I’m one of those people who, when told to do something that doesn’t make sense or that I can’t figure out the reasoning behind the request, questions it. I don’t mean I think about it, while silently complying. I mean I question the thinking out loud as in, “Why are we taking 8th Avenue, when we could take 10th?” or “Why are they asking for the last four digits of my social security number when I just gave them my passport number and anyway it’s a domestic flight?” or “Why take the ice out first when we could just put everything on top and then scoop ice around it?” or any number of other questions that so easily slide from my brain to my mouth before I can stop myself.
I can’t help myself from asking, “Why?” By the way, I am also married to someone who does the EXACT same thing. Some people would call this controlling or being defiant, but I see it as a need to understand the reasoning. Sometimes when someone explains to me their reasoning, I get it, it makes sense and we can carry on, even if I don’t agree with it. But many times the person explains their reasoning, it still makes no sense and that’s when things get problematic. It is at this point I have a couple of choices, I can comply, do something that makes no sense to me, which is physically painful, it literally hurts to do whatever it is or I can refuse to do it while explaining why I cannot or I can ask for further clarification. I tend toward the last two options. I’m all about clarity. I’m really not trying to cause problems or be difficult, I really am interested in understanding another point of view.
There are other questions I have that have nothing to do with any requests being made of me, but the answers affect me or someone I love. Which brings me to a question that’s been very much on my mind recently. It’s a question that has nagged me since I read Lydia Brown’s piece – Protesting Autism Speaks on her blog Autistic Hoya – why don’t people who say they care about Autism want to hear from Autistic people directly? I’m actually being very serious with this question. I want to understand the thinking behind this. Because, you see, when I finally found Autistic people who were writing blogs, I felt like I’d hit the jack pot. When I read Julia Bascom’s blog Just Stimming it was like a beautiful universe unfolded before my eyes. When E. of The Third Glance reached out to me that first time I read her comment and literally wept with gratitude. I think I read her comment a dozen times. When I met Ibby of Tiny Grace Notes at the Disability Conference in New York City, she may as well have been the President of the United States, I was so thrilled. When she flapped because she was excited to meet me, I felt so completely flattered, it was all I could do not to jump up and down with unadulterated excitement. I felt profound relief because:
1) they are Autistic adults and until I found them, I personally knew none
2) they were describing their thought processes, their experiences, their lives and it gave me insight into how my daughter may be processing the world too
3) they introduced me to concepts I’d never considered, such as: Presuming competence and not speaking about my daughter as though she couldn’t understand, including my daughter in decisions that affect her and not speaking for her.
4) The whole idea of being talked about as inferior, as a deficit, as a tragedy and how that directly affected their self-esteem. This last seems so obvious in retrospect, but it was something I hadn’t considered.
5) Having relied on other parents and so-called “autism professionals” up until my daughter was 10 years old, I was incredibly grateful to meet Autistic adults who were able to explain the experience of being autistic first hand. Their experience has helped me help my daughter more than anything else I’ve read or been told.
6) Many of the autistic adults I now know aren’t that much older than my daughter and I found it comforting to know there is a whole community that she may one day choose to join.
I do not read or speak with my Autistic friends and assume they are speaking for Emma. I don’t assume Emma will grow up to be just like Julia or E. or Ibby or Chou Chou or Paula or Amy. Each of these women has helped me help Emma far more than any “autism professional” has. The Autistic men and women I know give me hope. Hope, not just for Emma, but for ALL our children. Hope for our world and our future. I feel grateful to them. I’m profoundly grateful that they’re blogging, speaking out, protesting, reaching out and asking to be heard. Maybe one day my daughter will be among them. I would hate to think that Emma, having worked so hard to communicate, in whatever way that may be when she’s an adult, having worked up the courage to ask a complete stranger, “Want to hear from me? Want to hear what I have to say?” would be answered with silence or an abrupt “No.” I cannot imagine how painful that must be. I cannot imagine what that does to one’s sense of self to be met with such outright hostility. And I don’t understand why.
I am seeing that my experience is not the experience of others. I do understand that, but why? Why don’t people see those who are Autistic and can communicate, whether by typing or speaking , as a good thing, as a hopeful thing? Why is it that some parents don’t want to hear from Autistics who can communicate? What am I missing here? Really, I want to understand this. Help me understand.
How could you NOT want to hear what she has to say?
Emma's Hope Book 