Below are some writings I have done for conferences and magazines on my Experiences with Autism and how it has actually been a beautiful part of my Life as an artist and how I have worked with the difficult sides. Enjoy
It may come as a surprise to some but I was diagnosed with Autism at the age of three, and re-diagnosed at seven and again professionally confirmed at thirty-three. Yet I have come out of my shell with much inner work, luck and amazing helpers. I now have a unique ability to communicate that many people with autism do not. My own experiences have led me to develop ways of coping using sensory stimulation which are at once uniquely my own and yet very similar to the techniques utilized in such therapies as Snoezelen. All the music you have heard on this site at its roots was created for my own self soothing and healing which has led me to my career as an international recording artist. I am now passionate about how I can use the skills I have learned coming out of my own shell and keeping myself calm with my music, photography and other ‘useful stims’ and soothing activities. I have learned to live with autism rather than despite it and now it’s actually helped me in my artistic career as much as it has hindered me in my daily life.
Autism – My Sensory Experience
by Michael Moon
I was diagnosed with autism at 3 by a psychologist at the Adlarian society because of specific traits that were there since birth. I didn’t want to be held as an infant, in fact I continually arched out of my mothers arms from the moment she first held me at the hospital all the way through infancy (and I still habitually recoil from touch even though I’ve grown to like it). My mother remembers me watching my brother hug her with great joy and then trying to copy all the actions he did by running up and hugging her but I was ‘stiff as a board’ and would step back perplexed as to what the joy and fuss was about. I simply could not ‘get it’. Any loud noise startled me and I’d freak out, crying intensely for hours and hours. Any changes would disturb me and I’d dart back and forth on tiptoe. If a picture were moved I would run around the room on tiptoe and keep going back to that wall where the picture used to be and touch it. I’d spin around a lot. I wouldn’t stop nursing for hours at a time until my mom was in pain. I would cry and cry all the time. Any noise or movement would wake me and I couldn’t fall back asleep. My mother didn’t realize these things were that unusual for I was the first born, and as it turns out she has many symptoms of Asperger’s Syndrome herself.
It was when my brother was born (I was 2) that my mother realized there was something very odd about me. Her neighbor had a severely autistic child and mentioned my behavior was very similar. I was having great difficulty in junior kindergarten interacting with the other children and the teachers there recommended my mother take me to the Adlarian society to be tested. There they observed me for hours at play with other kids and noticed many behaviors that confirmed the autistic diagnosis. Some examples were: me trying to make friends by walking up to a peer while they were drawing and grab their pen, finish the drawing and then look up and smile as if I’d made a friend. Or I’d outright destroy their project and then proceed to redo it my way, all with a casual attitude as if that was the way to introduce myself to a new friend. I was put in the Powell Brown Nursery School for emotionally disturbed children on the recommendation of the Adlarian Doctor. I was there for a few years and when I left my mother was told I would have no problem getting into a regular school because my IQ was extremely high but that I would never be able to function as an adult in the world. My mom was very supportive and yet naïve to all this. She didn’t let any of this phase her and she never asked about my diagnosis or thought of me as permanently different. She was determined I would make it in the world and proceeded to put me through regular school with an immense amount of help from her (she was a high school math and science teacher) and special education classes. We even moved houses so as she could get me into schools that had good Special Ed programs. She also intuitively did some things now mentioned as helpful to autism, such as, forcing me to sit on her knee and be held everyday. Each day she would hold me even though I would panic and squirm and try to get away, and tell me over and over “daddy loves you, mommy loves you, it’s ok.” Again at seven another doctor diagnosed me as ‘borderline’ or ‘high functioning’ autism but my mother felt I was doing fine and pretty much ignored it. It was only in the past few years that I became aware of these diagnoses.
I have lived with disabilities all my adult life when as a teenager I got sick and never recovered and was diagnosed with chronic fatigue immune dysfunction syndrome (CFIDS). It wasn’t until a friend of my mom’s daughter was diagnosed with aspergers syndrome and the symptoms seemed very similar to mine that I began to realize that autism might still be with me. I began researching Aspergers Syndrome on the Internet and found the symptoms to match mine exactly. In 2004 I went to see Dr Jefferies at the Clark Center for Mental Health who is a local specialist in Aspergers. Dr Jefferies diagnosed me with high functioning autism, citing the fact that I had clear signs of autism from the moment I was born.
