Have you ever thought of how much information and emotion we express using our sense of touch?
Having tactile sensitivities and, these days, chemical sensitivities, touch has always been a minefield for me. I always was hungry for love and expressions of love, but my neurology is such that light touch, which comprises most of social touch, really disorganizes my nervous system. It activates my "fight or flight" response and makes me feel threatened. It took me thirty years, but I was eventually able to find a way to get around this problem.
Our body takes a lot of information in through the sensory system. Touch, vision, smell, hearing and taste inform how we experience the world. These senses do a lot to inform whether or not we feel safe in the world, or if we feel threatened. If we are taking too much information in through the senses and can't process it, we will feel overwhelmed and unsafe. So strong smells, loud music, and uncomfortable touch, among other things, will trigger a primordial, instinctual reaction from our body - "Stop! Get away! Dangerous!" is a common signal or thought left over from our survival instinct if we are getting overwhelmed by too much information from our senses. We might consciously be wondering why we are having this response, but we can't fight our own neurology.
My sense of touch is one my most sensitive senses. When I was a child, as now, I had trouble finding clothes I could wear, because of sensitivities to the way they felt on my body. The feeling of rain drives me crazy. I also shrank away from the kind of casual touch that defines and delineates love and connection in so many relationships. As a child, I shrank away from hugs and cuddling, leaving my parents presumably quite confused. I didn't shrink away from the hugs or cuddling because I was rejecting my family or other loved ones, or because I didn't care about them. Far from it. I was, however, disorganized and agitated by the feeling of sudden, momentary, light touch on my body. I expressed this agitation by trying to get away, not realizing I would cause offense to the person who offered it by rejecting it.
Not realizing, even, that people seemed to use this system of touch to communicate love and caring, whether it be through hugs, cuddling, a gentle pat on the shoulder, hugs or other forms of touch... I was so removed from it, that I had no idea. Other people took my lead and few people, including my family, ever tried to touch me or hug me over the years. On the one hand, they didn't trigger my touch sensitivities, so that was good, I suppose - but we never came up with a better way to communicate love, so I began to feel emotionally isolated without even realizing what was happening.
At the age of 30, I began to be able to articulate for the first time this deep feeling of a lack of emotional connection, not quite being able to articulate why I felt so adrift from others even when I seemed to have so many connections. I was told I was expecting too much and that no one had what I was looking for. I found, eventually, that this was not the case. I discovered that other people communicated affection through touch, and I communicated affection or all emotions through words. I discovered most people did not have a verbal language for emotions like I did, and so could not express their emotions through words like I did. This left me very isolated. They expressed affection through touch, and in the process of trying to get away from a negative physical stimuli, I had completely eschewed the language in which people express affection.
Analyzing the problem in the way I do all problems, I reflected on this. I realized that when I did try to force myself to try to hug people, some hugs actually did feel good, but others felt so bad in a very hard to describe way. Not being able to predict which would be which, I usually avoided hugging entirely. Then there was the added issue of being overwhelmed by a fragrance on someone that was not detectable from a distance but was when I was that close to them.
I pondered why hugging the woman I worked with in my volunteer position, who I liked and admired greatly, felt so bad when I liked her so much. Eventually, I realized something. She was so gentle in everything she did that it only naturally followed that her hugs would be gentle, too. I realized that gentle hugs completely disorganized my nervous system, but that the deep hugs I got occasionally seemed to calm me. I tested this out by asking her to use deep pressure when giving me a hug. I felt calm - a sense of renewal and centering - when she hugged me. I felt a brief sense of connection. It worked.
Having been fully aware of Temple Grandin and her "hug machine" which applied deep pressure squeezes and hugs to calm her down, I am not really sure why it took this long to make the connection, but it did. So far, people seem to be surprised when I tell them this, but it is a recognized truth in sensory integration therapy that deep pressure regulates a tactile-sensitive nervous system.
Just a week or so after I had figured out how to be hugged in a way that was comfortable to me, I had the first sign of how potentially important this discovery could be (or not, I don't want to put too much pressure on it, but it has potential, if I'm patient).
