A Reason To Get Riled Up

I will admit.  I’ve shied away from the Autism community of late.  One controversy after another.  Division.  Name calling on all sides.  An unwillingness to see a situation from another’s view.  More name calling.  Some serious name calling.  Accusations of this or that leading to even more name calling.

Who needs this, right?  I came into this world as many parents do.  My kid got a dx and I had questions and thoughts.  I had family and friends who didn’t understand, and I wanted to make a world in which they, and others felt more comfortable asking the questions they weren’t sure they could ask.

I wanted to create a place where parents also new to the dx would have a safe place to ask questions or ust share a frustration or two.

And i tried to bring it all with my brand  of humor to let people know that our lives were NOT, in fact, anything resembling a tragedy.

And as my kid grew, so did awareness. And then there weren’t as many questions.  And there were more prolific bloggers with much larger followings answering those questions, being much funnier, and I felt like my ramblings were just preaching to the choir, or that my humor was just hackneyed and stale, and with the exception of an occasional diatribe, I pretty much bowed out.  And no one missed me.  And I was genuinely ok with that.  The market was saturated with well honed voices with whom I was in harmony.  They were fighting the good fight and I was/am happy supporting them.

Because honestly my fight had changed a little. I was now focused on two things:  making sure I was

  • a) raising a kid who was well-mannered and caring, while still being himself, and
  • b)helping others understand kids like him to fight the horrid bullying statistics that haunt me every day.

So I continued to teach my son about being a gentleman, and how to tell knock knock jokes, and I make an effort to talk to other parents in his class, and anyone else who will listen, about how he is just another kid, albeit quirky, and wouldn’t your kid benefit from knowing such a handsome guy?  Ok—maybe I don’t sell him so hard, but I make an effort to show he is fantastic kid, worthy of play-dates and good times.  Ignorance breeds contempt—so I educate, educate educate.    This is what I consider my job as advocate to be for him at this age. (besides getting the services he is allowed by law, etc)

And with this new focus, all the autism issues that get folks riled up kinda just fell by the wayside.  And I left others more willing to jump into the fray to get involved and make their arguments.  I embraced the old Polish Proverb “Not my circus.  Not my monkeys”

And then in the last week or so, the media has really gotten under my skin.  And I needed to stop and examine what was bugging me.  What it was that was getting me all riled up:

  • Why did I give a shit what PETA was doing, portraying Autism publicly with pseudoscience and a very visual image of a sad face?  They’re PETA for chrissakes.  Of COURSE they were gonna do something stupid, garnering lots of media attention.  That is their fucking business model.
  • Why was i surprised at the Washington post and their click bait sensationalist headline linking autism and mass murder—when that very article points out that all the evidence was anecdotal and weak.  Of COURSE they would sensationalize it.  Print is dying—they need publicity. The ethics of journalism is hardly something we recognize anymore.
  • Why did my anxiety shoot up when, in the light of ANOTHER horrible gun-violent tragedy, a lawyer who knew the perpetrator HAD to point out the shooter had Aspergers, among a host of other issues, that really had no real link to the actual violence he perpetrated.  OF COURSE he did.  His job was to offer excuses to a society demanding answers to something that makes no rational sense.


So, why am I riled up NOW?  When I understand why each of these stupid things happened.  Not excusing them in any way, but cynically understanding how fucked up we’ve become that these things just seem to make sense in their own perverse way?

It’s simple:  because they get in the way of my new focus.  Not the raising of a cool kid part—but the helping others UNDERSTAND him part.

My hubs and I—we worry about how Ben will be treated.  we worry about other kids being mean, to the point that we’ve already discussed HOW we will deal with it when it occurs.  Which says a lot that we just assume it will happen. So when the media steps out and starts portraying Autism in this horrid light, as something to pity, as something to FEAR, it makes my job as advocate harder.  Because even if people see this stuff and think—eh, it’s JUST the media being the media—it plants that tiny seed of doubt.  It puts in the back of their mind links between autism and violence, even though people with autism are more likely to be victims of violence instead of perpetrators.  It might make them wonder in a quiet moment about whether or not my son is a worthy friend to have for their child. And with all those seeds,  it wraps him in up in a much larger, more visual label of OTHER.  Which honestly scares the bejeesus outta me—because as a historian, I am KEENLY aware of how easily a society can write off an “OTHER” without batting an eye.

