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 (Pervasive, Developmental Disorder -- Not Otherwise Specified). 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. Did it mean Emma would 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 that memorable phone call when Emma was first diagnosed, I received a call that went something like this:
"Your daughter has been diagnosed with autism."
"Excuse me?"
"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."
"Really?"
"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's 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."
For more by Ariane Zurcher, click here.
For more on autism, click here.
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Lisa M. Dietlin: Making a Difference: The World of Giving -- April Is Autism Awareness Month
John Elder Robison: Finding Challenging Work
Your comment has inspired me to write a post on my blog with links to specific sites that have helped me enormously and have changed my perspective on autism, my daughter and life in general. Thank you for reaching out. In many ways what you are going through now is the most difficult as it can all feel so overwhelming. but keep reaching out there are so many of us who are happy to listen and/or share our experience. As an autist wrote to me - we will soldier on ... together
and gain a realistic approach to understanding outside the medical formal. Lizi
This is one of your most eloquent, powerful and important posts. I wish it hadn’t been buried in the Huffington cellar. With Autism Awareness month looming, your focus on the thoughts and feelings of autistics is essential in understanding what life is like on the inside of ASD. Reading the blogs of autistics has completely changed my perception of ASD, our children, our goals, our life together. Hopefully this “call to listen” will spread, and more people will hear the joy, laughter, hopes, fears and frustrations of autistics who are able to tell their own stories in their own words.
To the people who commented in a critical way – inferring you don’t ‘get it’ that autism is a neurological disorder causing damage and untold difficulties, or that there are many non-verbal autists who are unable to tell their own stories – I know you get it. I get it too. But what the majority of people don’t get – is a chance to hear the autistics who have been discriminated against, marginalized, disenfranchised, bullied, or simply ignored by ‘normals’ who can’t bear to look, listen or care.
Your messages have reached me in Spain. Thank you for all your efforts
Rgds
Bill Hedley