As I wrote yesterday’s post about Emma’s progress in the past year, I realized how much my perceptions and views have changed since beginning this blog. When Emma was first diagnosed I cycled through a series of emotions fairly quickly. Some, like guilt, grief and anger hit me with a violence that took my breath away. Others ebb and flow, while still others, like acceptance, came more gradually, but all of these things continue to change. My ideas about autism, what that means to Emma and to us have changed. I no longer believe there is a neuro-typical child named Emma hidden beneath guaze like layers of autism. A child who, if we could just find the magic thing that would remove the autism, would emerge, intact, speaking in beautifully, articulate sentences, a child who would suddenly converse with us as though all these years had been silent practice for her grand debut. I do not believe we can extricate Emma from her autism.
I have gone from thinking it was wrong for me to slap such a potent label on her, that it was kinder, gentler, more empathic to say – my daughter has autism – than to use, the more blunt and direct, “she is autistic,” to the question I now find myself continually asking – what would she say, if she could? I don’t know. Until she tells me, I cannot know. But I won’t stop trying to find out.
In my search to understand Emma, I have found voices, and there are dozens and dozens of them out there, autists who, now in their 20′s, 30′s, 40′s and 50′s have blogs where they articulate what many cannot say with spoken language. These are the so called “high functioning” autists who can communicate, some not verbally, but who have found ways to communicate through typing and other forms of communication. Their opinions, their voices, often poetic, at times angry, despairing, brutally honest, always insightful, are making themselves heard through their blogs. Finding these sites has been akin to learning there is a vast alternate universe. There is so much I did not know, do not know, but want to learn. Over the course of the past eight years, with the sole intention of helping my daughter, I have done almost every single thing many speak out against. I didn’t know. I thought I was fighting for Emma. I thought my focus on a “cure” was a good thing, the noble thing, the thing that would release her from the bondage of autism. It never occurred to me that my focus could be perceived as a kind of bondage in and of itself. By the way, I am not beating myself up over this, or more accurately am trying hard not to, but am doing my best to listen and learn.
I know I’m wading into tricky territory here, with many differing opinions about “cures” and how that word is negatively perceived by those on the spectrum, and I don’t want to get into the semantics of it, only to suggest it is a dialogue that is important. It is a dialogue I am trying to understand. I want to understand. One I hope I am coming to understand.
The abuse, the prejudice, the cruelty all of these austists have endured is staggering. One of my favorite blogs, by the incredibly talented Julia Bascom, called Just Stimming is filled with such pain. She writes so beautifully and with such honesty, I read her words and feel overwhelmingly grateful for her voice. E. is another such voice with her blog, The Third Glance. Then there’s Landon Bryce, who’s blog ThAutcast is peppered with youtube videos of himself talking. Provocative, passionate, he is always interesting and someone I would love to have a conversation with. There is LOVE-NOS, a group blog with three authors sharing their views and thoughts, one of whom is Julia Bascom. Another group blog, Wrong Planet describes itself as – “a community designed for individuals (and parents/professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences.”
The point is, these sites are educating me in ways I could not have imagined.
Someone named Kathryn commented on another blog: “Here are two broad categories of parent attitudes about autism. (Others may exist, but these are common and pertinent.)
1. I want my autistic child to function the best he/she can, and will do anything I can to help him/her overcome the difficulties posed in his/her life by autism.
2. I want to have a normal child and will do anything to get rid of this autistic child’s autism, because then I’ll have a normal child again.”
I aspire to be the parent described in #1.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book
Emma during gymnastics last Sunday