I’m having “a morning.” You know, the kind where, despite how organized you are, despite how well you laid everything out the night before, everything seems to work against you. So rather than go on a rant, enumerating all the things that have managed to go “wrong” in the last three hours, I’m going to reflect on Emma. Because Emma is a very, very happy little girl. In fact, unless Emma has gotten into a perseverative loop about going to the zoo or someplace that she has become fixated on and feels she cannot do without, she is in a state of bliss. It is the sort of blissful state achieved by gurus, yogis or LSD, or so I’m told. Yet Emma comes to this place naturally. She does not have a “practice,” she does not sit cross-legged staring at a fixed point for an hour each day, she does not meditate, feeling euphoric if she managed to pause the endless chatter in her head for even a few seconds, no, Emma is full of joy almost constantly.
Today is Autism “Awareness” day. It is a day that was intended, and no doubt with the best of intentions, to bring much needed awareness to the larger community. Yet, instead it has become a day that many of us dread. Instead of bringing awareness about what it means to be autistic, we are bombarded with frightening statistics. Statistics that many will read and then, feeling helpless, will turn the page. I’m all for awareness, but let’s then be aware. Let’s be aware that our society does not embrace those with disabilities. Let’s acknowledge that our school systems are failing our autistic children. Let’s look at our government and exactly what is being done to help those who are autistic. Let’s take a good hard look at autism. Let’s look at the prejudices, the bullying, the marginalization of people on the spectrum. Let’s take a good hard look at ourselves. Are we assuming incompetence when confronted with someone who makes grunting noises, whose speech is garbled, who flaps their hands, or doesn’t look us in the eye? When someone cannot speak do you assume they have nothing to say? When you see someone, on the airplane, in the playground, sitting next to you on the bus or subway, who is acting differently, do you move away? Do you feel irritation? Do you feel annoyed? Do you feel impatient and wish you’d gotten onto a different car or bus? Awareness begins with each of us. Awareness is more than lighting something up a given color. Awareness begins with being open. Awareness means stopping and examining our beliefs. Awareness means asking questions. Awareness begins with each of us.
It’s a great word.
Let’s not allow it to become meaningless.
For more on Emma’s journey and ours through a childhood of autism, go to: Emma’s Hope Book
Yes. This spoke to me loud and clear, Ariane. I wish it could be printed on the front page of the NY Times today.
What about the fear of those on the spectrum who have spectacular gifts to offer but haven’t been “diagnosed” and therefore might view themselves as damaged failures, beat themselves up for not being good enough, and their voices become gradually silenced?
Many of us are mono-lingual, standing in a crowd in New York City, unable to understand the many conversations going on around us in other languages. At least in that case, we realize we are under-educated. We know the people around us are speaking another language, even though it’s gibberish to our ears.
Isn’t there a parallel? The behavioral language of autists is another language. We neuro-typicals just aren’t evolved enough to have realized that what looks like gibberish to our eyes is in fact a language that we haven’t had the wit to learn. Yet.
Thank you for writing this Barli. I actually wrote a much longer piece, but then in a moment of anxiety removed two of the paragraphs because I didn’t have time to rewrite them in a way that expressed what I was trying to say in a more cohesive way. I worry about coming across as too strident. I worry about being too critical, but I’m also tired and I am tired of listening to all the well meaning talk about “awareness” knowing that most autists are out there living their lives, while none of this “awareness” is actually helping them. I recently read an article about presumed incompetence and I thought of Emma. What price does she pay each time someone looks at her and assumes incompetence?
Always love hearing your thoughts, Barli. XXX
Well said Ariane!! Well said! 🙂
Thank you Becky!!