Offending Autism Speaks

  • Posted on October 26, 2010 at 2:16 AM

Okay, so I didn’t intend to take a break from my bullying series until I’d finished with it.  But, I think this is worth it.

For those who don’t know, I am a professional writer—a professional writer at the beginning of my career, but a professional writer nonetheless.  I write full-time.  I make money.  I have been professionally published.  I’m writing two novels and a non-fiction book, along with many other shorter projects.  I market my skills to local businesses (and sometimes not-so-local businesses) and I get paid well for my work.

My point is that I have many interests.  One of the interests I’m resurrecting, after years of studying business, is my fiction.  I’ve neglected my fiction sorely over the last decade of child-bearing, autism-diagnosing, and degree-getting.  Now it’s time for that passion to be re-born.

While I make some effort to keep my variety of interests separate, there is some overlap.  The main character of one of my novels is rather Aspie-ish.  (Though, I’m not going to call her an Aspie—if, for no other reason, then because she’s a fairy.)  My other novel, which is being co-written by a friend of mine, has strong “outsider” themes.  My non-fiction book melds my interests in autism and business and confronts one point where those interests overlap.

Then, there are other, less pleasant, intersections.

I receive many newsletters for writers, including Writing World.  I scan the articles and choose which ones I’ll read in detail.  One I chose to read in detail was about dark fiction markets, written by C. M. Saunders.  This article recommended The Dark Fiction Spotlight as a token-paying market that publishes dark fiction.  So, I checked it out.  As I was scanning pages on the website I found a sub-tab called “Anthology for Autism.” 

Hmm, I thought.  Now, that could be cool!  I have an idea of for a short story that is both dark, science fiction and involving an autistic main character.  The story isn’t written; it’s one of many projects that has been postponed due to time-constraints.  But, I figured if there’s actually a market for it…

So, I started reading about this anthology, and it starts with:

About Autism Speaks:

Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we’ve been able to accomplish and look forward to continued successes in the years ahead.

Oh, dear.  It didn’t look quite so promising any more.  But, I kept reading.  Maybe they’re open-minded.  But, then…

I repeat:

Anything that will offend Autism Speaks will offend me and will not be considered.

Honestly, my story would definitely offend Autism Speaks.  And, frankly, I wouldn’t have it any other way.  I remember trying to interview someone at Autism Speaks once.  It didn’t go well.  It wasn’t even an advocacy piece, but that didn’t matter.  Even a piece designed to inform parents of their information options offended the Autism Speaks representative I spoke with.  They were only willing to participate if they had full control over what I wrote, which is an ethical no-no in the journalism world.

So, I took a break from my bullying series to warn my fellow speculative fiction writers and autism advocates that The Dark Fiction Spotlight or Lady Luck Publishing might not be publishers you want to patronize or write for.  As much as I hate to write off potential markets, I won’t be pursuing any opportunities with them.

* * *

For those who read this blog and don’t already know, this last part provides reasons why such an affiliation with Autism Speaks requires me to boycott this company and it’s zines.

In a sense, all of this is about bullying. 

Autism Speaks claims they exist to advocate for families with autism, but only 4% of the donations goes to those families.  They fund research, and one of their major projects seeks a way to diagnose autism in utero, which is a form of eugenics.

That is why I disagree with Autism Speaks’ agenda.  But that, in and of itself, does not warrant boycotting (though it is why I would not donate to their organization).

Autism Speaks goes even further than this.  Autism Speaks is an organization that intentionally spreads fear and despair.  They use advertisements that amount to hate speech against autistics.  They encourage parents to fantasize on camera about killing their autistic children, and use this as a reason why autistics should be eliminated from society.

They use “Autism Speaks” as their name to claim that they speak for autistics; they don’t.  Autistics can and do speak for themselves, like these protesters.  On the site for the anthology, there’s this branding slogan: “Autism Speaks. It’s time to listen.”  Autistics, in return, says: “Autism Speaks needs to listen.”  Instead, Autism Speaks actively tries to silence those not in agreement with their eugenics agenda.

If this wasn’t bad enough, they engage in unethical business practices.  They mislead donors as they raise funds for their research.  They try to control media elements, as they did when I tried to interview one of their representatives.  And they bully their way through politics and the social landscape.  Their message is clear:  If you don’t feel bad (or even homicidal) about having an autistic child, then there’s something wrong with you, because autism has stolen your child’s soul.  (Yes, the soul-stealing is paraphrased, but with their very words one of their representatives has used.)

As an organization, Autism Speaks is a bully—a well-funded, politically powerful bully that believes that eugenics is the solution to autism.  And that offends me.  They use their size and their wealth to attempt to stomp out disagreement.

And they create anthologies where one point of view is all that can be expressed, because they don’t want their audience to become aware of differing points of view.

That offends me.  Autism Speaks offends me.  As a business person who believes in ethical business practices and as a parent of three children with diagnoses of autism, Autism Speaks offends me.  And I cannot write honestly and not offend them in turn.

