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
Emma's Hope Book 
I love aliens. They’re my peeps. I love you too — even though you are genetically immune to my jokes. No. Seriously.
Oh you’re good. Totally sidetracked the whole genetic analysis of yourself, sidestepped articulating your own, shall we say… obsessions, etc. God that is soooo neuro-typical of you.
And FYI, I DO get some of your jokes. The ones that are funny, I get those. Mwah!
BTW, you’re my favorite alien and I guess since you’re Emma’s dad, that kind of has to make her a half alien. She’s my favorite half alien.
It’s called “Shadow Traits” or “Broader Autism Phenotype” – BAP. Some parents of Autistic kids say that their kids are the combination of their and their partner’s superpowers… http://kwomblescountering.blogspot.com/2011/07/bippity-bappity-boo.html is a good introduction to the concept. 🙂 But in all seroiusness, it’s great that you’re able to see and work with Emma by reflecting on yourself… it’s funny, how when we look from a different angle at a situation, we start seeing more same than different.
Thanks for the link, E. Loved reading that. Seems there are a good many of us that fall into that category. There are so many things I see in Emma that I recognize in myself, one I forgot to mention in the post was intensely sensitive to moods, vibes in a room etc. I believe Emma is so sensitive to this that she actually shuts down because it’s too much for her. And of course the myriad sensory issues and how they effect her are things I guess at a great deal of the time, but your writing has been incredibly helpful with much of my understanding and opened my eyes to appreciating those kinds of assaults better. Your “words” – http://thethirdglance.wordpress.com/2011/12/28/words/ – post was a huge help in my understanding of the degree to which sensory issues impact her life.
Excellent post Ariane!
I never get jokes! People don’t seem to enjoy having to explain them…I don’t know why. That is my attempt at a joke. Ha ha ha You do make me laugh with your long sentences and clever uses of words, I get those things.
I can relate very much to many things you share here.
I was disconnected from Daniel in many ways because I was not looking for similarities, but too busy trying to fix what I and others perceived as differences. Once, I sat down with him and really paid attention – I realized I connected with him in much more than I realized, and it helped lead us into a relationship that had not been there.
Finding our common ground led to me being able to explain what and why he did things, which helped improve family relationships and connections. He began to feel understood and once that started happening, he began to show great progress in other areas. Also, by looking and connecting to him it helped (continues to help) me get connected with myself. I had no idea how far removed I was from my inner being, or all of the things I disconnected from to survive in this world.
Eating disorders, self-injury, obsessive tendencies, sensory issues, to share a few were part of my hidden (confusing) life that I had no idea caused me so much pain, and damage. All of it unfolded seeking to understand my son.
Thank you for sharing, and being so willing to be vulnerable and giving such wonderful insight!
“People don’t seem to enjoy having to explain them…I don’t know why.” That was funny, made me laugh! But what do you mean my “long sentences”…? Kidding : )
It’s good to know I’m not alone in all of this. Whew!
Great post and an awesome way to turn things around! We can gain so much more perspective when looking at things this way! It reminds me of an issue we were having with Brett at school. He was being quite silly while eating his lunch in the cafeteria…touching people, sticking his foot out to bump in to them while they walked by…just goofy things. We racked our brains trying to figure out ways to stop this type of behavior…have him eat eleswhere, different time, find fidget toys….what??? His ABA senior went to school one day to observe him and she sent me an email afterward. She explained that she did see Brett doing things during lunch to capture people’s attention…..then she added….”You know, he REALLY reminds me of his Dad!” I had NEVER considered that before. My husband has the same way about him. Picks on the kids, loves to laugh, teases etc…..it never dawned on me that it could be very likely that he has his personality and just enjoys getting a rise out of people! It doesn’t ALWAYS have to be autism related or a big complex issue…it sometimes is just our traits shining through like you said. Makes sense to me!! :O)
I think being given a diagnosis, a word that I didn’t know anything about was really intimidating and so I immediately began seeking answers from “professionals” and “specialists.” Also the whole – intact child behind a haze of autism just waiting to be pulled free – didn’t help. The more I read other Autists blogs the more I identify with many autistic-like behaviors. I am convinced there is a great deal of overlap.
I love that Brett’s therapist saw your husband in him! Why wouldn’t there be both of you in him? Just as I see so much (good and not so good) tendencies in my son.
as zack has grown, i see more and more of myself in him, often makes me wonder where i would have been on the spectrum had the diagnosis been around then!
To start with i really had to work at trying to see the world from zack’s point of view, until i realised that despite him being so different to me, we weren’t that different after all!
How old is Zack?
I actually took an online AQ test – http://www.wired.com/wired/archive/9.12/aqtest.html – “Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher.” I scored 30. I don’t think these tests could possibly be accurate and this one doesn’t ask anything about sensory issues, so it’s a little like taking one of those quizzes in Cosmopolitan Magazine (is that magazine even still around?) But I think it is interesting to look at the similarities, we’ve been so trained to look at all the differences.
zack is eight. . . Some moments he acts like he’s a toddler, others i wonder when he grew up and left home! Tend to forget sometimes that he is eight and has eight year old issues too!
how do you get the squiggly creatures to show up by the names if people don’t have pictures, they’re cute 😉
Those little creatures are called avatars and it’s an option you can choose on a wordpress blog on the settings tab under discussion. I don’t like the weird grey block, so I chose the creatures, I actually think they call them “monsterID.” Yeah, I like them too.
Isn’t it strange how throughout history humans have always been afraid of anyone who is new or different? Think of the first ape-man who climbed down out of a tree, and started walking on all fours on the ground below? The tree-dwellers thought he/she was totally nuts. Or the one who started to speak making peculiar guttural noises? Or writing? All those odd signs pressed into wet clay with a stylus? What in the world could those mysterious signs mean? Even in the 5th century Augustine wrote that he was amazed to see a man sitting on the floor in the corner “reading to himself, silently”! Evidently before that time reading was a form of out-loud communication, not something one selfishly kept to oneself.
But then all those were weirdos, aliens, not us, right? Best to keep away from THEM, or ignore them, or not try to communicate with them.
Sometimes I think it’s easier to communicate with my dogs than a lot of humans I know. At least dogs are totally accepting, totally loving, loyal, forgiving, and living in the moment (Buddhists, in fact.)
Love your blog, and the wonder-filled comments it evokes. We may be weird-peculiar-different-alien, but at least we know how to love,
Mom/Granma
😉