On a recent night, as I was falling into a familiar pattern of despair brought on by a sensory stimuli that caused my physical body sensations and emotional limbic system responses to overtake my brain and plunge me into a reality filled only with pain and the lack of ability to ever remember there existed anything but pain, and the lack of ability to remember what connection felt like.... an image flashed quickly into my brain, as I was sitting on my bed, trying to organize myself and ponder my next move. It was the image of hugging my friend at my volunteer position. It was the feeling of the hug and an all-too brief flash of the connection it had brought. It was gone in an instant, but it was still so much more than usually ever happens when I am in this mood. I had a flash of connection to someone who was not physically present. That never happens to me. That had never happened to me before in my life, at least not when I am upset. When I'm upset, I forget that all good ever existed, so emotional regulation is often difficult. Part of the reason why I always am always seeking connection and conversation when I am alone is because the feeling of connection with something outside of my own brain usually fades as soon as the conversation is over, leaving me feeling alone again, even as I hastily scribble down every last word I can remember of it to try to conjure the feeling later on.
But this time, I had a flash of connection to someone who was not physically present. Maybe, using what I know about different types of touch and researching more about it, I can start to build on that and find ways to access emotional connections that will last a little longer when they are over, and start to help me figure out how to increase my abilities for self-regulation. It seems that pain is inevitable, but maybe it is true what they say about suffering being optional.
Since I first wrote this essay a month ago, I have been able to flash more and more to the feeling of love when I am feeling off-center, and have these feelings last a little bit longer. Despite being a writer and having such a facility for words, my memory does not go to any of the words I scribble down to remember, but to the feeling of the touch of hugs certain people have been giving me lately. It seems that love transcends words, and I just needed to find a way to listen.
If you like this, please be sure to visit my other website, Accepting Asperger's. A lot of my older writing is stored here, including an editorial I once wrote for the Baltimore Sun. Click here to see it: Accepting Asperger's.
What's it really like to be a 20 something with Asperger's? On this blog, I hope to explore that question. But this blog is not just limited to an audience of people in their 20s - this is for anyone who ever wanted to know anything about autism. I plan to delve into the nature and experience of autism, and examine it from as many angles as possible. I would like to start a conversation between people with Asperger's or autism, parents of kids with autism spectrum disorders, and anyone who just wants to know more. Let's explore what autism means, together.
My goal is to start a discussion on and build a community of people affected by autism - parents and adults with ASD - so feel free to leave your two cents in the comments section of any post. If you're too shy for that, however, or want to speak to me personally, you may feel free to email me at KGoldfie@gmail.com.
Asperger's Book for Sale
Common Scents: Adventures with Autism and Chemical Sensitivity" is the story of a young woman's search for physical and emotional safety as she journeys through the mountains of the Cascades, small coastal towns on the Oregon coast, and out-of the-way towns in upstate New York. Along the way, she experiences things she would never have dreamed possible had she stayed in her Maine hometown, and begins to learn the power of human connection.
Common Scents is the story of the last three years of my life. It gives a gripping view of what it is like to experience the world as someone on the autistic spectrum, and some would say, is an entertaining travel story as well. Because of chemical sensitivities, I engaged on a three year journey for a place I could call home.
Comments from readers:
"The Asperger's element is remarkable. I feel that I understand my son better, so much better. I laughed at this part.... because I've stared at my son in the same way for the same thing." - mother of an Asperger's kid
"Your writing style is SO engaging and interesting. It brings me right into the subject and I always experience a little emotional punch towards the end. In other words, this is the third time I've teared-up reading your work. Kate, you've highlighted ALL the problems with how social skills are usually taught." - mother of ASD kid
"I stayed up entirely too late reading the first 14 pages. I can relate to so much of what you write. I really think you are expressing the true experience with MCS and autism in words that convey the experience." person with chemical sensitivity (MCS)
"Absolutely interesting, insightful and witty. You've blended together your three themes beautifully (Asperger's, MCS and travelling). It seems seamless."