I wouldn’t change that even if I could.

16 Comments on Offending Autism Speaks

  1. Clay says:

    Yes, all of that, and with the money they’ve raised with their walks, they get big-named celebrities to endorse their agenda. Folks like Paul Simon and Jerry Seinfeld have been taken in by their propaganda, and are used as a draw to – raise more money!

  2. codeman38 says:

    Excellent post. I just posted a link to this on my blog, because I think it lays out the issues with That Organization even better and even more succinctly than I’ve done!

  3. I am 65. Up until recently I had no clue I was an Aspie. Once I began to explore, my neuro-atypicalness was quite apparent. I began to read the Asperger community on Live Journal. There seemed to be a universal consensus that Autism Speaks was very much hated in that community. Over time I began to realize why.

    Your essay really hits the nail on the head! Many thanks!

  4. Kai says:

    This is amazing. The only point I can sort of agree with for AS is being able to detect the presence of Autism in utero. Unfortunately, with that we need to enact laws about aborting just because your child could be on the spectrum. (Because non of the current tests are perfect, so why would a new one be?) I say this as someone who just wants to be able to get the right environment set up for my child no matter what. And if I know that my child is autistic from the get go, that can help me plan on things like schooling, and possibly extra help around the house. And all of that requires budgeting. But as someone on the spectrum who has thrived in a world of bigotry and low expectations? I wouldn’t want AS to be the ones behind this test, because I know what it’ll lead to.
    That was really convoluted. I hope it made sense!
    –Kai

  5. Offending Autism Speaks : Embracing Chaos…

    Here at World Spinner we are debating the same thing……

  6. Stephanie says:

    Wow, thank you all! I have to admit I’m a bit surprised at the amount of attention this post is getting. Thank you all for your support!

    Kai,

    I would agree that if prenatal testing were used as a way to prepare parents for the baby to come then prenatal testing would be an ethical practice. Unfortunately, that is not how prenatal testing is practiced in the US (I’m not sure about other countries). I’ve heard from many parents who’d wished they’d never got testing done, because they were pressured throughout their pregnancy to abort their “imperfect” child. It wasn’t autism, of course, because that test does not (to my knowledge) exist yet. But pressure put on parents to abort “defective” fetuses can be enormous. As long as that pressure exists, it will remain my opinion that prenatal testing is eugenics in action.

  7. I saw trhis cartoon and thought you would appreciate it.

    http://www.pixton.com/comic/atbpplm2

  8. Stephanie says:

    Alobar,

    It’s cute. Definitely skilled!

    As far as appreciating it goes…it seems like a celebration of unethical business practices to me, but it certainly makes a point.

  9. Sunday says:

    I could not agree more with everything you wrote here.

  10. Stephanie says:

    Hello, Sunday! Thanks for stopping by!

  11. […] Offending Autism Speaks : Embracing Chaos […]

  12. Hello all,

    I stumbled upon this blog by chance and it pains me that this is the image you’ve gained of myself, my associations and my magazine, The Dark Fiction Spotlight.

    I wish to tell you about the autism anthology that will never be.

    I was contacted by an acquaintance to edit a project for charity and I was told I’d know more as it all came together. After some time, it was presented to me that it would be of autism. I, like you, for many reasons became interested. I was told it would be for AutismSpeaks, which to me was nothing other than a major charity to my knowledge.

    This project did once mean a lot to me, as both of my sister’s boys were born with autism and I help to care for them daily.

    Once advertised, many came to me about the politics of AutismSpeaks and I ultimately pulled out of the project for “creative differences”

    I do intend to do a proper book for autism funding sometime, but I’m doing my research first.

    Judge me if you will for this project, but know that I was acting as an illinformed, but caring family member. I even aimed to turn my nephews’ likeness into cover art for it all.

    NOTE* This project is long dead and if it’s still on the magazine site, it remains solely as an oversight.

    NOTE* I love this blog and enjoy reading such with similar experiences to my day-to-day.

    Take care, happy holidays and many blessings.

    Stephen

  13. Stephanie says:

    Stephen,

    This change is duly noted and will require another blog post to address the issue.

  14. […] October 26, 2010, I wrote a scathing post about The Dark Fiction Spotlight for hosting an autism anthology that stated in the guidelines, […]

  15. Stephanie says:

    Jeanne,

    For a teenager, I would recommend checking out some psychologists in your area. Try to find one that is familiar with autism, so that they have some experience to go by. Another place to go would be developmental clinics, which are usually associated with children’s hospitals. You can call around to see if your community has any support services–even if you nephew doesn’t qualify, they’ll be able to refer you to a qualified diagnostician and help you get started in the process.

    Because the services available, including diagnostics, vary dramatically from community to community, it’s difficult to direct you without knowing what community you’re from and being familiar with the resources in that community. Like many things, the autism journey starts local.

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