Tag Archives: silence

Silencing Ourselves- A Plea for Civility in the ASD Community

Poking around the autism blogosphere last night, I came across some commentary that unsettled me.

In one thread, a mother of a young autistic boy, asked  if anyone knew of a DAN doctor near her city who didn’t have a long waiting list.  It was a simple and direct question, not inviting a debate or attack upon her online person.  But this unfortunate visitor had popped into the wrong thread.  She was immediately attacked for even thinking about trying a biomedical approach to helping her child.  Phrases along the lines of “b****hslap Jenny McCarthy”, “autism cult”, “inflict that upon your child”, “stupid”, etc. began flying.   I felt sorry for that mother.  She probably, like many of us, is desperate to try anything to help her child.  The fact that she was even on the internet looking into options for him shows her love.  Sorry parents simply aren’t in these forums, blogs, and social networking groups.  They’re too busy neglecting their children.

On the flip side, I’ve seen parents who make mention of their child refusing to eat anything but bread get trounced by biomedical devotees condemning them for not being willing to “cure” their child by trying a controversial treatment.  The implication being that one day when that parent is “willing” to help their child, they will look into it.  How unconscionably cruel.

I have seen parents marveling at their children’s progress since beginning ABA therapy, only to see them attacked for “inflicting” a therapy that amounts to little more than “dog training”.  Is it so difficult to imagine that some therapies are beneficial to some but not others?

I, along with others, have been chided for using the word “autistic” instead of using “people first language”.  As though parents who use the word “autistic” don’t put their children first.

I have seen parents and teachers denounced for not wanting to implement full-inclusion for their autistic children.  For me, that’s a choice about what is best for the child.

And, most recently, the “neurodiversity” movement has been blasting well-intentioned parents.  Please do not misunderstand me.  I’m a teacher.  I’m all for appreciating the diversity of children and promoting acceptance.  I like some of the positive things that the concept of neurodiversity can bring about.

But neurodiversity, in my opinion, does not have to preclude parents wanting to help their children fit in a bit better in a complicated world.  Recently, I’ve come across many threads of angry people in our community insisting that parents of autistic children be happy about the challenges facing their children.  It seems there is great pressure these days to deny the difficulties, disappointments, fears, and sadness associated with the loss of a typical childhood.   Parents feeling sadness and worry are encouraged to deny there is any grief associated with it whatsoever.  Told to buy perky t-shirts and snarky bumper stickers.   Some of the commentary associated with such discussions barely stops short of suggesting these people don’t really love their children for who they are.

And after months and years of reading such attacks disguised as “commentary” and “debate”, it has occurred to me that we are spending a great deal of our time teaching people that it is in their best interest to shut up.

After all, while many of us are confident in being vocal, I would  guess that the vast majority of people in our community are simply everyday people.  People who have no desire to control the parenting decisions of others.  People who do not purport to know definitively who is right in any of our controversies.  People who are simply trying to do what their instincts say is right regarding their own children.  And, like most folks, these everyday non-blog espousing parents have no desire to ignite a debate or have their emotions stomped into the ground.  Sheesh.  Parenting and advocating for a special needs child is hard enough without putting yourself out there like that.

So I find myself wondering why we, by attacking people whose approach to therapy and educational decisions for their children is different from our own, think we are somehow furthering the cause of autism?  A well-intentioned “Hey, you might want to check out this article that has some interesting things to say about blah blah blah” would be more beneficial, I think.  I know I’d be much more willing to hear another viewpoint expressed that way.

For, by jumping people for their thoughts and decisions about raising their autistic kids, all we are doing is silencing them.  We are discouraging them from sharing any more.  And we are teaching those not willing to endure the same attack that they should go someplace else.  Silencing their voices.  Problem is, I can think of a lot of disturbing examples throughout history when silence was encouraged of dissenters.  None of that turned out so well.

I worry about the degree of politically correct autism discussion pushed on us these days.  You can hardly turn around without offending someone in the ASD community.  I worry about the parents who feel ashamed for considering or trying a therapy that others don’t agree with.  Saying that you have concerns about an approach is one thing.  Suggesting that they are abusing or not loving their children is another.  I worry about those parents who might be afraid to express their genuine grief out of fear of not “embracing neurodiversity”.  I worry about the silence that will follow.  I want to hear all of our voices.  Because, if we already knew all of the answers, we wouldn’t need these discussions to begin with.

In the discouragement of telling the truth about our experiences,  I wonder if autism will be granted even greater powers of silence than it already has.

For autism has already silenced too many of our sons and daughters, brothers and sisters.

We must stop silencing each other.

If you liked this post, you might enjoy:

“This is MY Reality” by Sunday Stillwell.

 “Stirring Up a Hornet’s Nest:  Free Advice and the Vaccine Controversy” or “Reply to a Disgruntled Reader“.  

Or you might like (language alert!) this post by Jillsmo:  “Autism and Vaccines: My Opinion”.

Or even this post by From the Inside Looking In:  “Anti-That-Kind-of-Parent”.