OFFICIAL BLOGHER '10 LIVEBLOG: Blogging Autism - Shattering Myths, Finding Your Tribe
Welcome to the liveblog of the BlogHer '10 panel: Personal: Blogging Autism: Shattering Myths, Opening Eyes and Finding Your Tribe. Click here for more info.
Shannon Des Roches Rosa, a parent of a child with autism, moderates the discussion with Shark-Fu, who is co-guardian of her autistic brother, Stimey from Stimeyland.com, who parents a child with autism, and Sharon daVanport, who is an adult with autism.
Carol (@AspieAdvocate) has stepped in for Sharon daVanport
Quote from author.
Autism is more out in the open than it ever has been before, in large part because of bloggers.
Happy to be speaking on this topic. She blogs about her brother -- she's a co-guardian. Doesn't have a background in social work, and spent much time getting frustrated learning the "language" of learning to help her brother. Works in reproductive justice field. "I'm busy, and I'm a sister, and I'm a guardian." Blogging is cheaper than therapy.
Myth she wants to debunk about autism:
Is that autism is a childhood disease that ends at the age of 18. She got caught in that myth herself; her brother is 40. The media focuses on autistic children, which seems empty. Her life and her family's life isn't represented.
Son Leo was diagnosed with autism at age 3. Blogging has been cathartic. The learning curve has been like going to college/grad school all over again. Founded "The Thinking Person's Guide to Autism" with colleagues. This is how we help each other, how we make a difference, how we form community.
Stereotype that autism means misery. The media focuses on the negative aspects, and she didn't know that we could be a happy family. It is not represented. She wants to help people become aware of the joys.
Had autistic brother who died in 2000. Was diagnosed at 44, so no; it's not a childhood disease. When she hears her son laughing, she also wonders about all this "misery."
Old myth still in practice, is related to the "R" word. It used to be thought that all people with autism had cognitive delays. We're moving towards a point where we're learning that the two aren't necessarily connected at all.
The new myth is that all people on the autism spectrum have savant tendencies, and have genius-level abilities. Also, people on the autism spectrum have all kinds of temperaments.
Fortunate that she started blogging when she did. Finding autistic voices online helped her in a practical way, in a way of feeling not alone. Got to a place of "acceptance" much faster than without the blogosphere. Blogging about her son's autism has changed her life and her son's life. From practical ideas to virtual hugs. She also wants to write because her son will grow up to be an autistic adult and wants him to be in a world that knows about autism and is aware.
Assumed that having a child with autism would be life-ending, a life of shut-ins, etc. It's not like that. It's wonderful. There isn't just one way to be autistic.
Open To Floor
Julie (audience) has a 10 yr old with autism. Scariest thing for her with her son's diagnosis: Would I ever have empty-nest syndrome? Wanting a crystal ball to know how it would go. Then, after she had more children, friends would ask if she was crazy. Her other children aren't autistic, and in fact, they are awesome to have around him -- they're like having three therapists working with him, pulling him in to imaginative play.
"He's so lucky to have you." They make him sound like a burden. "I feel like I picked a four-leaf clover the day he was born."
Pamela: Those who live with siblings/family members of those with autism aren't saints, don't have a saint/martyr relationship. She gets on her brother's nerves, and he gets on hers.
Julie says that we need to improve how we teach kids with autism because they are not necessarily cognitively disadvantaged.
Julia (audience) has two kids with special needs. She's been blogging for five years. She blogged about her son's recent psychotic break, and got backlash from her school, which asked her to stop blogging about him. She said no. To stop telling the story would be like saying it's not okay. Other parents have read the story and don't want their children in the same room with him. But she has to tell the story.
Asks: Are we, as parents blogging our children's stories, expecting them to grow up accepting of this technology?
Stimey: If it's not something I'd say to my child's face, it's not something I'd blog. I always make sure that my blog is not something that would ever be able to be used against my son (legally speaking).
