I’m reposting Ariane’s recent Huffington post below. I think it’s one of her most eloquent, powerful and important posts. Whoever is in charge of Huff Post Posting apparently didn’t agree with that assessment since he/she buried it in the Huffington morgue and now it’s been wheeled away for cremation. Ariane wanted the piece to generate some excitement about her intention to post the writings of autistics on Huff (and here) in an effort to make people more AWARE of what life is like on the inside of ASD. Reading the blogs of autistics has completely changed our perception of ASD, our children, our goals, our life together. Hopefully Ariane’s “call to listen” will spread (hint, hint) and more people will hear the joy, laughter, hopes, fears and frustrations of autistics who have been discriminated against, marginalized, disenfranchised, bullied, or simply ignored by ‘normals’ who can’t bear to look, listen or care. So without further ado:
A Call to Listen
The beginning of my “awareness” regarding autism came in the form of an apologetic voice over the phone. “I’m sorry to be the one to tell you,” she began. I don’t remember the exact wording of the rest of the sentence as I was too distracted by her apologetic tone and sadness. I remember fighting the urge to make her feel better. Responses like – “It’s okay”, or “it’s not your fault” or “don’t feel sad,” went through my head as she continued telling me that my daughter Emma had been diagnosed at the age of two with PDD-NOS. Then she asked, “Do you understand what that means?” I wanted to say, “No, actually. I have no idea what that means.” Not wanting to appear rude, I said nothing.
I knew very little about PDD-NOS (Pervasive, Developmental Disorder – Not Otherwise Specified.) Did it mean she’d become an independent adult? Would she be able to live a happy life, filled with things and people she loved? These were some of the questions ricocheting around in my mind. When I didn’t answer, the voice said, “Do you agree with the diagnosis?” Was this a rhetorical question? How could I answer that? If I disagreed, would it somehow change the diagnosis? I remained silent. “Are you there?” she finally asked. And suddenly all I wanted was to be home with my husband, Richard, my son, Nic and my daughter, Emma.
Two years ago I began a blog out of pure laziness because I hated writing emails updating those members of my family and friends who were asking about Emma. I figured I’d write a blog, relieving myself of the more cumbersome mass emails I felt obliged to send. I have documented everything from Emma’s initial diagnosis of PDD-NOS to her diagnosis two years later of “autism” to our (successful) attempts at getting her out of diapers, to the evolution of my perceptions, regarding Emma and autism. The blog began as a way to document Emma’s journey, but it became a document of our journey too.
I have never stopped researching and trying to find ways to help Emma with her GI issues, her articulation and language processing, her discomfort with transitions and her need for routine and rules. But it wasn’t until recently and because of a comment left on my blog that everything changed. I discovered a world I didn’t know about – blogs written by autistic adults who were more than capable of speaking for themselves. My views and “awareness” have dramatically changed as a direct result of reading and listening to those voices.
What if, instead of receiving the phone call I did when Emma was first diagnosed, I received a call that went something like this:
“Your daughter has been diagnosed with autism.”
“Let me give you a list of blogs and people you can call who have been where you are now. I think you’ll find them invaluable. These are parents whose children are autistic and autistic adults who are happy to speak with you. They will help you help your child.”
“Yes! Your child is not broken or damaged. In fact, your child is simply different. There are ways to help her. Don’t worry. Even if she is non-verbal, there are methods that will help her communicate. There are countless things you can do that will mitigate some of the stress neuro-typical parents sometimes have in trying to understand their autistic child.”
“Oh thank you. That’s wonderful. I so appreciate your help.”
“It’s my pleasure. I’m sending you some links and contact information to get you started.”
“Thank you so much.”
“Remember, this diagnosis is not a death sentence. It is a starting point. Don’t be frightened by it. Don’t ever underestimate her potential. You are not alone and neither is your child.”
What if autism awareness began with listening to adult autists describing what their lives were like? What if those same autists were on the boards of every autism group? What if all of us, whether we had an autistic child or not were aware of autistic adults living happy, fulfilled lives? How would that change our “awareness?” I am profoundly grateful to each and every one of the autists who are speaking out and expressing their opinions on their blogs and through other forms of media. If we want autism awareness, these are the voices that need to be heard. It is up to us to listen.
Throughout the month of April in commemoration of “Autism Awareness” I will be posting the writings of several autistic adults in a series of posts entitled:
Autism Awareness = Listening to Autists
I loved this post! I shared it with everyone i knew. This has been life changing for me I have to say. Thank you!
Thank you so much Kelly. Some of the comments on HuffPo made me all the more determined to get the word out and ask people to listen.
Like this one – “…I have a hard time acknowledging my Asperger Syndrome publicly because I feel like it might impose on someone or make them uncomfortable…”
Or this one – “I am 27 this year. I got my Asperger’s diagnosis when I was fifteen. It was given to me while hospitalized, matter-of-factly, without any hints of what it meant. I didn’t even understand what it was, after all, I did want to have a social life, I did understand figurative speech, why would I have a PDD?
I haven’t dared to ask myself the question: what if that doctor had said, “hey, you have this condition called Asperger’s. It’s not a fault, nor something you should have fixed. It does just mean that in the same way that a boat is steered differently than a car, your brain does some tasks differently than others’ might do.”
Thanks again Kelly, for showing me this alternate universe exists!
It was a beautiful message Ariane. Last night I attended a Disability Forum in our local community. The theme was be what you want to be. It was about empowering people with disability. I thought of you when a group of perfomers did a piece about not being seen or heard. It ended with them shouting “listen!”
Oh I love that! Thanks so much Liz. I loved your comment on HuffPo. It was really beautiful.