Advice to Change.org On Hiring an Autism Editor/Blogger

I saw Josh Levy's note at a number of spots around the web, including Whitterer on Autism.

Levy's the editor in chief of Change.org, which is a social-networking site.

Today as citizens of the world, we face a daunting array of social and environmental problems ranging from health care and education to global warming and economic inequality. For each of these issues, whether local or global in scope, there are millions of people who care passionately about working for change but lack the information and opportunities necessary to translate their interest into effective action.

Change.org aims to address this need by serving as the central platform informing and empowering movements for social change around the most important issues of our time.

They are planning to launch a blog on autism, as one of the featured issues.  Below the fold, what I sent to Levy.

I've read of your plan to start an autism blog here at Change.org at a number of places.

While I am an ardent blogger (http://lizditz.typepad.com) and I do cover autism issues,  I'm not volunteering for the job for two reasons: One, I think your blogger should be a person with autism, and I'm not a person with autism; Two; in the current episode, I don't have the time.

I want to pass on a words of friendly advice, though. Be very, very careful who you chose to be your autism editor.   

Autism can be viewed through many lenses, some reality-based, some not.  Among the non-reality-based lenses, or tribes,  is the notion that autism is caused by vaccination or environmental toxins.  The people in this tribe do not themselves have autism, but may have a child with autism.  They refer to their children as "vaccine damaged" or "vaccine injured".    Personally, I suspect this tribe is small, but they are vocal and have significant visibility, in part because they include some wealthy individuals and because they have attracted celebrities such as Jenny McCarthy and Robert Kennedy jr. to their belief system.

They are ardent and vocal and will lobby hard for the job.  This morning, one of the leading vaccine=autism web presences, Age of Autism, posted the job announcement, together with all of your contact information.

If you select an editor from the vaccine=autism tribe, your selection will destroy Change.org's credibility.

The vaccine-autism connection has been thoroughly debunked.  Fourteen plus studies have not found any correlation between autism and vaccination.  Yet these true believers continue to write and demonstrate their belief that there is too a connection, and the government is covering it up.

(If you would like a closer look at the vaccine-autism claims and their falsity, I can recommend two books published this fall: Paul Offit, MD: Autism's False Prophets (http://cup.columbia.edu/book/978-0-231-14636-4/autisms-false-prophets) and Michael Fitzpatrick, MD: Defeating Autism: A Damaging Delusion (http://www.routledgementalhealth.com/9780415449809).  Dr. Offit focuses on the vaccine-autism mania in the US, while Dr. Fitzpatrick's book is on vaccine-autism mania the UK. 

There's no room for "balanced reporting" -- any more than there's room for "balanced reporting" on the theory that the Holocaust didn't happen, or the earth is flat. The editor you choose must have the education and the strength of mind to stay based in science and reality.

Pick someone who can understand scientific writing, especially in neuroscience, epidemiology, and genetics, which is where the real work in the etiology of autism takes place.  There's a tremendous amount of pseudoscience in the world of autism.  Pick someone who can sort out false claims for efficacy of a given treatment. 

You might also look around the existing on-line world of autism.  I'd recommend two sites to start:

The Autism Hub  http://www.autism-hub.co.uk/

The Autism Hangout http://www.autismhangout.com/default.asp

Comments

[Bryan Vartabedian]

Remarkably well put

[Niksmom]

Thanks for this, Liz. There are some Hub bloggers that have applied; there's also a very active discussion about this on our discussion board.

[Special Needs Mama]

Terrific post. Thank you.

[isles]

I'm so glad you sent this. I hope they'll listen.