Autism activist Dana Commandatore of RethinkingAutism.com is the mother of an autistic boy. She hopes for a better quality of life for autistic people and their families. Dana says, “Through acceptance and understanding we can make progress.” We agree, which is why we asked to interview her about her site, and the provocative and much-needed autism videos she creates. From the RethinkingAutism.com home page:
All too often in the world of autism, celebrity and sex appeal are used to promote pseudo-science and personal agendas. RethinkingAutism.com wants to change minds, change the current media conversation and help give autistic people a more prominent voice in the conversation. Up to this point, certain celebrities and some parents of autistic children have dominated the media with their miracle cures and unsubstantiated theories on causation. This exploits autistic people, their family members and the public. Please join us. Share the videos, read the blog and sign up to be part of our emailing list. Let’s change the conversation one video at a time.
You’ve created a number of videos about autism acceptance and understanding. What inspired you to create them?
I was disappointed and frustrated by the media coverage of autism and the misinformation that certain celebrities were pushing that I felt a responsibility to at least try to get, what I considered to be, important information out to the general public. There is very little coverage of autistic adults in the media. I know there is an entire community of autistic adults waiting to be heard. I want to do what I can to help them be heard.
What is your ideal audience for your videos? Where have you been pleased to see them, where would you like to see them, who really needs to see them, in your opinion?
Good question. I think the general public needs to see them. I would love to see them played before movies (not the first set of Leeann videos — they are strictly for YouTube.com and were mean to be shock and get attention — not for children) as well as television. I would love for young parents to see them so they are not as afraid as they are now of an autism diagnosis. I have heard parents say: “That is my biggest fear [that my child is autistic].” I would much rather see parents hopeful that there is an entire community out there willing to lend support and inspiration.
What are some of your favorite moments in the autism videos you’ve produced?
There is a part in the Autistics Speak video that always moves me. David, one of the autistic adults who graciously lent his voiceover to the video, states, “Society should be concerned about my quality of life instead of preventing people like me from being born.” It gets me every time. And then there is every other moment of every video.
What are some notable reactions to your videos from autistics, autism families, and other members of the autism community (professionals, organizations)?
It ranges from disgust to admiration. There have been some parents who feel I should have my child taken away from me and then there are many more who have thanked me for making a video about how they really feel. Many doctors, teachers, therapists and professionals have encouraged me to keep making videos. My favorite responses have come from the community of autistic adults who finally feel like someone is listening to them. Sure, there are some who disagree with my tactics and don’t really trust my message. But overall the response has been humbling and inspirational.
Your videos put adults with autism front and center, as both role models and teachers. How did those working relationships come about?
After my son was diagnosed, my husband and I made it a point to seek out autistic adults. We wanted to learn as much as we could about their childhood and their relationship with family members. We knew our son was different and that we would have to learn as much about his world as he had to learn about ours.
Was acceptance and understanding always your approach to your son’s autism? Or did you learn to embrace this attitude?
We always accepted our son, so nothing was different when we received an official diagnosis. If anything we were relieved. We now had a reason for his unorthodox approach to life. Not that we really knew what that meant, we just loved him. We never thought about curing him for we always assumed his behaviors were just part of him. We just wanted to make his life as happy and independent as possible.
Has your son seen your videos? If so, what does he think about them?
I don’t think they interest him yet. He is only eight and not very conversational. I try not to make any videos about him for I think that is a decision he can make when he is older. Too many parents of autistic children put their child out there to be scrutinized. Back to the original question, he does love the music in the videos.
What do you envision as the ideal next steps for you, your autism activism, and for RethinkingAutism.com?
I plan on writing as much as I can and getting as much exposure as possible. My goal is to stop doing RethinkingAutism.com for there will not be a need for it. Autistic adults will have a say in the laws and research that affect them and determine how they live their lives. The ignorance facing adults with disabilities is staggering. When the paradigm shift occurs, and there is no longer a need to rethink autism, then I can stop making videos.