I’ve turned off the lights at Asperger’s at Home. My short-lived third blog fell prey in part to time pressures and in part to my reluctance to screw up. Some stinging comments and scorching tumblr feed rants from my post, Love, By Any Other Name, left me shaken and doubting. A few weeks of theoretically “dialogue” posts on The Thinking Person’s Guide to Autism, each day with dozens of comments from autism self-advocates (those on the spectrum who advocate for themselves and others on the spectrum) and parents of autistic children, vitriol flowing back and forth (mainly from self-advocate to parent), kicked me closer to the electronic door. I’ve decided to leave regular autism blogging to others.
A few good friends have encouraged me to grow a stiffer spine and thicker skin. I wear my heart on my sleeve, and that advice would serve me well across my life. But that’s not why I’m leaving.
Neurotypical privilege is the term I learned a few weeks back in the dialogue turned diatribe on TPGA. I’ve long been aware of my white, middle-class, right-handed, heterosexual, (currently) able-bodied privilege. I’m also a female non-Christian. I’m not so sure what I’m to do when any of those situations unto which I was born or raised except be aware and alert to the benefits that brings me while being sensitive to those who aren’t that long list. I was brought up firmly middle class in a largely black upper middle-class neighborhood, and the privilege part of “white” didn’t resonate until around the age of 10. Still, I’ve received plenty of privilege for characteristics I did nothing to earn. I’m sorry seems grossly insufficient.
So, unaware neurotypical privileged person that I was (I know better now), I blogged about my son’s autism. Specifically, I blogged about how it affected me. I used language that suggested that some of the characteristics related to my son’s Asperger’s were hard on me. I discussed his difficulty with perspective taking, his difficulty reading nonverbals, his social delays, and, in a fit of honesty, I even said I was tired of Asperger’s.
A bit of self defense. I love my son. I’d not remove his Asperger’s (although I’d love to release him from his anxiety) anymore than I’d remove his brilliant mind, laughing eyes, and sweet snuggles and purrs. It’s all part of who he is. It’s not to be cured, exorcised, rejected, or “treated”. It’s just him, and I love all of him. (For the record, sometimes that mind drive me nuts, too. Don’t get me started on the mouth that goes with that mind.) But sometimes, I’m tired and defeated. I had written out of my experiences and feelings. I had often written to sort those two things out. Trite as it sounds, I’d written from the heart.
But it seems I made mistakes. Re-reading some of those posts, I can see where I went astray. I overstepped my experience with my son and mused about the ways the characteristics of Asperger’s (generally from the DSM IV) were reflected in him. This matching of definition to experience is a favorite word pastime of mine, especially when writing or arguing a fine point. Yes, I’m blogging from my own experience, looking for personal growth and a bit of release from the stress that builds up some days. I’ve worked hard to be fair to my child in that process. Since he likes to read what I write (and would undoubtedly complain if he disapproved), I’d not worried about offense. Yet, I’ve offended.
Could I do it differently, with more thought to those with autism who may read it. Probably. Do I want to throw my thoughts through another filter? Not now.
Not because I don’t care about the rights of autistic people. Not because I don’t think the voice of those with autism matters. Not because I know more about autism than those who live it from the inside every day. Simply because it’s not a battle I want to fight now. I don’t have the energy to make sure I get it all right, that I really give those with autism their due. Because I don’t entirely have my head wrapped around that neurotypical privilege that I’ve just learned I have. Perhaps later, with more time listening to self-advocates and simmering this new stew of information, I’ll step back in.
Not that autism won’t find its way to this blog and Quarks and Quirks. It’s part of my life, part of our lives. My younger’s Asperger’s touches our daily routines, homeschooling, church life, play, and sleep patterns. It’s not leaving, and that’s fine by me, but I’ll return to this forum to ponder, wonder, and wander about what autism means to us.
I’d challenge others to consider neurotypical privilege. Visit Thinking Person’s Guide to Autism. Lurk on the forums on Wrong Planet. Keep your mind open. And if you really want to know what’s going on in the self advocacy world, here’s a few reading opportunities: AutisticSpeaks, Illusion of Competence, Journeys With Autism, and many more.