If you missed the piece this morning on Good Morning America, you can find it online here. There were some wonderful moments, both from Ari Ne'eman and Kristina Chew. I was delighted that ABC included the Ransom Notes campaign, and how our community came together and dissolved it. Transcripts from the show are also available on ABCNews.com as well.
Ari Ne'eman said this early on in the interview, when speaking about a cure for autism, and why some parents are upset over this:
"I think that one of the key issues to remember is that anti-cure doesn't mean anti-progress," he said.
That is so important. People hear "acceptance" and they assume ignorance and even laziness. Accepting my child, accepting autism, does not mean I sit around and allow her to struggle through her life. What it means is that first and foremost, I see her and treat her as the unique, beautiful individual she is. I respect her and love her. I have learned so much from her, she is a gift, and I really am lucky. I do all I can to help her, to ensure she has the skills she needs to reach the next step (realizing it may take a long time to get there, and there may be hurdles along the way).
"Where does disability come from? It comes, in many respects, from a society that doesn't provide for an education system that meets our needs. From people who often discriminate or bully or even injure us, and from a society that is largely intolerant," Ne'eman said.
Society is very intolerant, we see that time and time again. I have always thought of my home as refuge from the world--and now for my youngest, refuge from a society that can be very cruel. I see it in stranger's eyes when she is having a meltdown in the store (the "can't you control you child?" or "what is wrong with you?" stares and glares). Or the perplexed look on another child or even parent's face if she is struggling to do something (a milestone achieved by children younger than her) or when she is hyper, spinning in circles or making odd vocal noises. You don't realize how judgmental the world is until those moments. I always had such hope for the world, it's easy to become jaded when you are in my shoes. Judge me, that's one thing. But, I never dreamed society would judge a young child. It's disgusting.
Lenny Shaffer, a writer with an autistic son, says of the movement, "You're a handful of noisy people who get a lot of media attention, but you don't represent a broad swath of the autism community."
Ne'eman believes history is on his side.
"I can't think of the civil rights movement throughout history that hasn't been faced with resistance and misunderstanding on the part of its detractors," he said.
I really have to disagree with Mr. Shaffer's perception of the "Neurodiversity" or autism acceptance or autistic pride (or whatever else one may call it) movement. I see our numbers growing each day. I see it most apparent out in the world, with parents of other children in our community. To be honest, most of the parents who I know who feel as I do, they simply go about their day and their life. They aren't seeking media attention or attending rallies. They have no beef with the government or with vaccines or anything else. They focus on helping their child, dealing with the schools, and just with living life with autism. Those who feel it is wrong for us to "accept" autism, they tend to shout louder and love the camera. But, I honestly feel that we are a rather large, and growing, part of the autism community.
"We really try and understand him on his own terms," she said.
That is her advice for parents dealing with a child's autism diagnosis and feeling hopeless.
I couldn't agree more with Kristina. I'm grateful for having (by coincidence and luck I suppose) known a few parents of older autistic children just prior to and around our diagnosis time. They gave very similar advice. There was always a lot of optimism in their message. I have never forgotten their words. My daughter has made tremendous progress, I credit part of that to the fabulous doctors and therapists we have (and knowing she was delayed and needed help before age 1). The other part, and I strongly believe this, is that she has a loving place of acceptance to live in. We do not force her into how we think she should be. We realize she often finds comfort in rocking, flaps when she is excited, and has her own "brand" of play. We understand that eye contact can make her uncomfortable. We do our best to prepare her for social outings, changes in routine, etc. We follow her lead, in many ways. I don't think she would be where she is today, if we focused on changing behaviors or actions that society perceives as odd. She is so connected to us, and each day opens up more to us. We'll be able to help her so much more, because she will know we are trying and that we respect her.
The interview ends with Kristina saying this, a beautiful message that we all should remember:
"Acceptance, to me, is the beginning of hope," Chew said.