Pamela: I don't use my sister's full name. We had long family discussions about whether to use my brother's name. We don't say where we live, try not to give out too much information. I can't get his permission, so I opt not to share his information or his story -- I share MY experience. I strongly encourage people to remember that this lives online forever. You have to be careful of what you put out there.
Shannon: We grapple with privacy with Leo as well. We want people to be able to know, to have the information about all of my son's programs and resources. Now that he's getting older (he is 9), we've decided to stop putting his progress reports online. There's no way for us to know what he's aware of. We are now stepping away from things that might invade his privacy.
Carol: There's always the chance that someone may read something about my son and use it against us in court. But I believe the more open you are, the better things will be. Any decision I have consciously made about your privacy in advocating for you, I am sorry. I encourage you to blog about your annoying mother. If he has problems with it, he's welcome to fight it out -- i'll just be so happy he's talking. One thing I will never blog about is how miserable my life is. You do not want your 16-year-old son ever reading words like, "I wish I had never had this child."
Stimey: Having a record for my son might give him some insight when he is older. I think blogging about him is great for that reason as well.
Pamela: On the flip side, the benefit of blogging too much. Two years ago, my brother threw himself out of a moving van. He was fine, ultimately, but we had to institute a policy with his staff that he couldn't go out unless accompanied by two people. I went and posted this incident online. I got all this feedback with all these suggestions and solutions, and found a solution that worked for us.
Shannon: People do use material on your blog against you. You have to maintain a balance.
"The Joy of Autism" blogger (audience): When I went through a divorce, I had to change the domain name. I've been blogging for five years now, and I have to say the climate has really changed. Much less negativity, more openness.
Go to Aut Con, a conference for and by people with autism.
Shannon: Feels awful that there are parents whose children get diagnosed and then go to sites that focus only on the negative, share "horror stories." Her site is to provide resources, help, realistic stories about challenges, but solutions and community.
Carol: How do parents of unaffected kids do it!? They talk so much! There are a lot of challenges to being just about anybody.
LoveThatMax author (audience): I get a lot of emails from moms who don't blog but read mine, and I spend hours answering them. It's hard to find the time to write them all, but you can't ignore. How do you manage them?
Stimey: Have a few stock emails prepared and tweak them for the situation.
Pamela: I get asked a lot of questions from parents seeking great resources. Sometimes she writes posts to address the questions she gets asked over and over. But still has to try to manage the emails.
Shannon: Directs people to other great blog posts that folks have written.
Carol: It's a boundary thing. Often redirects people seeking advice and problem-solving to the right places, and doesn't really have patience for people who just want to complain.
Amy (audience): Got an email this last mother's day from a grown man who has autism and reads her blog. And wanted to tell her about all the things that his mother did for him. He said, "I wish she had a blog, because she had to do it all by herself. You guys are doing everything right." It was so beautiful to know this man.
Carmen (audience): My oldest one whose sister was diagnosed has said that he never wants kids because of what she's gone through as a parent. Asking if the panelists have experienced this.
Pamela shares that her mom's own story, which was very very challenging, informed her view of how hard parenting a special-needs child is. She knows it's not everyone's story.
Carmen: How do I bridge this gap? He's 18 (and thinks he knows everything.)
Pamela: My mom didn't want to confront what happened after my brother turned 12. She couldn't communicate it. We never had conversations about what happened when he became an adult.
Carol: My brother never got an official diagnosis, and when we were young, there was no such thing as an Asperger's diagnosis. Now I have a son who has the exact same thing that I have, that my brother had. Remember that temperament and behavior are two totally different things. If he's afraid of the temperament, his children will be entirely different. One person's temperament doesn't have any affect on another's. If, however, he's afraid of all the challenges with finding the right services, that's an understandable argument.
Carolyn: 21 yr old son with aspirers, diagnosed at 14. When he was diagnosed, we freaked out. "Thank god my daughter's normal." Then her daughter had a psychotic breakdown. Her fear was that no one would be able to take care of anyone. Her son's now in college. He drives. Her daughter is going to college in the fall. They are going to make their way into the world. "You don't need to read the books, you need to know your children."