Postcards From My Mind - Interpration Stage of External Sensory Processing

Postcards From My Mind: Perspectives of Asperger's Syndrome

External Sensory Processing

Interpretation stage (how one’s brain understands the information taken in)

Auditory Processing: This refers to how sound is interpreted. For students with auditory processing difficulties, they hear every word, but have difficulty gaining meaning from the sentence or cannot distinguish meaning from background noise. When I listen to my world I can hear everything just fine, but interpretation information can be difficult. I can hear the sentence, “John is coming over for dinner” but what gets processed is about 1/3 of the sentence “John over dinner”. Believe it or not, comprehending 1/3 of my environment is about all I need to get by. This processing becomes difficult sometimes in that I miss social cues or messages. During school it was a nightmare. I have this fantasy that one day schools will be based upon visual information rather then auditory. The other error that occurs is I’ve gotten so good at putting on a listening face that sometimes I forget to actually listen!
Synesthesia (cross-modal associative processing): When one sensation (such as hunger) is processed, then interpreted as another sensation (such as feeling hot), that’s synesthesia. Having discussed this processing with some of my friends with Asperger’s syndrome, I’ve come to learn that Synesthesia is quite common. Interestingly, Synesthesia is a disorder unto itself however many people with Synesthesia have a relative diagnosed on the autism spectrum – coincidence or genetics? You decide.

When someone mentions the word, “hamburger”, I literally see the color green – it has deep dimensions without having a true shape (similar to the screen saver where the shapes collapse in on itself and turns into another shape). When I hear classical music I see water fountains made of brown fieldstone with a wide beveled edge and one center spew. When I look at water I taste metal. These are just some of the sensations I experience on a daily basis.
Collapsed Sensations: When visual or auditory information “skips a beat” or “vibrates/pulses” hopping from one part of the page to another (similar to dyslexia), or looks like the world is crumbling up (like a piece of paper), this I call collapsed sensations. Auditory input, on the other hand, starts to sound garbled as if the person is speaking underwater. Many adults with autism have also described this sensation as listening to a radio that’s tuned between two stations.

Because I had significant reading difficulties, in 4th grade I spent one afternoon a week getting vision therapy at the local hospital. This was suppose to be another one of the “miracle” treatments which, in the end, did nothing. It wasn’t until 1989 that I discovered I couldn’t read at all phonetically (sounding words out)! By asking my mom and grandmother how to pronounce certain words, I had simply memorized dictionaries and encyclopedias – this is what I called reading. I literally had no idea that this was called sight-reading and not what most people did.

In the mid 90s I had decided to go back to college and on my application disclosed I had a disability. I met with the disabilities coordinator who determined my testing material was too old and I needed to get updated information. So, I opened the yellow pages to education and picked any old clinic that advertised testing. The lady completed the testing and, I guess, noticed that I was looking at the material funny and blinking a lot (which I used to do). She told me about how color can affect vision. She laid colored overlays (like colored transparencies) in front of me over a book and asked me to read a line. “How cool”, I shrilled. The words stopped dead on the page – no more moving. They stayed whole (vs. fragmented). At first I thought it was a trick. The testing lady told me these overlays came in eye glasses, too and asked if I wanted to take the Irlen test (Helen Irlen is the woman who invented these glasses). The test was rather expensive so I declined. I thought to myself I have the overlays and it’s not too difficult to use them when I’m reading. I thanked the kind lady and went on my way.

A few years later I was at a conference when I again saw the overlay people. As I walked past the booth I commented to the exhibitioner, “I use your overlays and they work great!” She smiled and I went on with my day. Later that afternoon the same woman from the booth, Helen, came up to me and asked a logical question, “If the overlays work so well, why I didn’t have the glasses?” I explained that they were too expensive. She offered to do the testing for free if people at the convention could watch, I agreed thinking nothing of it.

Helen and I went through a series of colored lenses until all of a sudden not only did reading material become clear, my world became clear. My world stopped moving and collapsing. I could also see in dimensions. Two things I noticed immediately were when I walked down stairs I could see the incline not use rule-based logic, such as looking for dark shadows to know where “down” was. The next thing I noticed was outside I look at the trees – they weren’t moving! The leaves moved in a smooth motion, not a frenetic shaking and dancing that they normally did. I took the glasses on and off and as I did it felt like I was looking a two different worlds – like a fun house with trick mirrors. As a child, when my vision would become distorted, I used to speak about the distortions. Reviewing my records it’s no wonder people thought I was hallucinating!

