I began this blog almost three years ago as a document of my daughter. At that time I knew nothing about advocacy, I knew only one Autistic adult though I’d read the works of the most famous Autistic people ~ Donna Williams and Temple Grandin. I assumed there were few Autistic adults because Autism was an epidemic and I feared it mightily. I had a few people, made up of close friends and family members, who began to read what I wrote. This blog was a place for me to write about how I felt and, while I tried to keep my feelings to a minimum and reported lots of dialogue and any progress I saw, I did write occasionally about how sad, angry, frustrated, scared and yes, sorry for myself I was. I never once considered how Emma might feel about what I was writing because Emma barely spoke, didn’t read (as far as I knew) and the idea of “presuming competence” was one I’d never heard spoken, let alone considered. Regardless, I tried to stay upbeat. I grew up in a WASPY enough environment to believe it was unbecoming to air one’s dirty laundry. In addition, I believed and still do, in the power of positive thinking. I wanted to feel hopeful, even though, so often, it was in short supply.
As time went on and more people found this blog I continued to write about our life. I understood that having an Autistic child made what I wrote more interesting than had I been writing about a neurotypcial child. I never thought of it as an “opportunity” but I was certainly aware that I was being given a platform I might not have otherwise had. I wrote a number of posts where I agonized about what it was to be the parent of such a child. I saw nothing wrong with my thinking. Had anyone said to me then – can you understand that your daughter’s neurology is not “good” or “bad” that Autism in and of itself cannot and should not be judged as a deficit with those whose neurology is in the majority held up as good and enviable, I might have been able to hear them. But no one did say that. No one said anything remotely like that to me. Ever. Not. Once.
Had someone patiently explained the concept of “presume competence” and exactly why it was so important would I have been able to hear them? Had someone explained the relationship between depression, lack of self-esteem, how ALL children, whether they are verbal or not, whether they appear to understand or not, internalize what is said and thought of them, I probably would have understood. I might have even felt the surge of hope I was so desperate for and that I felt so many years later when someone actually did take the time to patiently explain these concepts. If someone went on to describe the problematic and ultimately destructive issues related to functioning labels I might have been able to comprehend, not right away, but I would certainly have found those concepts intriguing and would have wanted to know more. Would these ideas have been enough to change the trajectory we found ourselves on? I like to think the answer is yes. I am just grateful enough Autistic people took the time and energy to explain to me when they did. These concepts are the basis for everything I do and think regarding Autism and my daughter.
Just a year ago, when I began to read the blogs of Autistics who were in their early 20′s, 30′s, 40′s and *gasp* 50′s my understanding changed radically and rapidly. I started to see that if I wanted a personal place to vent I could do so in a support group or in a personal journal, but that what I wrote about on a public blog or submitted to the Huffington Post was reaching far more than just a few family members and close friends. Things were easily misunderstood, my intentions were mistaken, the message I was sending was misconstrued. Slowly, slowly over time I began to realize just how skewed public perception was and how that perception was affecting public policy, the media, where money was being spent. I heard repeatedly how public perception played out in people’s lives. I became aware of how pervasive the inequality and injustice was and remains and I became determined to speak out about it. This was no longer just about my hopes and dreams for my children. This was about human rights being blatantly ignored.
And yet, all of this is tricky. There’s a huge danger of being seduced by one’s own ego. When either of my children become boosters for my self worth and ego I know problems will arise. When being a parent of an autistic child gives me a platform that I otherwise would not have available to me, I need to acknowledge that. Regardless of whether I asked for it, intended or even wanted that platform, I have to respect its presence. When being the parent of an autistic child becomes my identity, I know I’ve drifted away from where I need to be. Writing about my Autistic child cannot be “who” I am. That’s putting way too much pressure on any child, and it sets up an unhealthy and untenable relationship. Trouble certainly awaits me if I forget that.
A Peek at the Hudson River taken from the Highline