Monday, April 18, 2011

Why I Don't Display the Autism Ribbon

I am on Facebook, as is nearly everyone, and I use it to keep up with the lives of my friends.  Lately there have been a lot of Autism things coming forth, and I have been invited to click "this" for autism, or proudly display "that" for autism, but I have not chosen to do so.  It is, in part, due to a book I've recently read called "Empowered Autism Parenting: Celebrating and Defending your Child's Place in the World" by William Stillman, a brilliant author, autism advocate, and person with Asperger's.  I cannot recommend this book enough to everyone, whether or not they live with someone with autism.
Stillman tells us that when we proudly display the puzzle piece ribbon on our bumper, or advertise it elsewhere, that is setting the environment for people to segregate us and our children.  People see that ribbon on our bumper and think, "Oh, they're one of those families"  or, Oh, poor things, what saints they are to care for those diseased children.  And when your children emerge from the vehicle, the judgements are already being passed upon them.  In that manner, you aren't giving your child the chance to be considered "normal", you are already telling others what to think of them, and how to treat them.  And the scarey thing is, even with the rate babies are being born with autism, there are still so many people who don't understand what autism is.  When I tell someone that my child is autistic, I think they expect to catch him drooling in a corner, rocking himself and talking gibberish. 
The book also talks about those parents who print/hand out cards or announce that their child is autistic when they are reacting to the stimuli in crowded stores.  The person you hand that card to, as your child is tantruming or self-soothing in a way that may not be considered "normal" social behavior, is now thinking, this is what autism looks like.  It belittles your child, who is merely trying to communicate his/her level of discomfort with the sensory overstimulation.
It also taught me that my child's "behaviors" should not be dismissed as that, but as communication.  Most autistic children have needs that they can't put into words, so they use action to try and communicate.  This really hit home with me.  My older son is high functioning, and is quite bright.  In first grade, he was testing at two grade levels ahead in reading and math, and eight grade levels ahead in visual spatial relationships (common for kids on the spectrum).  He is very bright, and has always been very verbal, so I have always assumed that he knew how to express his needs/wants/discomforts, but now I see things so much clearer.  He has an appointment to assess him for ADHD next month, but now I am wondering if his "disruptive behaviors" aren't really just his attempt to communicate something that his brain/mouth won't let out.  It will be interesting to see what the outcome is.  Since reading the book, our relationship has been much improved, and I have appologized for doing things wrong in the past, and asked him to write down anything I've done that bothered/bothers him so that I can work to help him instead of bother him.
As for my younger son, I have begun to show him more respect by asking him if it's OK to touch him before I do it, and to my surprise, even though he usually never complains about my touch, a lot of times he says no when I ask him if it's OK to rub his back or arm, which I have been doing without permission nearly every time he is near enough to touch.  There are places he likes to be touched/kissed and I am working on just touching him there, but only with permission.  It is about respecting them, and as Stillman puts it, assuming intelligence.  Our children want what everyone else wants, to be treated with respect and dignity.  And that is why I do not proudly display the autism ribbon.

4 comments:

  1. I can "See," your point...&, it's your choice. *Others' do it; only, to show their <3/support. &, just to make others more "aware," of Autism. *Your boys, are a "wonderful/shining" example...of 2 boys, that need <3...as well as, give it. 0:) *Everyone, gets..."looked at/judged," by others', for BOTH "viewed"(appearance) parenting; &, the ways in which your child(ren) "behave." (Good, OR Bad) *We all, just...do our "BEST." :)

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  2. *When, I 'may' send you things; it's only for..."help"/information. 0;) <3

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  3. *Take it, from someone who "knows"...people can be "uncomfortable/not know 'how' to handle a situation," if they haven't been around it/"informed." Hence, "Never 'judge' a book, by it's cover..." 0;) <3

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  4. This is part of the problem when a member of society is "different." In that term, I mean anything out of typical norms. I have come to find that parents of children with Autism cannot be pleased. When your child isn't recognized for the difficulties they have, there are complaints saying they aren't being given a chance. When they are given opportunities that other children don't get, they are being singled out. Its a no win situation for everyone involved.

    To say displaying a ribbon for autism leads to segregation MIGHT be the dumbest thing I've ever heard. Its at least the stupidest thing I've seen today. Saying you support Autism doesnt mean you have it, your children have it or your friend has it. It means you support people being aware of Autism and empowering others to look into information to increase their own level of awareness. Say this statement to yourself out loud, because its essentially what that author is trying to say "I will not display a ribbon supporting Autism awareness because I dont want anyone to know my children have autism." That sounds like you are embarrassed of your children or ashamed of their disorder.

    Maybe you need to display a ribbon, not only to make others aware, but to prevent you from forgetting...

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