Let's clear up a common misconception:
I do not dislike the parents of autistic people. In truth, I have more friends who have autistic children than I do autistic friends who do not have children. And my closest friends in the autism community tend to be people who have kids, although I certainly have very good friends who don't. But because I'm 47 and I spent years as a classroom teacher, I often relate better to people who have kids. Because I'm interested in kids and I don't have them, I like being friends with people who do.
I learn a lot from those friends, and, even more often, they clarify for me things that I am on the verge of figuring out for myself.
Like how to learn about people, including those who have autism. Two of my friends who are mothers of autistic kids clarified for me just exactly how it is that we learn about each other.
It's painfully simple.
We ask, we share, and we listen.
That's what my friend Kerry did with her son Brady, who has Asperger's syndrome and is seven:
I asked Brady what was kindergarten like.
He said, don’t ask me that, ask me about a part of kindergarten.
I asked him, how was recess?
When I was at recess when I was 5, I did not like it. Kids were everywhere. It bothered me. I did not have a safe spot. I kind of just walked around. I kind of did not play many games I guess. I did not know where I belonged.
She asked, he shared, she listened.
That's how to learn about autistic people.
It's how to learn about people.
My friend Jess shared a part of her life that she has been quiet about up until now:
Just before I met the man who is now my husband, there was someone else in my life, someone wonderful, someone with whom I had a nearly electric connection, someone who was smart as a whip and funny as hell, someone who was talented and beautiful and who, in turn, made me feel talented and beautiful, too, someone who challenged me and made me think and feel and try new things, someone who pushed me to be a better version of myself, someone whom I adored, and someone with whom my life would have been -- from the outside, at least -- very, very different had time written a different script for us, because, depending on where we chose to live, we might not have had the right to marry, and because there might have been people in my life -- in our lives -- whose preconceived notions about love would have changed their opinion of me. I never had to live that. I have no idea what that really feels like, but only because time wrote a different script for me and the person with whom I ultimately fell in love for keeps happened to be a man.
It doesn't come up much, but there are moments. There are dropped pronouns in stories of my past. There are thoughts left without a voice. And then there are times when I am praised for being an ally to the gay community. It is in those moments that I feel the most like a fraud.
She goes on to explain how disclosing sexual orientation is related to disclosing autism.
And people have listened.
Other parents and autistic people have learned that the category "bisexual" can include someone we love (or includes another person we love).
Gay and bisexual people have learned that autistic people and their families face some of the same things we do.
And the world grows let a little less dark and a little more friendly.
That's the lesson for today.
Jess at Diary of a Mom links Todd Akin's ignorant comments on "legitimate rape" and abortion to the way that neurotypical "deciders", especially those at Autism Speaks, routinely treat autistic people with no consideration or respect:
Yesterday, President Obama said that Akin’s comments “underscore why we shouldn’t have a bunch of politicians, the majority of whom are men, making health care decisions on behalf of women.”
And that was when it hit me.
Last week, I had a pretty deep conversation with Liz Feld, the President of Autism Speaks. We were talking about the words that we use. About how we discuss autism in the public forum. About how difficult it can be to create a balanced perception of such a broad spectrum. About how we need to fight for help for the disabling aspects of autism while steering clear of demonizing it in order to do that. About how difficult it can be to set research priorities for such a wide array of people.
We had gotten into some of the nitty-gritty. I was explaining why a particular term was problematic and I said that I’d heard self-advocates condemn its use. She asked what they would prefer that we use. She really wanted to know how to better frame it. In context, the question came out, “So what do they want?”
And Jess gets the answer exactly right:
I can’t answer the question because I’m not the one of whom it should be asked. They are.
What they want is representation. What they want is to be included in the decision-making process. What they want is for us to stop asking *each other* what they want.
The Huffington Post publishes the beautiful letter that Jess Wilson wrote to her autistic daughter Brooke on her eighth birthday:
Over time, you changed everything. You sure as heck changed me. Thank God. You changed the mother I thought I would be into the one that I needed to be. And it wasn't just me. You changed your daddy and your sister and everyone who came into our world. You laughed at what we thought mattered and showed us what really did. You stretched us past our insecurities and doubts to a place painted with a technicolor brush. With the vivid colors of a life lived awake, alive, aware. You pulled us into hearing beyond the background noise, tuning in to a totally different frequency where there IS no background. Where every utterance is crisp and clear and has equal meaning and weight and beauty.
You made us cry with your anguish yes, but oh, my sweet girl, how you've made us laugh! And God when you laugh -- well I would swear the heavens break open and flood the earth with joy when you let it loose. How did I describe it once? The laugh that starts with her shoulders and takes her whole body along for the ride. The laugh that sets her eyes on fire and whose sheer energy could launch a rocket ship and send it into orbit. The contagious laugh that leaves an electric happiness in its wake. There is no greater gift than that laugh.
Remember Daniel Corby.
It was less than a month ago, on March 31, 2012, that Patricia Corby was arrested by San Diego police. When she was arraigned, prosecutors said that she had told the officers that she had drowned her four-year-old autistic son Daniel. This is the reason she gave:
In an interview that day, she told police that the boy was autistic and that she didn’t believe he would have a life or a future without her, so she decided to kill him, the prosecutor said.
Jess Wilson reposted her 2010 response to the deaths of Saiqa Akhter's children Faryaal and Zainmay at The Huffington Post:
There are no words to describe the horror of what this woman did to her precious babies.
There are no words to adequately condemn the murder of two innocent souls.
There are no words to contain the grief that we feel for those beautiful children.
There are words, however for what we can do for one another as a community of those who care for children, particularly those who do not fall into the category of the "normal children" that this woman thought she wanted.
We can support one another. We can show those who don't see the beauty that accompanies the challenges that there is joy in this life. That there is sweetness and faith and celebration and grace in raising a child -- or children -- with autism.
At the Autistic Self Advocacy Network, Zoe Gross wrote about "Killing Words":
Let me present to you a sequence of events.
If you wrote an article about George Hodgins’ murder, or if you gave a quote for one, or if you covered it on television, or if you blogged about it, or if you commented on it,
if you said that no one should “judge” the murder as wrong,
if you said that Elizabeth Hodgins was “driven to murder” by George’s autism or by “lack of services,”
if you called the murder “understandable,”
if you said “it wasn’t a murder, it was a mercy killing,”
if you said “all parents of special-needs children have felt this way,”
please take a minute to wonder if Patricia Corby heard you.