When I was in school I was extremely good at math science and physical geography, which didn’t surprise anyone since both my parents were research chemists. I was terrible at all the languages though and any course that stresses language such as history. I loved art but dropped it because the marking didn’t make sense and refused to take music, even though I was tested and told I’d be good at it, because I felt it wasn’t practical. To my surprise, after having to drop out of University where I was studying Landscape Architecture, because I was sick, I ended up becoming a musician! But all I do seems to be, at its root, mathematical, music and astrology are mathematically based. Yet they both attempt at describing the indescribable and ephemeral through a detailed mathematical system that can be figured out.
Here are some of my experiences in life as it may relate to my autism.
I feel soothed by constant even intense sense stimulation as long as it is under my control and or constant. I think because of this, I have made it my life work to create music that generates this feeling of consistency for me. I have recorded 4 CD’s of music which are designed to create a soothing atmosphere by masking unpleasant or uncontrolled sounds from the environment with very consistent yet subtlety changing sound designed to sooth, relax and ‘en-trance’. People who hear the music for the first time often comment on the multi-layered complexity in the music which is very relaxing and yet also grabs the attention of the listener in an almost trance like way. This is my intention to create a sensory experience which the listener can get lost inside and forget the disturbing sensations and thoughts from the outer world.
Nature sounds and images such as clouds or ripples on a lake, which are constant, yet changing, especially sooth me. Emotional stimulation, even pleasant emotions but especially challenging emotions such as anger and even such things as concern cause great distress and often I find myself causing controlled physical pain to myself in order to deal with the emotions. As an example American humor which is based on tension and release, difficult situations happening to a character, cause me great distress and I find my body goes into adrenal stress and turns ice cold during most movies. By contrast British humor which generally is more direct and silly is much easier to watch. But in general I get no enjoyment out of watching TV at all; I find it incredibly stressful. Even movies I love and have seen before are physically challenging for me to watch. My body goes into stress overload and turns ice cold and shakes uncontrollably to the point that girlfriends don’t want me close. Sometimes a movie can effect me so deeply that I snap and my emotions get triggered at such a deep level that it’s out of control and violent. I’ve found myself wanting to smash the TV many times in rage at a character’s situation. On the other hand, science, documentaries, videos, and shows and books with no emotional content bring me great pleasure. I love a good story but the unpleasant response happens in my body.
I have become an expert at astrology because of endless enjoyable hours reading dense technical books on the subject. I find it very relaxing because I can put together stories of the endless different planet, sign and aspect combinations in my mind with no emotional content to freak me out. I have also realized that astrology enables me to connect deeply with another person where they feel I touch them emotionally yet I don’t have to look at them or feel anything. It’s a purely mathematical formula yet they feel understood and that makes me happy because though I love to spend most of my time alone I do love to connect with others.
I have naturally created a living environment in my home identical to a ‘Snoezelen’ room. I had no idea that it was so directly helping me I just put together what made me feel happy comforted and relaxed. I rarely even notice the beauty I’ve created though, because when I’m thinking or doing something my sense input seems to disappear. It still seems to have a general effect of relaxing and soothing me though. In stressful moments I can focus on a light or pattern and all else disappears for a moment.
This mono-sense thing is classic to autism and I find it helps me immeasurably when I’m focused on one thing like composing music for hours or days at a time. But often what happens is that there is so much stimulation and input coming in from different directions constantly that my brain flips from one focus to the next never being able to rest on one thing for long. It is so frustrating because I feel like I’m missing out on so much of life. When young I was diagnosed with ADHD and hyperactivity, I think due to this.
