adopt a stance of silence on the critical issues? The answer is simple. It works!  Even with well thought out and prepared answers, they manage to “blow it”.  Better not to say anything.

image taken from twitter

ASAN image taken from twitter

Meanwhile, discussion around neurodiversity has not been adequately represented in mainstream media. It was five years ago that Newsweek published an article about Ari Ne’e-man, founder of the nonfprofit Autistic Self-Advocacy Network.

Since then no serious coverage on the issues until Suzanne Wright put her foot in her mouth in her post about Autism Speaks announcement of a national plan, in November 2013.

Both well respected and influential autism advocates Emily Willingham and Laura Shumaker took offence.   It was the final straw for John Elder Robison, the lone autistic board member, who resigned from Autism Speaks.

There have been small pieces in local newspapers criticizing Autism Speak but rarely in the big publications. The best and by far the most comprehensive analysis has been by Emily Shire in The Daily Beast last summer: “Autism Speaks”- but Should Everyone Listen?

Unfortunately, the outspoken neurodiversity advocates* and activists have not engendered much sympathy either. Their stance has often been perceived as hostile and inflexible. Autism Daily Newscast has regularly been accused of being pro Autism Speaks by some in the autistic community whenever we report on the activities of Autism Speaks.

We are told that it is unprofessional to talk about people without talking to them. I only wish the news worked that way because I fully agree. However, time, resources and cooperation are often against us.  Almost without exception when we approach neurodiversity advocates who are also autistic, they often refuse to talk with us or place such restrictions on our own freedom the press that we cannot comply. Then of course, they cry foul play.

A perfect example is the recent fiasco with a report by MTV News. The staff and editor, Caitlin Abber, completely underestimated strong activists like Amy Sequenzia. Ms. Abber was working under the assumption that everyone was playing by the same rules and that was a big mistake.

In her own words Ms. Sequenzia does not trust the media. That is her prerogative and probably with good cause.

When approached for a comment, Ms. Sequenzia was perfectly within her right to request “if it cannot be used in full, I prefer not to comment”. Unfortunately, the reporter entered into dangerous waters by relinquishing editorial discretion when it was not her role to do so.  The emails that followed were probably a surprise to Ms. Abber but quite predictable if she had crossed paths previously with an outspoken neurodiversity activist.

By making her demands immutable, Ms. Amy Sequenzia participated freely in silencing her own important and articulate voice.

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One Response

  1. Michelle R March 10, 2015