The debate between the autistic community and parents and caregivers of dependents with autism rages on. The caregiver and non-autistic community does not, will not, see how the outpouring of support for the mother who tried to kill herself and her autistic daughter, affects those of us in the autistic community. "I think she (the mother) should not be charged," one of my friends said. "I think she should," I told her. "As you know, I am autistic. And it does send a message to us, that our lives are not as valuable." "No," she said, "that is not true."
And so we are told, "that is not true." But what nobody is asking us, is WHY do you feel that way? There is no attempt to put themselves in our shoes, only the mother's. Once again, our voices are not being heard.
One of the things I learned in a communications workshop at work is that it is not what is intended that is important, it is how your message is received that is important. The supporters of Issy Stapleton's mother may not INTEND to give the message to the autism community that our lives are not important, but it sure has that effect. And they are not addressing that effect. They are blowing us off.
In the church I just spent three years in, there were several children with autism. The person who thought Issy Stapleton's mother should not be charged with attempted murder has autistic grandchildren of her own. People knew I have autism. But not once did any of these people approach me and ask me for insight regarding their children and grandchildren. Not once. They would rather go to other parents, teachers, doctors, other experts, than to talk with someone who lives with the same condition that their children or grandchildren have. So far, the same in the church I am in now. My advice isn't sought out.
"Where was the autism community when Issy's mother was at her wit's end?" one person asked online. The same place everyone else was in that sad situation. We didn't know about it. We don't have radar. I've had people tell me they know other autistic adults who are successful. People, these people can be valuable resources! But you have to ask us! We aren't going to force ourselves on you. Look, I may not have all the answers or even any answers, but I do know something about autism that your experts don't know and that is what it is like.
"Bless your soul," said one lady today at church when I said I had autism (we were talking about the Stapleton case). I told her, that is exactly part of the problem. You say you work with autistic children. You say you know autistic adults. Yet, what you said to me was patronizing. Demeaning. An affront to my dignity. I said, How would you like it if I said about your glasses, "oh, you have a vision problem, bless your soul."
Her response reminded me of a line in "To Kill A Mockingbird". When the character Stephanie Crawford is reminded by another character that what they have witnessed in court is just a part of Maycomb as missionary teas, Stephanie walks off in a huff. "Well--excuse me!" she says. And another line, in the book, not the play, where Calpurnia, the Finches' cook, tells the children, "You're not going to change any of them by talkin' right, they've got to want to learn themselves, and when they don't want to learn there's nothing you can do but keep your mouth shut or talk their language." There are days I feel like that.
And so we are told, "that is not true." But what nobody is asking us, is WHY do you feel that way? There is no attempt to put themselves in our shoes, only the mother's. Once again, our voices are not being heard.
One of the things I learned in a communications workshop at work is that it is not what is intended that is important, it is how your message is received that is important. The supporters of Issy Stapleton's mother may not INTEND to give the message to the autism community that our lives are not important, but it sure has that effect. And they are not addressing that effect. They are blowing us off.
In the church I just spent three years in, there were several children with autism. The person who thought Issy Stapleton's mother should not be charged with attempted murder has autistic grandchildren of her own. People knew I have autism. But not once did any of these people approach me and ask me for insight regarding their children and grandchildren. Not once. They would rather go to other parents, teachers, doctors, other experts, than to talk with someone who lives with the same condition that their children or grandchildren have. So far, the same in the church I am in now. My advice isn't sought out.
"Where was the autism community when Issy's mother was at her wit's end?" one person asked online. The same place everyone else was in that sad situation. We didn't know about it. We don't have radar. I've had people tell me they know other autistic adults who are successful. People, these people can be valuable resources! But you have to ask us! We aren't going to force ourselves on you. Look, I may not have all the answers or even any answers, but I do know something about autism that your experts don't know and that is what it is like.
"Bless your soul," said one lady today at church when I said I had autism (we were talking about the Stapleton case). I told her, that is exactly part of the problem. You say you work with autistic children. You say you know autistic adults. Yet, what you said to me was patronizing. Demeaning. An affront to my dignity. I said, How would you like it if I said about your glasses, "oh, you have a vision problem, bless your soul."
Her response reminded me of a line in "To Kill A Mockingbird". When the character Stephanie Crawford is reminded by another character that what they have witnessed in court is just a part of Maycomb as missionary teas, Stephanie walks off in a huff. "Well--excuse me!" she says. And another line, in the book, not the play, where Calpurnia, the Finches' cook, tells the children, "You're not going to change any of them by talkin' right, they've got to want to learn themselves, and when they don't want to learn there's nothing you can do but keep your mouth shut or talk their language." There are days I feel like that.
