I have had sensory problems my whole life. I was not diagnosed until I was an adult but I always knew there was something different about me. My senses are more acute than most; I hear sounds before others are aware of them, I see flickering lights and television screens that others are not bothered by. My prey instincts are deeply rooted and overpowering; I am terrified when making eye contact with another person. Being touched by a stranger is so intolerable it is painful. I am bothered by the feeling of polyester, rayon, rubber, many plastics and fake leather; it makes me feel sick to my stomach and I sometimes start shaking if I am forced to wear particular fabrics.

I also have mild synesthesia, which is when one sensory experience is triggered by another. For example, hearing certain words can make me experience a color and usually an accompanying strong physical reaction like pain, nausea, tingling, etc.

And yet, I grew up in a world where people expected me to be normal and behave normally. I was told that I was lying or over-exaggerating when I tried to explain the things that made me scared or uncomfortable. I have always hated being hugged, for example, but I was expected to tolerate it and then expected to pretend I enjoyed the social bonding it was supposed to invoke in me.

In order to maintain my sanity, I forced myself to ignore my body’s alarms and warning bells. I told others and myself that I was happy when I was expected to be and that things didn’t bother me if the people around me were not bothered by those same things. Like a wounded animal, I learned to put on a brave face and behave normally even when I was falling apart and unable to function inside. I lived a lie, but it was a lie that became so strong that it took several mental break downs and then years of therapy to start uncovering the truth again.

Adding to my problems was a difficulty I have found to be almost common in those who have undiagnosed Autism. Because the way I experienced the world was so different from everyone else around me, I lived in constant fear that I was going crazy and losing my grip on reality. My mother thought I was too sensitive and that I simply had to learn to toughen up. I tried hard to please her. Later I tried hard to please my peers, my teachers, and then my coworkers and bosses. I did it because I began to believe that my inadequacies were my fault and that through sheer will power I would could make myself into someone who was worthy of acceptance and love.

By the time I reached my mid twenties I had become such a good actress that everyone believed I was living a wonderful life. But there was a time bomb slowly ticking inside that was about to burst and blow away the facade.

To understand why I had and have such problems functioning in the world of non-Autistics I needed to begin to identify what my authentic responses were to the world around me. The best way to do so was to start looking at my childhood.

When I was little I felt that the world was a very scary place. I would guess that this may be true for many children. The thing that made me different was the degree to which I was constantly frightened and also the types of things that frightened me. Many children are afraid of the dark, of the boogeyman, of strangers, etc. I had many normal childhood fears but I was also afraid of many of the things that other children found normal or sometimes even pleasant.

I was afraid of light bulbs because the lights always flickered even though I was the only one who saw it. Instead, I was happiest sitting in full sunlight because it was a solid-non flickering light that washed out everything else. In fact, to this day I still love the sensation of sitting in the summer sun because it is so overwhelming that it blocks out my other senses. I often stop being able to hear annoying noises and rustlings. The omnipresent feeling of the fabric tickling my skin or constricting at my waist would usually abate.

I was afraid of the sound of the air. When it is still, it provokes a very particular sensation in me that makes me feel very hollow and like I would ring like a bell if touched. I don’t think I can fully put it into words except to say that it is highly unpleasant and almost painful. Alternately, if there is only one sound source and I’m not actively paying attention to it – one person talking, one TV playing, the sound of children outside – it becomes a constant annoyance like a feather tickling the inside of my ear. My brain then becomes unable to process other incoming sensations. During these times, I also become unable to think clearly.

I learned to combat this by either swaddling myself in an attempt to block everything out, or better yet, to create an experience similar to what the sun does; a complex enough distraction that it becomes a constant wall of sensation. I would turn on the TV, the family’s portable radio, the record player and any other thing I could find to make noise. After five or ten minutes of this I was able to get back to school work, reading, or whatever else it was I was doing.

I think the hardest types of fears for me to accept were the social ones. We as human beings are creatures that crave love and acceptance. I don’t believe Autistic people are any different. For me, the problem is simply that I cannot tolerate many of the bonding rituals most other people rely on and enjoy.

I was a finicky baby who cried through most of my first two years of life. I have very few memories prior to the age of two but I can remember early childhood experiences where I cried because someone was trying to love or sooth me. My mother was very hands on; it pains me to say that it is likely why I cried a lot as an infant simply because the stimulation of constantly being touched was probably overwhelming to me. This was certainly the case by the time I was three or four.

