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.
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.
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.
Ms. Sequenzia goes on to complain that MTV News didn’t do what she wanted by removing her quote, letting the rest of the article stand and informing the readers that her quote had been removed. No wonder MTV News chose to withdraw from the discussion. It was complete capitulation or nothing.
I love the title of Ms. Sequenzia blog, “Disabled people being silenced by unethical media”.
Come on … MTV News went ahead and published the article without the input from Autism Speaks and covered themselves ethically by adding at the bottom “MTV News has reached out to Autism Speaks for further comment.” Ms. Abber agreed to remove Ms. Sequenzia’s quote and let the article stand as is.
By making her demands immutable, Ms. Sequenzia participated freely in silencing her own important and articulate voice.
What I find most amusing is that, while MTV News is being criticized for their actions, somehow Autism Speaks ends up being blamed for choosing not to participate. They had no idea what was happening. Autism Speaks wasn’t even involved in the whole situation other than having been requested to comment – they did not. This is exactly what they always do for any touchy subject, not just those related to autistic persons. Even Ms. Sequenzia acknowledges this by saying in her publicly published correspondence:
“If Autism Speaks does not want to respond, this is not a lack of balance, it is because they never address what we say. “
How Ms. Sequenzia can add “Why my comment, a request from the writer of the article, needs the green light from Autism Speaks to be published in full?” is quite beyond me.
There have been subsequent tweets that implied Autism Speaks had pulled strings to get the article withdrawn. From what I have seen of the Public Relations, that isn’t their style and I don’t think they care.
And there is the rub. They don’t care. Which is what is so infuriating to those of us who do.
Conspiracy theories aside, neurodiversity advocates are like flies to Autism Speaks; busy flying around making noise but only being a slight nuisance. Autism Speaks does not care and certainly would not bother to stifle the article. There is no indication they have ever resorted to legal tactics and as a nonprofit the legal costs would be marked and eventually discovered. That would make for bad press. And even if they had, any legitimate news organization would never have given in. MTV News would have put every last penny behind protection “the freedom of the press“. If not, they might as well have closed up shop.
And a lawsuit would make for such great reading.
Why would Autism Speaks choose to participate? There is absolutely nothing that they can say that would enhance their image. It is a no win situation. The same cannot be said for some of the neurodiversity advocates. There was much ground that could have been made but the opportunity was thrown away.
But MTV News was also smart. They figured out what was happening and decided to take their marbles and go home. They stopped caring as well. This is the great danger… you keep pushing people and after awhile they won’t care.
Lesson One:
Saying nothing often works. Engaging rarely does. Most people hate to be ignored but those on the autism spectrum often take particular affront. It gets them going but it will eventually peter out. Trying to engage in a meaningful dialogue only prolongs the abuse.
Lesson Two:
Know your enemy. This goes to MTV News who assumed that this was not going to be a confrontational interaction. Neurodiversity advocates who are autistic can easily create the impression that anyone who is not autistic is the enemy. I do not believe this is true but a result of social communication styles. This goes to both the autism advocates and the autistic advocates, who really don’t understand how Autism Speaks will beat them every time using the same strategies…. ignore.
Lesson Three:
If it works keep doing it. If it doesn’t, then it is time to change. Social media has historically been a useful medium but it is limited. I believe it is no longer making autistics more visible and voices louder despite what they claim. Social media, particularly Twitter, has a half-life compared to recognized news sites. Twitter can be a powerful medium but only when it is picked up by main stream media.
Perhaps it is time for autistic advocates to recognize the limitations of social media – specifically Twitter and leverage mainstream to their own advantage.
Currently, neurodiversity advocates are only preaching to the choir. And for those of us who are trying very hard to listen, we find the monotone off key.
Editor’s Note:
This editorial was written on March 3rd of last week and held in the queue for publication today so as not to take away from last week’s series on Autism and Law Enforcement. Other than checking for grammar, no edits have occurred.
* LANGUAGE: I confess that I struggle with the terminology of neurodiversity related language and apologize for any errors. For this reason rather than branching out into unknown territory, I have chosen to use autistic neurodiversity advocates / activists to avoid as much misunderstanding as possible. I recognize that not all individuals who identify as nerodivergent are autistic. If the terminology confuses you as it does me, I recommend Nick Walker’s helpful blog post: Neurodiversity: Some Basic Terms & Definitions
Personal Note:
I am very conscious that I am a white of woman of privilege. There are many other descriptions of me and while I really don’t know “what I am”, I identify as neurotypical.
While as Editor-in-Chief of Autism Daily Newscast, I have been called rude, a bully and a liar. I have been compared to the KKK and accused of stealing other people’s work and copyright theft.
While Autism Daily Newscast and I have been criticized – sometimes strongly and sometimes respectfully – it is only the autistic advocates that have used such language. It has been libellous, mean spirited and spread purposefully on social media.
I have requested to reprint articles that include criticisms of Autism Daily Newscast because I believe that all voices have a right to be heard. We are told that “Autism Never Speaks Unless Autistic People are Talking” but we have not been given permission.
Autism Daily Newscast was created less than 2.5 years ago on a shoe string budget. Since then we have become the only only recognized Google News Site that has made a commitment to hear all the voices of those on the autism spectrum and those that love them. Our mandate is to present current events from an objective and neutral perspective as possible.
No one person works full time for Autism Daily Newscast and although we do pay some a pittance as a token of appreciation, it is a labour of love. Current advertising only scratches the surface of costs. And still we are able to accomplish remarkable things thanks to the commitment of our writers. I am very proud to be associated with my editors, staff and regular contributors.
Last month Autism Daily Newscast had almost 200,000 page views on our site and 80% were first time visitors. Do you realize what an opportunity this is for education, awareness and acceptance. We have invited and welcomed autistic neurodiversity advocates and activists to work with us, educate us and exploit a platform that will get their important messages heard. We will continue to provide this platform to those who wish to use it.
Here are what I hope will not be my final two questions to autistic neurodiversity activists and advocates:
Do you want me or Autism Daily Newscast to: Shut up, shut down and go away?
in other words,
Will you work with us or against us?
Comments are open.