Monday, June 20, 2011

The Discomforting Skin

Fifteen years ago, walking around in my body was an exercise in torture.

I'm referring not only to the bullying to which I was subjected on a near-daily basis at school, or the tumultuous relationship I had with my parents at home, but to my actual physical self. This once 95-pound body that hardly seemed to exist, and over which I felt I had little to no control.

A mirror is one of the most dangerous weapons that you can give to a teenager. Every time I would come near one, it was as if someone was whispering, "I dare you, I dare you" in my ear. My breath caught in my throat, and for those few brief seconds before I would look, my heart would fill with hope that maybe, just maybe, I wouldn't hate what I saw this time.

But I always did.

Every time, it would leave me clawing at the surface of my skin, pushing against the edges of my psyche, desperate to break free. I felt trapped, imprisoned in a cell made of flesh and bone. Seeing my reflection--this grotesque image that I had absolutely no way of changing--made me furious and sickened, all at once. Being present and confident in myself was a far-off pipe dream; I was barely attached to my body, and could never hope to be aware of it.

For many individuals on the autism spectrum, there is a lack of awareness, in terms of knowing ourselves. Some of this stems from spending the first eighteen years of our lives being told who we are, how we learn, what accommodations we need. Someone else is the arbiter of our needs, and quite frequently, we never have the opportunity to discover what those are on our own.

This lack of awareness carries over to the physical. Many people on the spectrum are immersed in the pursuit of the intellectual, so our bodies simply become meaty display cases for our minds. But what happens when you don't "know" your own body? When you can't tell what it feels like when you're in pain? When your arms, legs, and other parts are just "there," but don't really mean anything to you?

For me, it meant having to ask my parents, "Do I have a fever?" or "What is this pain I'm feeling? I don't know where it's coming from" or "My [xyz body part] feels funny. What does that mean?" Relying on others to tell me about myself had become automatic, a reflex in response to what had been happening my whole life. I wasn't able to listen to my own body. I just didn't know how to do it.

As the years passed, I grew more and more comfortable in my own skin. I went to college, had a boyfriend for the first time, and in addition to this relationship, I also developed another one--with my body. Parts that had never meant anything before suddenly came alive, as if someone turned a switch and threw a brilliant spotlight on them. I began to develop, both mentally and physically, and slowly but surely, my perception of self started to shift.

I find myself now frequently standing naked in front of the mirror. Eyes which once went immediately to the places with which I was unhappy and that I deemed "flawed," now hold an even, level gaze. I don't look down or away--I look straight ahead, not seeing what I wish I could see, but instead seeing what is actually there. And liking it.

To do this takes time, and it takes being alone with yourself for a long time. I know almost right away now when I am not feeling well--the scratchiness in my throat, the tingling pain in my ear when I have an ear infection. All of my "dots"--beauty marks, moles--sprinkled across the landscape of my body. I know them. No longer am I relying on my parents or others for answers. I have looked and listened to all these inner parts of me, learned to understand what they are saying.

Now, nobody knows my body better than I do.

This is such an essential skill for individuals with Asperger's Syndrome and on the autism spectrum to have, and yet it seems to rarely be addressed. Perhaps some people think it is tied too closely to sexuality, but so what if it is? We are sexual beings, on the spectrum and neurotypical alike, and it's senseless to ignore this part of ourselves simply because it makes other people uncomfortable to talk about it.

Helping people on the spectrum learn about their bodies and how to take care of them--both inside and out--can mean the difference between someone who recognizes a physical symptom, can describe it, and is able to get appropriate intervention, versus someone who waits until they are asked if something is wrong, is unable to effectively describe it, and does not receive needed medical attention until it is too late.

Being aware of your body--not only what it does, but that it is yours, that you have autonomy over it and a responsibility to take care of it, is a big part of being a functioning adult in our society. It is one brick of many in the path that leads to having self-confidence, to individuals thriving and living independently--to looking in the mirror and seeing its reflection smile.

2 comments:

  1. Wow Amy - thanks for sharing this post. It's super helpful to me. My seven year old has Aspergers and we have major issues with trying to figure out when he's sick. We went a on plane with him a couple of weeks ago and he says 'ow, my ear popped'. Took him to the doctor to find a raging double ear infection. Did I ever feel like 'mother of the year' that day :(
    I'm going to link your site to mine if that's ok
    neurotypicalmom.com
    I look forward to future posts!

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  2. Hi NM! You are very welcome. I am so glad that this post was helpful to you with understanding your son better. Don't feel bad about what happened with the double ear infection--it doesn't make you a bad parent or anything like that. All we can do is learn to communicate better with each other--spectrumite and neurotypical alike--so that thing will go a lot better next time.

    Yes, do indeed feel free to link my site to yours! I appreciate that very much. Thank you! :)

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