I am an alien, an alien to the world, an alien to my own kind. Autism is a distinct dysfunction where even autists are differently wired, differently affected. We are bonded by a label that may or may not be appropriately applied, may or may not reflect mutual underlying issues.
I am a sensory dysfunctional autist. To see me is to see the outer trappings of a retarded individual, yet my mind is alert and intelligent. My body’s senses do not operate correctly. At their worst they precluded me from functioning at all.
At the start, I was a single modal child. “Single modal” is my mom’s term. What it means is that my senses do not work together. Neither, when I was a child, did they process correctly alone.
To see was not to see. To hear was not to hear. Feeling did not exist for me at all. . I could visually process form but not the identity of objects. I could hear sounds, but they were not directional at first so I had no idea what was making them. Something as simple as seeing and hearing at the same time was impossible for me. As a very young child the world held no meaning for me at all. I had little motivation to learn when nothing made sense. I lived a mind-only existence, my body a faulty transmitter of false information.
In dealing with a single modal child you have to understand their meaningful sensory input in substantially narrowed. I started with just one sense intact and that was smell. I can identify most anything by smell. People and objects all have smell. It is smell I used to recognize people. I would sniff my mom to calm myself down or use my own body smell to mask those I didn't like. Sniffing people's hair was also a large stim for me... and old people. I love the smell of their skin. When young I could get away with it because I would kiss them at the same time. I am not so keen on smell anymore but i still notice it quite a bit. If someone asks me about feel, it is smell that I recall.
I already told you where I started with my tactile sense. Even now it is largely useless for most things. Mom says I lack modulation feedback, but it is much more than that. What I feel is off too. My touch is limited to points. Things are either smooth or edges. No other textures exist for me. What is the difference between fur, sponge and sandpaper? It is all just flat to me. That is as much as I can discriminate about them. What is hot or cold? I sweat in heat, but I do not feel it as a temperature. And what is gentle or rough? Gentle I try to gauge by eye, but I don't feel it. How many times have I broken toys or furniture for having been too strong in my motor initiations?
Mine was an object based existence. To move, I aimed myself at things. How different it is to be able to move with yourself as a start point. To move as myself has opened up the world for/to me. Mine was an object based existence; now it is a me based existence. I am now the center of my world instead of being lost all the time in it. Lost, you can not get your bearings. As myself I can act with purpose to do things on my own. How to do them, it is another issue for me. Orientation of myself and things in space is a continuing problem, not because I don’t know I exist now, but because it is me in relationship to something else. I still need to figure it out. It becomes even harder when it is me in relation to something in relation to something else, orienting a piece within a puzzle for example. I am still very weak in it. It is a lesson best learned in two pieces. Matching to color parquetry would teach me, but the program was stopped before I found my body as self. I am not the best student but I know my failings. If others knew, I think I would have learned a lot more a lot sooner.
At some point I started to see, but not like I do now. Colors were shapes, not things. A stream of colors was my plastic chain. I would twirl it and watch the kaleidoscope turn round, my lights intermingling with the colored tangle of rope. I could see, but not to make sense of what I was looking at. Sight was about movement and flow, not meaning. I would dart about matching the feel of what I saw.
And then I started to hear. Again, not like I do now. My first memory is my mother’s voice softly singing in my ear. It was a sweet relaxing sound, rhythmic, repeating. I don’t know what the words were, but it still spoke of love. I loved that sound. And then there was water; oh, how it excited me. It was a stream, I think. Gibberish too, only without meaning, so I understood I didn’t have to try to interpret it. I could sit and hear its rhythm of motion.
I tried to match the sights to sound. When I could see I could not hear, so it was a big guessing game. My mother’s sound I knew first. Sometimes I got sounds wrong. Once I thought a bird was sounded like an airplane. I thought it was easy to tell at first because of the sounds direction. Only later did I come to realize birds make no sound in flight.
