Pamela Merritt, a.k.a. Shark Fu, streams tireless, outspoken, and completely original social commentary on feminism, race, and politics both on her personal blog Angry Black ***, and as a contributor to Shakesville, RH Reality Check, and Feministing. She is the co-guardian of her brother Bill, an adult with autism, and in that role will be speaking on the BlogHer10 Autism Panel. But I couldn't wait until then to ask her about growing up with a sibling with autism, and advocating for Bill as an adult, because those topics concern almost every last parent whose child has autism.
Tell us about your brother Bill. How old is he? What are your favorite things about him? What other things make him lucky you love him so much?
Bill will be 40 July 5th -- I can hardly believe it! I love his smile and his enthusiasm for life. Bill has a way of making you want to see him happy just to experience it. Honestly, I feel lucky to have him in my life. I have a lot of friends who have distant relationships with their brother and that distance has nothing to do with autism, so I feel blessed to have a closeness with Bill that’s lasted through some pretty tough times.
When did the word "autism" first enter Bill's life? Was it at the same time as it entered yours? Did the label make a difference?
Bill was diagnosed around the age of seven … it was a process back then, so I don’t remember being told he was “autistic” until he was nine and I was six or seven. The label was frustrating because none of my friends knew what the hell it meant. I found it hard to explain until the television show St. Elsewhere introduced an autistic character and then the movie Rain Man came out -- finally I had something well known to point to and say “Bill’s like that but different.”
Did you and Bill ever go to school together? Why or why not?
Bill and I never went to school together, although I did spend most summers at his summer school because it was easier for my mother than driving three kids all over the place. My sister and I would read while Bill went to speech therapy. Other than that, we never went to the same school because Bill was enrolled at the Judevine School for Autistic Kids and I went to public school. Bill has never been mainstreamed.
How did your community treat Bill before he was an adult? Was he welcome, included, ignored, or did it vary by person?
We are lucky in that our neighborhood and community treated Bill very well. It varied by person, but most folks tolerated Bill in a time when seeing autistic behaviors in public wasn’t all that common. People stared and let their children stare, but we only had one incident when a woman asked my mother why she took him out in public. That may be because of my mother’s fierce reaction to that, though. Most important to me is that we did not nor do we now fear for Bill’s safety in the community.People understand that he’s different but not threatening.
You constantly stand up for Bill both on your blog, and IRL as his legal co-guardian. Did you ever have to do so as a child or teenager?
Great question! I had to defend against the usual school yard taunts, but no one ever approached Bill. He was highly monitored as a child, so someone would have a hard time approaching him without a parent being around. As a teen I found myself explaining autism more than defending Bill. So, interestingly enough, my role as protector came as an adult.
How long have you and your sister been Bill's legal primary advocates?
What is Bill's current living arrangements, and how were they set up? Will Bill be able to maintain his current routine for the foreseeable future?
Bill is in residential treatment with the same program he grew up in. He has 24 hour one-on-one minimum care, two roommates and lives in a house less than ten minutes from where we grew up. His routine is pretty set and Missouri shouldn’t be able to cut anymore programs since they’ve cut just about everything to the bone, so we hope he can maintain for a while.
Judevine (now TouchPoint) was set up by a parent and then a group of parents. Bill was one of the first students enrolled in the school. They expanded to residential care as their students got older and they realized that autistic children will eventually become autistic adults.
We are looking into ways to move Bill to the city so he’ll be closer to us. It’s easier said than done -- he’d need to find the right roommate match, we’d need to be comfortable with the home and location and then we’d have to map out a plan to help transition Bill from his present neighborhood. But the benefit of being able to drop in on a more regular basis is hard to ignore.
What does autism awareness mean to you?
Autism awareness is about being aware of people with autism spectrum disorder and those that love them. As a caregiver, I often feel alone ... online communities have gone a long way to helping me put our life in perspective. Sometimes just hearing about someone else’s experience makes life better! But ultimately, awareness is about a goal of respect. I want to be able to go to the park with my brother and not have adults point and stare because he’s twirling or making noises. I want parents to explain to their children that staring at someone who is different is rude ... particularly when that person is trying to eat. Awareness is about what comes after awareness ... about how people respond to being aware ... and about the kind of world I’d like to build for my brother and sister and all the folks I love and care for!
Shannon Des Roches Rosa writes about her cheeky, cheerful son with autism and his two sisters on squidalicious.com, is BlogHer's contributing editor on parenting children with special needs, and will be moderating the autism panel at this summer's BlogHer conference. She would like to thank Pamela for playing yet another valuable role in this interview: The Ghost of Autism Future.
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