If I go for a walk in the forest with my girlfriend and she is talking, I may as well be at home for I’ve missed the trees and the sounds; all I experience is her voice. If I notice the beauty around me I miss everything she said as I was focussing on the forest sights. So often I go on walks alone, but even then I find while walking I’m missing a lot of the forest. So I stop and enjoy a beautiful tree, but then find I’m missing the sounds and begin to immerse myself in the sounds of the birds and the leaves and even though my eyes are open I literally can not see the tree, my vision is blank. Then I flash back to the tree without planning to and it snaps me out of the trance I was in listening to the sounds. And so it goes. Often if I want to hear something I close my eyes or I look at nothing and my vision goes blank. This can work for me, for when I go into that trance like state where everything else disappears the beauty I experience is profound. I hear sounds most people don’t hear and see patterns shapes and colors most people don’t. There is such sensitivity to sensual stimulation and the detail within it. For instance I was walking with my friend and I stopped to look at a fountain. After about a minute she asked to get moving I asked to stay and she got impatient. I said can’t you see the patterns in the water isn’t it beautiful? She said it’s a fountain it’s nice. It turned out all she could see was the fountain; she’d taken it in and was ready to move on to the next sight. I hadn’t finished looking at the fountain yet because, to my vision, the fountain was a collection of dancing interlocking patterns that each needed attention. Though it took me much longer to take in that fountain I realized the richness I experienced was so much deeper than most people ever see. I began showing her the textures in the water, the way you could see the individual water drops held in mid air sparkling in the light, the unusual colors blended in the pool… Endless vignettes that to me were huge and visceral and to her were just a fountain. Even though I pointed them out to her and she understood a bit more about my unique perception I could tell she could not experience what I was experiencing and I could not experience what she was seeing. The frustration is that everything seems to take me longer and I often miss the big picture. On the other hand what I experience in something as simple as a fountain can be ecstatic and moving if I surrender to my way of seeing and take the time I need. This beauty I experience is often what inspires me to create art and music. In fact much of my music and art is an attempt to translate the beauty I find in nature so as others can get what I hear and see. Not only is it a passion to pass on the insight but a desire to be met and understood because it can feel quite lonely inside.
This comes out in conversation too. I’m often accused of not looking at the other person, and it’s true. Especially in an emotionally charged conversation I cannot communicate and look at the other I lose all train of thought and feeling if I do. Even in casual banter I seem to only naturally look at the other when they are talking, when it’s my turn to speak I look to the side, especially if I’m thinking about what to say. I also find I can be quite quiet in a group conversation. If others are talking I get ideas of things I want to say but if I continue to focus on the conversation the ideas disappear. I have to space out in order to keep the ideas or sometimes without realizing it I can blurt into a conversation interrupting another unknowingly because I was so lost in my world with the idea that the conversation stimulated I forgot there was a conversation going on. When I do have something to share, often a philosophical idea or teaching I can go on for a long time without realizing it. If I get interrupted I can lose complete train of thought and have no idea what I was talking about. Often at parties people are fascinated with what I have to share but I’ve realized I don’t feel like I really ever connect with others. It’s like a mono channel going out, or in, and I feel lost in the middle somewhere. Too much stimulation, especially emotional, can trigger an overload and I space out completely. Unable to feel or think I sink inside into an almost catatonic state.
Anything sudden or unexpected can throw me for a loop, from a sudden sound to changes in plans. I seem to need time to process things including words before speaking. A change in plans, even to something I ultimately prefer can upset me and I can get frustrated, snappy and panicky for no reason. After having sometime to think about the new plan for a bit I then get focused on that and if it gets changed back or again I can get very upset.
One thing that seems to relax me is counting. To quickly see how many trees on the horizon or one of my favorites is to count up as instantly as possible the numbers on license plates. Also fiddling with things around me so as they are all lined up or in order can occupy large amounts of time without me realizing it. Intense physical pressure can sooth me. So can causing myself controlled pain by digging my nails into my skin or pulling out body hair one by one. I especially do this when I’m in an emotionally based conversation.
One thing those around me and I have noticed, is that I have a special connection to animals and children. They seem to feel very comfortable around me. In fact people in general seem to. I constantly get people saying how relaxing I am to be around and my energy is very soothing. I always feel confused by this because I feel so uncomfortable and stressed out inside. Especially around other people!
I love to be tucked in and hold people and things tight, even though I don’t generally like to be touched.
I noticed that according to others standards I am very emotionally detached. I do feel a lot but my feeling seems to be completely internal, and usually comes out in thought forms rather than pure emotion. For instance someone might ask ‘did you miss me?’ and I freeze and get scared because I have no idea how to respond. In truth I didn’t miss them, in fact I didn’t even notice I should feel anything about it, I was just doing my thing. When I’m with someone I’m with them, when I’m not I’m not. This, when it was not understood or conscious on my part has gotten me into a lot of emotional trouble, and that kind of emotion coming at me from another is deeply uncomfortable. Because of this I’ve learned to just say ‘I miss you’, and other such social cues, but really I don’t understand what they mean. Though I know what to do now I still find it very hard for it feels like I’m lying and that is very hard for me to do and I get very uncomfortable and often just don’t say anything because I get overwhelmed and shut down.