So yeah, you might see a few more shares from me about issues that you think aren’t important.  That I’m just being “butthurt” about some other stupid thing that doesn’t really affect your world, and even think that I’d be happier if I’d just let this shit go.  But I can’t continue to let it go and hope that it will right itself in time.  I can’t continue to ignore the fact that society is being shaped and guided by a media that thinks nothing of creating links between events that do nothing but damage my son’s chances.  Because the fight I fight?  it isn’t FOR me.  It’s for that very cool kid with a heart as big as anything who is just as worthy of a fair chance as anyone else’s lil snowflake.  And even if you think i’m shouting at the wind, at least the wind can hear me. And maybe others will too.

Categories: Autism, parenting | 6 Comments

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6 thoughts on “A Reason To Get Riled Up

  1. Reblogged this on OperationHaveItAll and commented:
    I write about our life, which includes a beautiful boy with an extra chromosome. But the more we become immersed in the secret, special, awesome club that comprises families and people with differences, the more I realize how much more I need to write about the A word. Autism is nothing to be afraid of… autism can mean so many beautiful things. It’s a difference. We all have differences.

    This mom rightfully reams the media who are so irresponsibly demonizing the A word. ENOUGH.

  2. This post really resonated with me. I too tend to see things through a “social history” lens and while I was reading a full account of the latest tragedy for the first time and saw the words ‘he had Autism’ I literally sunk in my chair. I couldn’t read any more of it. All I could think was how those few words would be all people heard. Thanks for writing this !

  3. Sandy

    In the specific case of the Santa Barbara shooter, autism ONLY came into the picture because the alleged shooter’s parents issued a press release starting (among other things) that their son had been diagnosed with Asperger’s — the media didn’t “create” a (non-existent) link between autism and violence.

    The media’s been fairly responsible, clearly staring that people with autism are much more likely to be victims than perpetrators of violence. Heck, even the New Yorker interview with Peter Lanza (Adam Lanza’s father) clearly said there’s no link between violence and autism, citing tons of peer-reviewed scientific research supporting that fact. If that’s not responsible journalism, I don’t know what is.

    There’s a huge difference between the media reporting that autism *causes* violence and the media reporting that a person who allegedly committed a horrifically violent act happens to have been (or allegedly was) diagnosed with autism at some point.

    In the specific case of the Santa Barbara shooter, what do you expect the media to do? Ignore the press release? Not report relevant facts?

    In the case of the WaPo article, the body of it was appropriately caveated — only the headline was inflammatory. And was probably written by an editor (not the journalist who wrote the article). What do you want the media to do? Ignore any study that doesn’t align with your views?

  4. Thank you for this, which so eloquently states what has been in my head and heart. Everything, from the nastiness of the Autism community towards each other to the devastatingly personally painful results of people and entities focused only on trying to make money, without regard to their impact. Very well done.

  5. My son went thru a lot of teasing but what was really great is I noticed right away that it just rolled off his back because most Asperger’s have a social deficit and he does not give a second thought to what others think and not do I. I actually reposted your article on Facebook when I first read it. My son is 21 and in his third year of college so we are pretty much past those issues as he has become the bmoc at the college. He has a handful of friends his age but prefers adults stimulation conversations more. Go figure…anyway I did not care for the way they handled the article either but I’m not surprised about the way the media will attack anyone to get a rise out of their audience. I would love for you to read Kids on the Spectrum a Chicken Soup book if you haven’t already. I met a lot of families by emailing them after reading the book. Great way to share experiences and make new friends with similar issues. Hope you will keep in touch. You’re welcome to friend request me if you like. God bless you and your family for caring so much.

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