50 Inspiring Autistic People of 2011: Parents
Submitted by Landon Bryce on Sat, 12/31/2011 - 13:46
Published in
My introduction to this series is here.
When we discuss autism and parenting, we usually refer to the experience of parenting autistic people. These people all talk about parenting from an autistic perspective, with wisdom and love.
Tina is an artist and a mother. If you need an autistic mom to give you some virtual love, you will find no better source than the video above.
Melody recently pointed out that a comment made by neurotypical Aspergers expert Tony Attwood called into question the whole idea of whether or not aspies should have kids. She got a lot of grief, just as she did when she participated in The Thinking Person's Guide to Autism dialogue series. But what she wrote then was beautiful:
Then there is the idea of having a “parent hat” and an “Autistic hat”. I am not just a parent. I am not just Autistic. I am an Autistic parent. There is no difference. In the same, advocacy, parent advocacy, self-advocacy, policy advocacy, they are the same. When I go into my children’s school to advocate for their rights, I’m advocating for my rights, I’m advocating for their rights and I’m advocating for the rights of those who will come after them. There is no divide. I am letting my wants known, I’m letting my children’s needs known, and while I’m at it, I explain how this helps my population. The changes I ask for are not changes for just my little family. What I do, what I ask for, affects each and every family that comes after me.
Same with self-advocating. Making myself known as an Autistic adult, explaining why I don’t want to see a cure for Autism, explaining how life was for me, is for each of my children, I am not advocating for myself, not really. I’m advocating, whether to other families, to an audience or in a one-on-one conversation, for the entire population. I don’t make a divide between those who bang their heads, smear their poop, and can’t talk. What helps one, helps all. Effective communication, emotional and sensory awareness, and support.
In addition to often saying exactly what I want to say, with deadly brevity and accuracy, Paula also wrote a remarkable essay for the TPGA dialogues:
I don’t tend to use the word self-advocate for myself, preferring the term disability rights activist, but if I had to make a choice between being on the “side” of “the self-advocates” or being on the side of “the parents,” I would find myself squarely in the camp of the self-advocates. This is because I always experience the world as a person with a disability, in this case autism. I can’t not be a self-advocate.
Here is the difference that propels me over into the self-advocate camp: When I am communicating with self-advocates in the disability community, even though I am a parent and most of them are not parents, we work together as equals. My competence is never questioned, even when I sometimes fail to do things as well as I wanted to, or as well as others in my community were hoping for. On the other hand, when I am communicating with non-disabled parents (and non-disabled people in general, if they know I am Autistic), too often the fact that I am a parent is not only not taken seriously, it is actually ignored or dismissed. I’d like to be wearing my “parent hat” but people keep knocking it off my head. I can’t number the times I have talked about being a parent at a meeting or conference and then listened as the other parents were addressed, or asked to make comments, or thanked, or called by name, leaving me, as a parent, completely out of the equation. The first time it happened, I thought it was a mistake. I have now come to expect it.
Gavin's blog Life with Aspergers is a wonderful source of wisdom about being a dad with Aspergers and navigating relationships with neurotypicals:
It took me years to learn that my wife no longer loved movies. She didn't care who the director was or what else they were working on. For her, a movie at the cinemas is an "escape" from the rigors of daily life and kids. No matter how good the movie was, she does not want to talk about it afterwards.
Of course, that's all I want to do after a film and our rides home were probably torture for her. It didn't help when she told me to stop talking about it either because she'd mostly use fake excuses like; "I have a headache". "Oh, Ok", I thought, "I'll save this interesting diatribe for some time when she's feeling better".
