The Limits of Awareness Ribbons


Awareness ribbons serve a good purpose.
  There's a couple months a year that the world is blanketed in pink.  Everyone, it seems, knows what a pink ribbon means.  (Though sometimes i cynically wonder if that's so popular with the ad business because they can acceptably draw attention breasts.)
  Someone once gave me a pin for women's heart disease. Because she did, i know more about this than i did.  (The above link has a funny short movie on this serious subject, and this one shares  the top 5 signs of women's heart disease.)

  Back after Max escaped, i asked our city councilman for help getting a sign of some sort outside our house to help drivers be aware of our wonder-full, unpredictable kid.  The DOT(?) person, the who spokesman who called me said it could say whatever i wanted & there was no charge to us.
  This was the mid1990s.  My thinking was that autism was practically unknown then - ribbons and other things have changed that - so i really didn't want the sign to say "Autistic Child Playing."
  So i asked for a "truthful lie" type of sign.
  i asked for the sign to say "Deaf Child."
  Because everyone knows how to react to a deaf child.  His behavior & responses could be very like a deaf child's responses.  but, in the 1990s, i figured someone might hit Max while they were distracted, wondering what autism was.
  Not that it's come up.  As far as i know.  And i don't know whether i was right or not.  But i guess even i have a bit of the Mother Bear instinct in me.

  But back to the limits of the ribbons.
  Lots of people now know that autism is out there.  When Max was diagnosed, we were told something like one kid in 1000 was diagnosed with autism every year.  These days, the number is more like 1 in 100.  i hear more different statistics now than i did then, but there're all in that range, and the then/now difference is that great.

  But what a ribbon cannot convey is the inside view.

  Most people these days have some sort of brush with cancer, their own or sitting with a loved one.  Cancer treatments, while individualized, run basically the same course.  And, while living with cancer is not a time-limited thing, the treatments, the Big Life Interuption, are relatively short-term.

  i'm not minimizing any of that.

  However, you see a cancer ribbon, and you get the gist.
  You see an autism awareness ribbon, and you know. . . .what?

Unless you have it in your own little family, what you know is there's something called autism out there.

  Autism itself is so different that saying this kid and that kid have autism is like saying they have, not BLUE eyes, but EYES.
  Somehow people with autism are the same as everybody else while being entirely different.
  And it's not just kids.  Despite Autism Speaks wanting to cure it, you don't cure or outgrow it.   You learn to cope, like many other things.
  i do not know what Max is experiencing.  i, his mom, can share what i see.  i can pass on to you the views of people like Natalie, who is about his age and speaks from her own experience.  But her experience is different than Max's.  Aside from the gender thing. Natalie is very articulate.  If Max matches his Thomas the Tank Engine title to something that  that's going on, we can rejoice.
  Obviously there's more different in their experiences, but they won't be able to compare notes.

  Here, i will share with you from our experiences, more carefully no doubt than if we were side by side, but allow you a glimpse of our world.
  A deeper bit of awareness.

No comments:

Post a Comment

i look forward to your comments! Thank you for sharing them.