Postcards From My Mind: Perspectives of Asperger's Syndrome

Internal Sensory Processing

As you are reading this line, your reptilian brain is automatically monitoring your blood flow, body temperature, respiration, arousal, and pain level. In all of us we have an internal method of processing sensation. For many people with sensory processing disorders, they may have difficulty keeping “in-check” these autonomic functions. There are many people with sensory processing disorders whose natural body temperature is higher or lower then 98.6 (or who perceive it to be), who have severe sleep disorders, or who don’t feel pain at all or feel pain when they are lightly touched. When a person doesn’t have an “internal” regulator, s/he will often look for external ways to regulate his/her insides. When people on the spectrum attempt to regulate their own bodies, neurologically typical people (NT’s) call it self-stimulatory behavior, because self-stimulatory behavior provides input to help regulate internal states.

My internal processing is much more disturbing and disorienting than my external processing. Externally I have coping skills – if a siren is too loud, I can cover my ears. Internally, I feel as if I have no control over my sensory processing. If my heart is racing, I have difficulty calming it down. If my skin is crawling, I have not yet found the solution to this disturbance. Mostly, I need to ride out these sensations.

I have just spent the past 2 ½ weeks in agonizing distress because my skin felt so horrible all the time. Remember the last time you saw an ant pile where dozens of ants were frantically crawling around one piece of food? For the past 2 ½ weeks in this heightened state, day and night I felt like little critters where crawling up and down my body – sometimes fast and sometimes slow. Trying to scratch my skin only leads to temporary relief (and often bleeding). Two days ago in the middle of the afternoon it was as if the exterminator came and within a few hours the “bugs” were gone; this sensation left as fast as it came. The most distressing part is I can’t predict when this sensation will come, how long it will stay, when it will leave, or, the worst part, why it came in the first place.

I was 7 years old when my family and I came from the movie theatre where Saturday Night Fever had just been released. As we were driving across the Verazano Narrows Bridge which connects Brooklyn to Staten Island (my all time favorite bridge), I decided to declare my independence by taking off my undershirt and throwing it out the window. I remember hearing the rippling of the wind against the glass and the sucking noise as I said goodbye to my white Hanes undershirt. From then on I was not going to be constricted by layers of clothing anymore. My mother and I fought for years about dressing. Finally we came to a compromise: she would put my coat, mittens, hat, and socks on in the morning and kiss me goodbye. I would walk out the door and take off my coat, mittens, hat, and socks leaving them in the bushes. While living in New England, I would wear shorts and no socks all winter long. For some reason, hot and cold don’t seem to register in me as they do in other people.

Sometimes I feel cold and hot and I’m not sure why that is. When I’m hot (which seems to have nothing to do with the actual temperature outside) I’m miserable. I’m so cranky and can’t seem to function very well. Feeling hot preoccupies all my thoughts and I will peseverate on it until I’m no longer hot. I have no idea why this is.

In the autism spectrum population the nervous system is unable to accommodate and be flexible to change. Internally, the modulation and regulation systems are faulty, not allowing for change to be adapted to. When I was hungry, thirsty, needed to go to the bathroom, hot, cold, tired, excited, angry, frustrated, or anxious, they all registered as the same signal – something has changed – but for a long time I never knew what this something was. When this “something” happened I would become extremely agitated. My body didn’t feel good and that was all I knew. When my mother would ask what’s wrong I couldn’t answer. It’s not that I didn’t want her to fix it – I simply didn’t know.

My mom told me this story about how I needed to be in pre-school, but they would only take children who were toilet trained (which I wasn’t). My mother told them I was toilet trained and sent me in underwear. Everyday I would go out to recess and urinate in my clothes while rocking back and forth on the red and white rocking horse. I remember sitting in the bus on the way home and smelling horribly. No wonder people didn’t want to be my friend! By the time I was 8 years old I stopped having accidents. It was really difficult up until then when teachers would tell me in that sickly sweet voice, “Why didn’t you just tell me you had to go to the bathroom?” As if I plotted to pee in my pants and was hiding this vital piece of information from them! I just didn’t get the “need-to-pee” signal.

 

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