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Stand With Whom?

  • Posted on January 14, 2011 at 6:17 PM

I recently read a post by Rachel Cohen-Rottenberg over at Journeys with Autism entitled “Autism Parents: It’s Time to Stand Up With Us.”  My reaction to this post was mixed.

Rachel starts off addressing a very specific issue, namely parent who make comments like:

How disappointed the person is to have an Autistic child

How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)

How altogether unfair it is not to get the child the person dreamed of

How getting an autism diagnosis is like finding out that someone has died

How autism is analogous to a fatal disease

Regular readers of this blog (and probably most irregular readers, as well) know I am not one of those parents.  I do not make those comments.  I believe those comments stem from parents focusing on themselves when they should be focused on their child.  Self-centered parents make for maladjusted kids, regardless of their diagnosis or lack thereof.  So, know that I am not defending these parents in any way.

Rachel goes on to ask:

Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours?

I’m totally on board with that.  Those questions—and the way she develops them—are important, worthwhile questions that stem from a very painful experience.  I get that.  I really do.

Then, Rachel turns this reflection around by asking: “What can we do to stop this from happening?”  Considering the title of her post, “Autism Parents: It’s Time to Stand Up With Us,” I think we can assume the conclusions she draws.

But—and this is where I obviously stray from total agreement—the trouble is it’s much, much more complicated than that.  See, the questions Rachel asks and the conclusion she draws creates the same line in the sand that those parents create. 

It’s us/them thinking.  And that is the problem.

The challenges autistics present to society and the challenges society presents to autistics are situational.  A great big part of this awful situation is us/them thinking.  The us/them thinking starts in the form of bigotry and misunderstanding, which leads in turn to us/them thinking in the form of autistics versus non-autistics. 

It’s not us versus them.  It’s all of us. 

You see, I am not neurotypical.  I do not identify as neurotypical.  But I’m not quite autistic either.  And, you know what, I’ve stopped going on certain autism blogs because of all the hate directed at me for not being one of them.  And I am one of those people Rachel hasn’t seen calling out to other parents of autistic kids and telling them they language they’re using is demeaning!  Yet, I’ve been hated off autism sites for not being autistic.  That’s us/them thinking.

Rachel cites many other social movements.  She states that it takes people on the inside and the outside of those groups to evoke the kind of social change that is necessary.  She’s right, but that doesn’t just happen.  And it doesn’t happen by saying “stand with us.”  It happens when the people involved—both the people within and the people outside the minority group—identify more with being people than they do with being inside or outside the minority group!

So, when Rachel says, “stand up with us,” the “us” should refer to fellow advocates.  Unfortunately, that doesn’t seem to be what she means.  Rachel ends her post: “So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.”

I’m sorry.  I don’t agree.  Our fate is inseparable.  No us, no them, and no yours.  You cannot unite by dividing.  You cannot join by categorizing.  You cannot call together by alienating.  The issues we all face are situational; it’s not them versus us or us versus them.

*takes a deep breath*

See, I prefer stories.  Stories can show, and showing can teach, and that just makes it all the more real, at least for me.  So, let me leap back a few years and show you what I mean.

Years ago, my children were in Early Childhood classes and the Birth to Three program (pre-school for children with special needs), because they had demonstrated developmental delays.  We didn’t know why, and nobody was very forthcoming with recommendations on where we could get additional help or *gasp* explanations.  As my husband and I saw it, our children were developmental delayed and we were working hard to address those delays; since no more help or information was forthcoming, we did the best we could with what little we had.

Then comes my sister-in-law’s wedding.  We were at a special dinner with “just the family,” which happened to include a lot of people, including people I’d met only at my own wedding and some others who I didn’t remember ever meeting at all.  The dinner was held in a long dining area at a local restaurant.  It was loud, dark, busy, chaotic, and smelly (not bad smells, just a lot of them).  I hadn’t figured out how to cope with these situations very well myself yet, so you can imagine it did not go over very well with my un-accommodated autistic toddlers.

*sigh*  I look back at times like that and I cringe.  I want to kick the self I was back then.  I want to scream at me, saying, “Can’t you see what this is doing to your kids!?!”

The truth is I saw, but I didn’t understand.  I rely very much on words to process information.  I can process ideas and feelings, but I rely on words to ground them in expressible reality.  I knew I needed to get out of there and that my kids needed to get out of there, but I couldn’t explain why we needed to get out there—not to myself and certainly not to my family.  So, I was stuck with the obligation of being there and keeping my kids there…until we were all thoroughly melted down and had an excuse—I mean, a justifiable reason—to leave.

So, I look back and I want to kick myself, but I also forgive myself for my ignorance.  I DID NOT KNOW.  I COULD NOT KNOW.  So, I rest assured I did the best I could, however poor my best happened to be at the time.

Anyway, the really momentous thing did not happen until after we left the room.  My mom, who was invited to help with the kids, and I took the boys out into the chilly, blissfully quiet outdoors, so my lovely children could scream their bloody heads off in peace.  Because, of course, they were past the point of consolation; they were thoroughly melted down. 

First, my mother in law came out, full of concern.  Then, my grandmother-in-law came out, full of concern.  After a little while with us, my grandmother-in-law took me aside, with someone else holding the fussy child, and said very softly, very gently: “Something’s wrong.  You need help.” 

Yes, I knew that on some level.  Yes, we’d tried and failed to get that help.  But this woman was the matriarch of my husband’s family, and had lived her life as a nurse to boot.  This woman had authority, and the soft, gentle way she said those words added more impact to the words than shouting could have done.

Now, I want you to think about what she said for a moment.


Okay, how ‘bout I put it this way:  She didn’t say “your kids are monsters and you need to get them fixed.”  Believe me, the way they were acting there are a lot of people who would have said something to that effect and they all seem to hang out in grocery stores.

“Something’s wrong.”  Not: “Something’s wrong with your kids” or “your kids are broken” or any of the number of insensitive, painful ways the subject is broached to many, many parents of children with autism.  “You need help.”  Not: “Take them to the doctor” or “can’t you give them a pill or something” or “you really need to teach your kids some manners” or the many other painful things parents of children with autism hear on a regular basis.

Those precious words—“Something’s wrong.  You need help.”—were the foundation for us.  We were very, very lucky to have that as our foundation.

I’m not saying all the good we’ve done for our children can be laid at my grandmother-in-law’s feet.  Mark and I certainly have done our parts, and the information we’ve gotten from many parents of autistic children and many autistics themselves has helped a great, great deal when it comes to us having done/continuing to do our part. 

But she gave us the foundation we needed to look at the situation as the problem.  Very, very lucky, for us and for our kids.

*another deep breath*

I agree with Rachel that it is intolerable that people with autism have grown up and continue to grow up believing they are some kind of tragedy.  That has to stop.  But, it’s not going to stop with us/them thinking.  It stops when we force ourselves to look at the situation as the problem, and how we—all of us who care about autistics—can address that problematic situation.

The problem is not the autistics.  The problem is not the parents of the autistics, who may or may not be neurotypical.  The problem is that we divide ourselves, because we believe we are fundamentally different.  We’re not.  We are fundamentally the same with individual differences that make each and every one of us special, worthwhile human beings.

We can stand together, as advocates and as emissaries.  But we cannot stand with you; we are you and you are us.  Some of us just haven’t figured that out yet.

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.