Let’s just say, for the sake of this post, that we all agree genetics play a role in autism. (I know – many do not believe this, but let’s pretend we all do because otherwise this post will go off onto so many different tangents I may never get back to what I really want to talk about – inherited traits – and it will require a time commitment many of you may not have or want to give. So let’s just pretend we agree. Ten minutes, then you can go back to believing whatever it is you believe, which by the way, this post is not a criticism of, oh God, you see? I’m already getting side tracked. Suffice it to say, what used to strike me as alien about Emma, is, I now believe, a version of the genes that have been passed down to her.) And that, as you’ve undoubtedly noticed, is one of the longest parenthetical sentences ever written.
I am going to keep this personal because I don’t have permission to review my parents various genetic traits, nor my husband’s, though I’m guessing he’d give me permission had I thought to ask before leaving for my studio this morning, but I didn’t and it’s too early to call my mother. So this is going to be about things I’ve learned and see in myself that I identify with Em. And by the way, this preface of over 300 words, is a perfect starting point because I do not think in a linear fashion. This is actually something I’ve been accused of, not in a oh-you’re-so-wonderfully-creative-in-your-weird-thinking kind of way, but more in a what-the-hell-is-wrong-with-you? way. For more on non-linear thinking and autism, there’s a wonderful discussion on the blog Wrong Planet.
Sensory issues – None of mine cause me tremendous pain as so many of Emma’s do, but I do have some. One benign example is my auditory issues. For a long time I thought I had a hearing problem because there are certain sounds I do not notice. If someone calls out to me, but is standing out of my range of vision, I cannot hear them, much to the amusement of both Richard and my son Nic. Until I get a visual and am able to see them both doubled over in laughter because they’ve been shouting my name for the past ten minutes while I, oblivious, continue to do whatever it is I’m doing, I have no idea anything is amiss. My husband uses a ring tone on his cell phone which I cannot hear. Suddenly he’ll start rummaging around looking for his phone and I’ll ask, “What are you doing?”
“My phone’s ringing,” he’ll reply, while I strain to hear his phone, only to hear silence.
I have a friend whose voice I cannot hear. I literally have to put my head about three inches from his mouth in order to hear anything he’s saying. I’ve had my hearing checked. My hearing is all within what’s considered the “normal” range.
I have spoken before of my literalness. There are certain jokes I just do not understand. That in and of itself has become something of a joke in my family. There’s a group of bloggers who participate in an ongoing “Special Needs Ryan Gosling” joke where they take a picture of the movie actor and then write something – like “Hey Girl, how about I deal with Joey’s sensory induced meltdown while you grab that bottle of wine I just opened for you.” (I just made that up, but am not sure that would actually be a good one, because I don’t really get the joke to begin with.) Not to be a total kill-joy here, but it’s not a joke I’m capable of understanding and I have to admit, I really wish I did, because all the other bloggers are having so much fun with it and I admit, I feel left out. Reminds me of how I used to feel in high school. Laughing along, but not really understanding what was funny. Though I knew enough to not let on that I didn’t get it. And I really do have a good sense of humor. Really. I do. No. Seriously.
For more than two decades of my adult life, I engaged in self injurious behavior. My self injury was in the form of an eating disorder and in dermatillomania, also known as face picking.
I am obsessive and though I do not have OCD, (Obsessive Compulsive Disorder) I can be extremely obsessive and compulsive around a wide variety of things. When I find something that interests me, often design related or subject matter, like autism, I become obsessive and will study and work for hours without realizing how much time has passed. Jewelry design is like that for me and it helps that I have been able to disguise my obsession with it by turning it into a business.
In the past I have used words like alien and other in describing Emma. But I haven’t found that thinking helpful. As long as I see her as so very different from me, I abandon my instincts, my maternal knowing, my own quirks and feel almost constantly confused by so many of her actions. When confused I rely on others who do not and cannot know my daughter as well as I do, to tell me what I actually already know. Which isn’t to say that any and all advice isn’t helpful or is to be rejected, but more that I need to remind myself, Emma is actually a great deal like me in many, many ways and I need to trust myself more in knowing how best to help her by tapping into my own traits, obsessions and sensory issues.
I could go on and on about all of this, but the point I’m trying to make is that the alien analogy, rather than helping me help my daughter, has actually served to distance me from her. When I am able to identify and tap into my own oddities I am better able to come up with strategies and ways to help her whether that is in her reading and writing or helping her tolerate frustrations or teaching her life skills.
What do you think?
Latest piece My Fear Toolkit published in the Huffington Post