When I first encountered the overlays, it never occurred to me that my vision was disturbed beyond letters. I knew for years that there was something odd about my vision because at times I could see typically, then the image would jump and be distorted, but I didn’t know that other people didn’t experience their world like this, too. Gaining this knowledge generalized to my concern that perhaps there were other things that I thought were “normal” that really weren’t. If I can’t trust my vision, what can I trust?

For several years after that I wore the Irlen Lenses and eventually Irlen Contacts. For months after I originally put on the lenses, as soon as I would take them off my world would go back to chaos. One day an odd thing happened. I took off the glasses and for a brief moment my vision stayed still. It was as if I had learned to train my vision to control my environment. As the years went on I was able to hold my vision for longer and longer periods of time. Today I no longer wear the lenses and, for the most part, my vision remains pretty good.

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In 1998 a lovely gentleman, Cary Wolinsky, from National Geographic contacted me. He wanted to discuss what Scotopic Sensitivity Syndrome (the name of the vision disorder) felt like. Cary and I met several times and talked about the syndrome. He then designed a scene and took my picture. From there we went to the “lab” and I used his computer to distort the image the way I use to see. This picture was published in July 1999.

How do you processes sensory information? Please write a list of sensations that you enjoy and sensations that you are not fond of, then classify them into internal or external categories.
Mono-Channel Processing (or the inability to multi-task): Temple Grandin, an adult with autism, talks about how it is difficult for her to look and listen at the same time. She refers to this as mono-channel. Many students on the autism spectrum don’t make eye contact for this particular reason – they may comprehend everything you are saying, but may have difficulty listening and looking at you simultaneously.

I find people’s faces (along with hands) rather distracting. There are so many movements occurring simultaneously, plus the wrinkles on people’s faces, their eyebrows, and hands that tend to ever so slightly vibrate when they talk/move. Sometimes when I look at people’s faces it makes me seasick. If you have ever been seasick, you know that this is not the most advantageous time to follow a long string of directions, or a conversation for that matter!

This inability to multi-task leads to most “violations” (when something isn’t correct). As a child, I would only eat foods that had no more than 3 colors in them (OK, I confess, this is still a “rule” today!) When I look at items with many colors in them (be it clothing or food or anything else), my brain becomes confused and I start to panic. The thought of ingesting one of these violations is intolerable.
Hyper- or Hypo-Arousal: These types of arousal states occur when sensorial experiences are processed and register as abnormally low input or abnormally high input. You might have heard the term “tactile defensiveness” which refers to a type of hypersensitivity where the feedback from touch is “out of proportion” to the actual stimulus. Light touch can feel very painful. Many know what it’s like to put on an itchy wool sweater without a shirt underneath. I experience the same sensation when I sit on a chair made of non-cotton fabric with my bare skin. I also experience this same sensation with foods such as ice cream, cottage cheese, and mayonnaise. When I’ve eaten these foods I feel like my body is going to explode. Every part of my body begins to vibrate/pulsate erratically. All I want to do is scream. I could only imagine that this is what is must feel like to be trapped inside a burning building.

These hyper and hypo states are common even in typical people; we all have them. Think about the volume of the TV or stereo – how many people argue with other family members/roommates about the optimum level of loudness? For people on the autism spectrum, these sensations are simply taken to the next level. Whereas one might not like being touched lightly, for someone on the autism spectrum it might feel painful or, for me, it sends a tang of anxiety down my entire body that causes me to tense up and want to scream as if I’m on fire.

I constantly seek out movement activity (as a child appearing hyper-active in school) because this is the only time that my body felt good. Even as an infant, apparently I sought movement experiences. My mother frequently told me stories of how I was perfectly content to spend my days in my jolly jumper; a swing-like device which hung from the door allowing constant rhythmic movement. I don’t have any memories of this, but it sounds like I could enjoy it. Many people not on the spectrum have similar experiences.