The reason I know I haven’t understood normal emotions such as missing someone can be illustrated by a recent experience. I was away up north and as I looked at the stars I saw the plieadies. The plieadies are a constellation of seven stars at the same degree of arc as the sun was when my girlfriend was born. This made me think of her and how she has 7 freckles on her neck shaped like the Plieadies. This got me thinking of how difficult things were in her life at that time and how alone she must feel, and how sweet she is to me when she thinks I’m sad because I look down at the ground all the time. Then all of a sudden I felt a huge wave of emotion come over me and I felt like I was drowning. I suddenly felt how alone she must be feeling and for the first time ever I actually wanted to reach out and phone her rather than call because I hadn’t in a while and it is the thing to do. I realized in that moment that is how she feels all day every day, empathy, emotional understanding, an immediate flow of emotion, no wonder she always calls and says she misses me. I never understood this strange phenomenon. It just felt like some sick sentimentality since I’d never really felt it before. What stuck me about this was how much of the color of life I can’t easily experience and share but how I did end up accessing it. I was able to generate a feeling of emotional empathy by a series of thought processes that brought me into a deep understanding of what someone is possibly feeling. This eventually, (it was about a 20 minute process) brought me in contact to something in me that could feel incredibly deeply. It seems that when I do experience the emotion it is so huge and overwhelming that I drown, or get totally lost in it and I don’t know what to do or how to function. (I don’t know whether this is a part of autism to feel so intensely sometimes, or just when I break through the barrier of the autism) Usually I just picture what another might be feeling and figure if they are going through that experience then that must mean they would feel a certain way I’ve learned over time and I react accordingly, in a way that seems right. This works some of the time but often I guess others emotions completely wrong and it is often very confusing and frustrating for me and those close to me.
I spend so much of my life struggling to guess what another might be feeling. I have become quite good at it but it can be exhausting not being in a natural flow and rapport with others so much of the time. It’s especially hard when it comes to ‘irrational’, ‘intense’ emotional circumstances. I have such difficulty knowing where emotional explosions come from and what they are about. They are so intense and scary to me that I will do anything to avoid them. When I experience the intense emotions of others I very often get physically sick afterward. I think because it is so hard and exhausting to my body. It’s exhausting because for one I am spending so much energy trying to figure out why they are mad and how to respond in order to make it stop. And two because the intensity of the emotion is like an earthquake or tidal wave completely taking over my experience in such an intense way as to leave me in a state of shock.
When I’m doing something, I’m doing it. I can focus for hours, even days at a time on something I’m involved with. Yet if I’m pulled out of it I can feel lost and completely unfocused. I need to structure my life in big sections. For a few days or weeks I’ll focus on writing music then for a few days or weeks I’ll focus on recording music. Then I’ll spend a few days dealing with day to day stuff like shopping and eating healthy, excercise, etc. I can be so focused on a project I’ll forget to eat or sleep on a continual basis. I have to force myself to be aware of my body’s needs and like with the emotions I have to just go through the motions in a perfunctory way in order to survive. If I’m working I’m just not hungry or tired and will never feel that I am until my body simply can’t function anymore. There is such a deep disconnect inside that even when I stop to eat I don’t feel the hunger I just do it because I know I have to.
All these perceptions and experiences of life, although difficult in day to day ‘normal’ activities seem to give me a profound creative and artistic connection. I can focus for hours on my music and art with incredible patience and stubborn obsession. I feel so much inside yet on a continual basis can not seem to communicate that experience to others directly so I resort to music, song and art. I see and hear so differently than the average person it seems, and I crave to share the experience, so I create with the intention of evoking the experience I feel of life, in others. I have such a need to sooth myself from the discomfort I feel in the world that I need to create the perfect sensual environments with sound and color that can sooth me in the way I need to be soothed. I therefore create the music I want to hear to relax me. I experience things in such intricate patterns, which then help me dissect the sounds and colors of the world into little windows called art which help people experience the world around them in a new way. This is how I find being autistic is very in line with being artistic and can be a blessing in disguise.