The other day a parent felt I was being judgmental because of my Demanding Speech post. I felt terrible that was her take away from the post, but I also understood why she felt that way. One walks a fine line when criticizing current therapies or suggesting we do things differently while not sounding preachy or judgmental to those who feel the very thing I’m criticizing has helped their child. And I have to admit here that in writing the previous sentence I initially wrote, “suggesting we do things better for the sake of our kids…” which, yeah… that sounds judgmental and yet…
So how do we protest, how do we talk about things, things we feel outrage about, things we believe are wrong without sounding like all those “autism experts” I so often criticize here on this very blog?
And the only answer I have, for myself and anyone else, is – stay open to other points of view, be willing to listen and learn. But how do I speak my truth while understanding that what I say may upset some? I don’t think it’s possible and I’m okay with that. Not everyone is going to agree with me. That’s okay. I don’t agree with the vast majority! But what I won’t do is stop talking about all of this. I won’t. And while I talk about all of this, people comment and email and reach out and give me feedback and many times after reading what they’ve written I rethink my position. I change, I grow, I learn. All of this is a process, and by that very fact it means that what I believe, is in a state of constant flux, there’s movement, more to learn, more to understand.
I know what it feels like to feel another person is judging me. It isn’t a great feeling. And it doesn’t help me understand the other person’s point of view and it definitely doesn’t make me feel particularly inclined to stick around to hear what else they might have to say. In fact, when I believe someone is judging me, my visceral response is to retreat or fight back. But, if I can let go of that initial desire to flee, I often learn, even if it is a lesson in verifying what I already thought. The most important thing I can do is not preach, not convince, not judge, but speak honestly about my experience. If that resonates with others, great, if it makes people angry, so be it, if it alienates some, okay, but this blog is about our experience, mine, Emma’s and Richard’s. I don’t speak for anyone but myself. I don’t pretend to know what Emma’s experience is, even when she writes about it here. The best I can do is interpret it, respond to her words, talk about what it means to me and ask more questions, but that’s it. The same goes for my husband, I don’t and cannot speak for him.
And in the end, that’s all any of us can do. I hold deep convictions about much of what I see going on with autism. I object to most of what is commonly believed to be the “truth”. Yet I also know I continue to get things wrong. I have tremendous humility when it comes to all of this. I am constantly learning. People, usually Autistic people, are generous enough to share with me their experience of things and it changes my thinking. I listen. I revise. I tweak my constantly shifting beliefs. I ask questions. I continue to learn more, I realize how I haven’t gone far enough in my thinking. I dig deeper.
But when I am in a room where a teenage boy is being watched like he is a prisoner while eating his lunch, pelted with questions he cannot easily answer by speaking, his favorite food, in this case, rice, withheld until he finishes some other food, again in this particular case fresh, cut up fruit, overseen by someone else, whose only real power is that they can speak easily while the boy cannot, spoken to with barely concealed impatience and irritation, I’ve got a problem with that. When I see a group of people being treated as unequal, with less respect simply because their neurology is in the minority, I feel physically ill. When someone who cannot communicate through spoken language is treated as incompetent I feel sick. When people speak to my daughter or speak about her, often in front of her, with exasperation, irritation, barely disguised annoyance, I feel enraged. When a human being is treated with condescension by another human being simply because that person is deemed less intelligent regardless of whether this is true or not, I am motivated to speak out.
This is personal, it isn’t just some issue I feel strongly about. Do I feel judgmental? Sometimes, but more often I feel sad.
What follows are a few photos that make me happy…