As I grew up, I always sought out vestibular sensory activities such as horseback riding, tennis, skiing, swimming (which was a huge favorite), and fencing. Fencing, by the way, formally taught me to pay attention to other people’s subtle movements. As an aside, due to the complex rules and social component, I had great difficulty playing sports that were not solitary such as baseball, soccer, and hockey. Only when I was swimming my body felt what I assume is “normal”. I remember diving into the deep end of the pool loving the way my body felt as it slapped against the water. Then I would go 10 feet down touching the bottom and stay there as long as my breath would allow. The pressure of the water around my body feels as if it holds my body together. I can think when I’m underwater and I feel calm.

For a period of a year during adolescence, my tactile defensiveness (sensitivity to touch) and Obsessive-Compulsive Disorder became so unmanageable that I would simply wear surgical gloves to mute the sensations. The gloves were tight and thin allowing me to use my hands so they were practical (fortunately at that point I did not have perspective taking skills to know just how goofy this must have looked!) In my early 20s, I was participating in art therapy. Art therapy was wonderful as long as I didn’t have to touch anything. Once my art therapist noticed how odd this was, she started me on a regiment of systematic de-sensitization with paint. Systematic de-sensitization utilizes behavior modification principals. I started with just sitting near an open jar of paint, then a clean paint brush touched my skin, next a microscopic dot of paint was placed on my hand and each day this dot was painted bigger until I could tolerate the paint. Above is a picture my art therapist took of the first time I was able to tolerate large quantities of paint on me!

Every person on the autism spectrum processes sensations differently. For example, both my friend Stephen and I have difficulty with noise. Stephen does not like when sounds are too loud and is distracted by music in the background. Background music is extremely helpful for me. I seem to borrow the rhythm of the music and it seems to help me focus and organize better. When I’m in a crowded place and don’t hear music, words just sound like noise. In terms of loudness, it’s not so much the volume as the frequency, pitch, consistency of the stimulus, and amount of separate stimuli causing simultaneous static. (I actually tend to listen to the television and radio loudly, but I hate when people speak loudly – I’m not sure why this is)

For example, florescent lights were an enormous problem – the high pitched un-rhythmic frequency of them use to make it virtually impossible for me to concentrate on anything else as they are quite painful. A few years ago I took several airplane rides within a matter of one week while I had a double ear infection. On one trip my eardrums burst and I lost some of my hearing. At first I was quite upset, but in retrospect it turned out to be the best thing that could have ever happened. My sound sensitivity has decreased tremendously, opening up opportunities for me such as focusing longer at my job, being able to tolerate public places more, etc. The quality of my life has drastically improved since this accident.

Although my processing has improved somewhat I still struggle with things such as the polisher machine at the dentists office, blenders, vacuums, ambulance sirens, the fast-forward / rewind buttons on the VCR, and the worst – dental floss. The sound dental floss makes coupled with the feeling is horrible. When I stick that rope between my teeth it feels like a shock echoes through my body – as if I were hit by lightening.

The fast-forward and rewind buttons belong to what I call the “polarized stimulus” family. Polarized stimuli are items/activities that can separately cause two (polarized) types of reactions. There are some forms of stimulation that I absolutely love at times and at other times cannot tolerate. As a child I remember watching static (“bug fights” my mother’s friend use to call them) on the television for hours. Around age 15, for some unknown reason, this type of stimulation became extremely difficult for me to process. Currently, if the TV goes to static it feels like I’m pouring rubbing alcohol into an open cut.

Along similar lines, from childhood until I was 26 years old I shaved virtually all of my body hair off. I would become so over-stimulated by the body hair rubbing against my clothing or objects that I would scream several times a day. I’m slowing letting some of my body hair grow back, but aside from appropriate shaving places, my forearms are still bare. Fortunately, I’m not that hairy to begin with, so I don’t need to shave more than once a week.

As a child, the overpowering smell of seafood would send me screaming out of the room, whereas today, while I still do not take pleasure in the smell, I find it tolerable. Then there are restaurants… so many people all talking about different topics with different rates, smells, textures, that the sheer amount of non-rhythmic noise drives me crazy. Unlike fluorescent lights, restaurants are not painful, but rather create too much information to process and I wind up becoming very irritated and agitated. Ironically, the smell of laundry vents is very calming – I really don’t understand why this is.

Although I never formally participated in sensory integration therapy, sensory integration has been an integral part of my life since shortly after birth. As an infant, my mother described me as “the perfect baby”, never cried, never threw up, wasn’t fussy… little did she know that falling on the high side of the bell curve can indicate trouble as much as falling below.