Sunday, August 15, 2010

Blogging autism and shattering myths: BlogHer 2010

I spent last weekend in New York City with 2,400 mostly women bloggers at BlogHer 2010, a conference that brings together online writers from all over the world.

I've been to BlogHer before, but this one was special to me because I had the opportunity to speak on a panel titled Blogging Autism: Shattering Myths, Opening Eyes, and Finding Your Tribe.

My co-panelists were a wonderful group of women, each of whom brought something unique to the discussion. Pamela Merritt is an activist who is a co-guardian of her adult autistic brother. Shannon Des Roches Rosa is a powerful and influential voice in the online autism community and mother to a child with autism. Carol Greenburg is an autistic adult as well as the mother of a son with autism.

Each of us shared a myth about autism that we hoped to dispel through our writing. Pamela reminded us that autism is not just a childhood condition. Shannon wants to debunk the idea that autism means misery. Carol brought up the fact that autism and cognitive deficits don't necessarily go hand in hand but that not all people with autism are genius savants either. I see many myths about autism, but the ones that I mentioned were that autism is not life ending and that there are many different ways to be autistic.

Of course I think the words that we spoke and the comments from the audience were important—very much so. Even more important, however, was the powerful experience of sitting in a supportive room with a group of people who care about people with autism and want the best for them. When you're in a room like that, you don't have to explain, you don't have to justify, you don't have to be defensive. You just have to be. And you can be because the other people in the room get it, they really, really get it.

One by one, my co-panelists and I spoke, followed by women from the audience who needed to speak about their experience. They needed to say my kid isn't lucky to have me—I'm lucky to have him. I feel like I picked a four-leaf clover the day my son was born. My child's school counselor told me to stop blogging about my child at school. Am I telling my son's story or my own? If my child grows up able to tell me that I am terrible for writing about her, I will be the happiest mother in the world. What can I do to support the desperate women who email me for help? What about my autistic child's sibling who is scared to have children of his own?

I told parts of my story as well. I told about how I want to write to support other people and that I crave the support I get from the online special needs community myself. I write because my son is going to grow up to be an adult with autism one day and I want the world to be closer to accepting him than it is today. I write to express myself creatively. 

Most of all, however, I write for my children. I write so that one day they can look back and read about what they were like when they were four, five, six years old. I hope that my children, my autistic son in particular, will be able to get some insight from the words that I write today.

It was then that Amalah, a well-known and very talented blogger, stood up to speak. She told about a man with autism who emailed her last mother's day. He wrote to thank her for writing about her son with special needs. He wrote to say that he can't thank his mother and he would not even be able to verbally express himself to her, but that her writing—and that of other mom bloggers—matters. He wrote to say thank you. Thank you for writing for your son.

Through teary eyes, I watched as sobs began to spread through the room—as validation came to all of us through an anonymous letter to one of us.

There were many powerful words spoken in that room last weekend. Each of us responded to a different anecdote, a different bit of advice, a different myth that was being shattered, but we did it together in an atmosphere of support, and that feeling will stay with me for a long time.

Jean parents three children, one of whom has an autism diagnosis. She blogs at Stimeyland, runs an autism events website at AutMont, and can be found on Twitter as @Stimey. You can read the liveblog for the Blogging Autism panel on the BlogHer website.


  1. Jean, Thanks so much for this post. I have been writing about my journey with my son, Joel, for 25 years. He has been the single most important spiritual teacher of my life, aside from Jesus. The call to write out of our relationships with our children is such an important call. I write to bring hope as well as to discover who I am as a child of God. I am always happy to "run into" others who are writing about this autism journey to bring hope and healing to the world.

  2. Thank you for this post and for having such a panel at the conference. I was leery of going to BlogHer because I thought I wouldn't fit in with the other "mommy bloggers" there - a similar fear I have for my son fitting in in life. Now I know I wouldn't have been alone. Of course, that is also the reason why I write my blog. I hope your panel becomes a fixture at the conference.