I remember one time crying because of some small discomfort and having my mother try and pick me up. I remember knowing that it upset her when I pushed her away. I don’t know why I have such strong intuitions about the emotional state of others since I have such a hard time reading body language. I’m usually only aware of how another person feels because of a sensation of weight in the room that increases when those around me get more and more upset. At any rate, that day, I remember that I was acutely distraught at the thought of upsetting my mother. So instead of pushing her away when she picked me up to try and comfort me I simply allowed myself to be held, although I held my body stiff and rigid from the anxiety of the experience, and cried even harder.

Over time, my mother eventually learned to swaddle me in blankets as she had when I was smaller and to keep the stroking and touching to a minimum. I could tolerate her stroking the top of my head or one hand or foot at a time. Being in physical contact with another person was only tolerable if it only involved a small portion of my body.

The fear that has caused me the most difficulty is the one that is invoked by meeting the gaze of another.

I think that this fear is brought on by two things. First, in my personal experience and in talking to others on the Autism Spectrum, I have found that many of us experience life similarly to how prey animals seem to behave. Even in dogs, meeting the gaze of another for more than a flash second is considered dominant behavior. Try making eye contact with your dog and see if it doesn’t change its body posture and look away after several seconds. Even with dominant dogs, it usually causes a change in body posture and may even provoke a response of barking or growling if the dog doesn’t know you well.

When I was a child, I liked talking to people and had moments where I was rather outgoing. Unfortunately, I usually talked to their feet, hands or was looking at something else entirely in the room while the conversation was going on. As I got older and entered grade school, it became expected that I look adults in the eye when they talked to me. There was a very dramatic change in my behavior between the age of 5 and 7. I stopped talking to people and I became more and more withdrawn. The social experiences I craved as a child were now frightening and unpleasant.

The second reason I think I am uncomfortable making eye contact with people is because I cannot read facial expressions very well. I take better ques from tone of voice and how another person’s body moves. Also, because I have sensory problems and my brain can only process one sensory system at a time if I am forced to look someone in the eyes, aside from triggering my fight or flight response, I am triggering my visual system and my auditory system is dampened or shut down. When having conversations with people, I have learned to smile and nod but I have little comprehension of what they’re saying. Before the age of 5, when I wasn’t expected to make and maintain eye contact, I could concentrate on what someone was saying by letting my brain lose its focus the visual world around me. I was therefore, a much happier, and more social child.

These basic fears and anxieties, along with many many others are still disabling to me as an adult. Trying to ignore my sensory problems and the overwhelming anxiety I carry with me created enough trauma that I became increasingly unable to function in the work world. Imagine trying to get work done when every noise in the office made you unable to focus on your work for tens of minutes or sometimes hours at a time. Imagine that every time someone would walk past your desk, your fear response would go off and you got a shot of adrenaline that coursed through your system and left you shaking and feeling queasy for many minutes afterwards. Imagine that every time someone had to come to your desk to talk to you about something work related you felt the fear of a rabbit staring into the eyes of a lion go through you and leave you weak in the knees. It soon becomes impossible to get any work done. Imagine you’ve been living your life like that, every day for more than 30 years.

When I had the most severe of my nervous break downs the walls I built up to help me behave like my friends and coworkers around me came tumbling down. I had to accept that the fears and anxieties of the little girl I had been were still there with me under all the layers of denial I’d built over them.

It has been two years since the breakdown that caused me to leave my career. Since then, many things have changed. I have been lucky enough to have a wonderful service dog named Sagan come into my life. I have a wonderful and patient husband who has allowed me to get valuable help from so many of the pacific northwest’s best Autism doctors and therapists.

I have had to learn to accept that the high profile career I thought I wanted is probably out of my reach. But learning to accept who I truly am has allowed me to reopen a world I had forgotten and to begin building a new life. In this article I focused on many of the things that have made Autism a disability. As this blog progresses, I hope that I can also share with you all the things that make my autistic mind and soul so delicately beautiful.

Thank you for allowing me to share a part of myself with you.

*note All photos, except the last one of my service dog in this article are used under the creative commons license and can be found at wikimedia.org