So, I recently wrote a mini-article elsewhere (now available here: https://restlesshands42.wordpress.com/). I wrote the piece partly as a tongue-in-cheek parody of all the advice given about managing behavior in special needs kids… but I’m glad to see it being taken seriously as well.
The internet is full of information in the “autism community” (which consists almost exclusively of parents and professionals discussing autistic children) about how to “help” those of us who function differently, and how to love us unconditionally despite our flaws, and how to be “aware” of us, and especially how to change our behavior– kindly, lovingly, and with the best intentions.
But I see all this from the perspective of those standing in that spotlight (although I myself was lucky enough to grow up with a mother who believed wholeheartedly in letting me be myself and fought to put me in small private schools and other situations where I could function my best). And it’s an uncomfortable light to stand in.
When parents trade tips across the web on “managing challenging behaviors” in their kids on the spectrum, the AUTISTIC community (that is, autistic adults and young adults, and far more autistic children than neurotypicals realize are paying attention) sees a world that wants to fix us and make us into something other than who we are. We ask why we are always the ones who need to change. Why is foot-tapping (a common neurotypical stim) socially acceptable while rocking (a common autistic stim) is not? Why do parents and educators focus constantly on our differences and deficits rather than our strengths and joys? Why are we always the problem to be fixed, the burden to be endured, the puzzle to be solved, the ones who are “hard to love”?
Again and again, we press back. Echoing Amanda Baggs “In My Language” video (http://www.youtube.com/watch?v=JnylM1hI2jc) Julia Bascom writes “until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me” (http://juststimming.wordpress.com/2011/10/05/quiet-hands/). I wrote this article to remind neurotypicals to make that effort to move 3% of the way towards our world, towards our ways of thinking and communicating and interacting.
I also hope it will make them more aware that it is hard to do things in an unfamiliar way, to maintain constant awareness of your posture and words and how much noise you make. That it is frustrating and embarrassing to see yourself spoken of in clinical terms, to have your actions and interests dissected and discussed by all and sundry, to be singled out and put on display for simply going about your daily lives, pathologized for your personal quirks, medicated for your attempts to express yourself, misunderstood frequently, and constantly, constantly corrected.
And I wrote this for people on the spectrum, to remind them that they are not always in the wrong, that their needs are valid and should be respected, that it’s ok for them to feel confused and burdened and conflicted about their loved ones as well.
And I wrote it for all of us, to remind us that “normal” is not some objective gold standard that we should all struggle to achieve, but all too often a form of tyranny by the majority, and that creating a more equitable society requires that we take multiple perspectives into account when we decide what our gold standards should be. I wrote it to remind people that good intentions are not enough, and that just because something works for you doesn’t mean it will work for me. Being more “normal” would not make me a happier person, and if you try to force me to be more like you, it’s only going to hurt us both. So let’s learn to respect and accommodate each others’ needs. Let’s remember to make the efforts and the changes more mutual. And just maybe, we can build a world that isn’t so very frustrating for us disabled and neurodiverse folks to live in.