All sound is a good thing for me. I love the uniqueness of sound, no two the same. It speaks to me without the need for understanding. Cracking or breaking noises I like best. It speaks to our human frailty as a creation temporary in this form. I remember getting lost in sound. I would just let the sounds take over and I would melt away into them. When I was young I could do that – isolate myself to a single sense. At first, it was not a matter of choice. My senses would cut in and out on their own whenever they wanted. One moment I’d be seeing, the next I’d be blind to visual meaning. Always it was a surprise to know how I had learned something. To call it learning is a bad description. Even when I knew what was wanted I could not use my other sense to pick. Mom would drill me relentlessly in Lovaas, it is called, but I could not hear what I was looking at or see what I was hearing. I learned to guess at answers, sometimes being rewarded, for what I never knew. Let me say Lovaas may be a good teaching mechanism for some, but not for the single modal child I was. Lovaas taught me failure not success. It took an anxious child and multiplied his fears to overwhelming.
Sound is my strongest sense. My ears hear more than yours, even more before the accident. Your whisper is a full blown shout to me. I hear across rooms and walls all the time. My world is often loaded with garbled noises. What to pay attention to? It is a problem. I can discriminate tones. Let me say my mom is all tones. You can tell her mood, anger or love, by her tone. I would be lost for meaning without tone. How would you know about emotion through sound without it? Not that tone helps with attention, but I know the sound of Mom’s voice. I can tune in to that sound quite effectively now. Voices are a lot easier than when I started.
In the beginning, all sound was just background noise without meaning. In the beginning, I thought all sound indicated life. Death was not something I anticipated. Even my string lived in my mind. It moved on its own motor so I thought it lived like I did. Good thing I figured that one out. It was a shock to learn all my friends were not alive, but objects. Conceptualization is a process just like sight, just a different kind of sight. My intellect is there, but my body is still the teacher. So many misunderstandings I had. Reality is tied to experience and my experience was senses that provided incomplete and false information. I am not stupid, but some of what I believed sounds stupid.
In growing, I learned the best I could with what I had. I made up games to remember things. I learned to link things together in mind-bits. That is how I had to think. Answers needed questions. Like a huge game of Jeopardy my life was. Neurotypicals have a habit of asking a question within a question. Polite no’s don’t work in answer. A question first implies the question “will you answer?”. I say no to answering the question and you think no is the answer to the question. It used to get me in trouble all the time. There are lots of misunderstandings in word play.
My mind does not organize like yours. You go from general to specific. I go from specific to general. Who decides what is the attentional component of something? At times the parts are more important than the whole. Very detective like I am noticing small things, unimportant to you, imperative to me. My need is to move. I use cues to move. Mom, I know her heartbeat. I just move to it sometimes, a steady beat it is. I bet you don’t even notice it. To feel it is easy through her skin. I can feel motor. Her finger, it speaks to me to write. The beat is a tiny cue to start the movement toward the keys. I can type easy with mom’s finger in hand. To type on my own I have to find my own heart beat. Get excited and it is too fast to use. Only now I try to find other cues to use. Starting and stopping my motor movement is hard. It is the story of my life figuring out little tricks to use. Cues are the difference between functioning and existing.
I am a functioning brain in a dysfunctional body. I am not inclined to stay that way but my body is not my own. It is God’s creation for God’s purpose. He knows better than me what is required for his work. I trust him to not allow me to suffer for no good reason. He has lead me to stand with a foot in both worlds for a reason. I am an autist, but I am also a believer. It colors my experience every bit as much as my other senses. For those who feel his presence there is no fear of autism. My world was a safe haven not a prison. Others may experience it differently. The fear is what drives you one way or the other. In the right circumstances it should be love not fear that drives, but a love relationship is hard to develop. Lisa did it with me. My mom drove me to work through sheer terror, but Lisa did it through love. I understand why my mom did what she did, but it was not the best approach. To gravitate toward love is better than to act out of fear. To fear is universal, but not as the autist fears. To feel is a whole other experience: delayed, as a tidal wave, blind intensity of emotion, emotions that make no sense or that out distance the act they are reflective of. For me, my emotion is delayed. Its intensity hides its message content. To feel as an emotion puts me into overload, the feeling larger than the act in importance. To not get a soda reduces me to tears. Easier it is to turn emotion off and respond based on trusted others. Living in the world requires choices. For me the choice is to function in my autistic form as best I can; life in the world, but not of it, life as an autistic alien.