This Is Autism, on Leo's Terms

Hiking!
With somewhat reluctant sister in background

Today is the This Is Autism Flashblog event, a positivity reframing response to Autism Speak's Suzanne Wright's attempt to frame autism as a national catastrophe.

If you know or read me,  you know I have Big Thoughts on many aspects of autism & autism parenting.  But when it comes to defining autism? That's a highly individualized experience -- which is one reason so many people were outraged by Suzanne Wright's attempt to hijack it.

It's also not my experience. I do not have an autism diagnosis. My son does. So I'll let him show you it's like to be him, to be an intrinsically happy Autistic person. It's not always easy, especially the communication. But he's working on communicating, we're working on that with him, and for the most part he's got a whole lot of joy going on.

For my part, I'm in love with my son, and grateful to be his mother.

 

Video description: Seven mostly very peaceful minutes of Leo hiking in the woods and grasslands. He has occasional Autistic tics and stims. About five minutes in he uses scripted language "We're not going to go back to the car" to let me know that he's not happy about the trail going uphill. I reassure him that he's great, and he uses echolalia "you're great" to acknowledge what I said. At the end he needs me to give him my full attention, and I turn off the camera.

Speaking of Autism and Bridge Building

I have post on the Autism Speaks blog today: Can You Appreciate My Son's Successes? The essay will be a familiar to you, even if you've only been reading this blog for a short while, as it's a rewrite of the I Wonder if You Can Really See My Son post.

If you've been reading this blog for a while, the fact that I posted at Autism Speaks may shock you -- but not if you've been paying attention lately, and have been reading my articles on BlogHer as well. Last month, I had this to say about my evolving attitude towards Autism Speaks:

Autism Speaks is a controversial organization. They have angered and alienated many members of the autism community. But they are also powerful, entrenched, and well-funded. So, instead of waging war against Autism Speaks, "free range Aspergian" and Look Me in the Eye author John Elder Robison decided to join their board so he could effect change from within:

"There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I’ll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal."

We've already seen results: Autism Speaks now funds one of my favorite autism community endeavors: Alex Plank's WrongPlanet.net YouTube channel. I can't wait to see what else Mr. Robison helps bring about.

My Autism Speaks article about Leo is not about changing him, or curing him, or seeing past him towards his future -- it is about appreciating him and all his hard work, right at this very moment. I hope that our cheerleading for Leo reaches parents and relatives who haven't encountered loving, accepting attitudes. Autism Speaks recognizes the need for more such positive advocacy, and I am grateful to them for posting my essay (as I am to Jess for orchestrating AS's republish request).

We need more bridges built in our community, but that doesn't mean we need to compromise our beliefs along the way. It makes sense to work with Autism Speaks to spread messages that benefit our entire autism community, just as it makes sense to question them if they misstep.

We need to think big picture. I've been saying that a lot lately. It's why we featured a post on by Holly Robinson Peete on The Thinking Person's Guide to Autism, on autism issues the media continues to overlook. In her essay, Holly spoke about later autism diagnoses among minority children, puberty, adult autistic self-advocacy, etc., -- all issues that need more support, and open discussions. Mentioning her shared concerns with Jenny McCarthy makes Holly's article even more compelling -- she's in no way dissing Ms. McCarthy, but she's pointing out that -- when it comes to our autism community's needs, we need to think bigger, think harder, think more inclusively. We need to try to come together.

Right now.

New & Upcoming: Alison Singer Q&A; Oh, Internet!; Teen Bullying

Got me a new post up on BlogHer, about how there is no reason for those of us with special needs in our lives to be sad and lonely if we have internet access. We can be sad and lonely TOGETHER! I jest, but seriously, people -- if you're feeling isolated, Twitter and Yahoo! Groups are just waiting for you to plunge into their warm, squooshy, welcoming depths. I have specific recommendations in the post, but don't forget to leave a comment about your own favorite online special needs community resources, too.

Can I Sit With You? has a new post, as well, with guest input from tween and teen social skills and advice expert Annie Fox. She covers four frequently asked teen bullying questions, with ideas for what kids can do in each scenario. Meaty stuff. Check it out and let us know what you think about her take on teen troubles.

On October 6th I'll be doing a BlogHer Q&A with Alison Singer, founder and president of the Autism Science Foundation. Whether Ms. Singer makes you cheer or spew nastiness, I am certain that you, like me, are curious about the direction and goals of the Autism Science Foundation, why it was founded, and how it will differ from Autism Speaks. Read Ms. Singer's own perspective on the "driving off a bridge" statement in the Autism Every Day video, neurodiversity, and autistic heterogeneity, then send me your questions or leave them in the comments before September 27th.