Module I: Description of Sensory and Motor Problems in Asperger’s Syndrome and Impact on Function

Exercise 4:

Interview With Alex

Q. Have you ever been bothered by sensory input?

Yes. I think this manifests in a variety of different ways. One of them is sensitivity to light and to sound, anything that is an alternating current. I thing one of the common mistakes people make is to think that it is the loudness of sounds that bothers me but it’s more the frequency of sounds - like the dentist drill or vacuum cleaners or the noise made by florescent lights. I never turn on the florescent lights in my office. Police lights also bother me, like the strobbing of the lights.

Q. How about the sense of touch?

That has actually gotten much better over the years. It is still light touch that bothers me but it used to bother me all the time and now it just when I’m having a bad sensory day

Q. Do you know what makes a “bad sensory day”?

I think it is when I’m exposed repeatedly to offensive sensory stimuli, like being stuck behind an ambulance with lights going and the siren going or if I have to sit in a meeting in a fabric chair. I can’t stand fabric chairs so that can be kind of a nightmare. If I don’t get enough sleep, I can wake up in the morning and just be in a poor mood. If I’m very anxious this does not make sensory input more painful or uncomfortable. I just don’t have as much tolerance. It also is cumulative. If I've had a good morning and then have to sit in a meeting for a couple of hours under florescent lights it will be OK. But if I've had a meeting in the morning under florescent lights and then have another one latter under florescent lights, I have no more tolerance. So I get kind of irritated, if that makes any sense.

Q. Do you have problems with smell?

Yes, a lot. I think it’s more that I’m very attuned to smells. A big clash of smells, like the perfume in a department store, that really bugs me. If it’s a single smell that’s OK. Or if there is a clash of food smells that can be a problem. I’m real sensitive to smell. My parents had the most trouble with me smelling my food. Its like if I could smell it I could understand it. When I was at home, it was not such a big deal but my parents had to keep reminding me not to smell my food when I was in public or at someone else’s home. I don’t know how you can know if you like something if you can’t smell it.

Q. Do you have any craving or intolerance to movement?

When I was a kid I did, but in the last five years my sensory system has really changed for the better. There are still things that I have a preference for, but not more than any one else I think. When I was younger, I was in constant movement. I loved spinning and swinging. I loved riding my bike down hills. When I was in the car I would stick my head out the window to feel the wind. I loved riding in the car, actually I still do. Any thing like that including swimming. But I think swimming was more for the pressure.

Q. Did you ever seek out deep pressure?

Absolutely. I used to love going underneath my mattress and the box spring. That was one of my favorite places to be. Also one of the things that I used to do when I was a kid was to take duck tape and tape my arms, legs, and torso so that it would feel better. This did not go over very well when I was changing for gym class! I was made fun of for that. But it felt really good. It hurt when it came off, but it felt good when going on.

Q. Were there clothes that also help you feel better?

When I was a kid I used to wear a bathing suit all the time because I liked the way it felt, but I don’t think I know what I was doing. With the duck tape I know. It felt pretty good, but it really hurt when it came of!

Q. Do you think you experience pain differently from others?

Yes I think so. When we recently moved into this new office suit, I dropped something on my foot and someone said “Oh I bet that hurt”. I know I’m supposed to say yes because you look really stupid if you say no. I don’t think I feel pain as much as other people do. Dull pain I can feel, like the problem I had with my knee, but not sharp or sudden pain. I’ll have a bruise or be bleeding and will not know where it came from. Dull or more chronic pain, like a headache, does hurt.

Q Do you have any stories of how sensory difficulties have gotten in your way?

Absolutely. One of the things I had difficulty with was wearing clothes. There were only certain clothes that I would wear. I hated the tags in clothes. I would turn the clothes inside out because I couldn’t tolerate the tags. The people down the street used to call me “inside out”. There was also an incident I remember when I threw a cafeteria tray. There was a cafeteria meal that was pretty disgusting. It was in one of those institutional trays were the mash potatoes had leaked into the meat. This was a commingling of food that I could just not stand. So I just threw the tray. There are some things that I craved when I was little that I would find offensive today, like watching static on TV. Now that drives my ears crazy.

Q. Were there situations in school were your sensory problems caused you difficulty?

I had a lot of trouble in the cafeteria. It was in the basement and had cinder block walls. It was horrible and I could not tolerate staying in that cafeteria. I came up with a great idea that if you got in trouble right before lunch and recess you when to the principal's office instead of the cafeteria. This worked out really well so I would intentionally get in trouble. Probably the way sensory problems interfered the most was that I preferred to play with sensory things rather then people. It did not seem like it interfered at the time but in retrospect it did.

Q. How would you describe your motor skills as a child?

It’s kind of interesting. It doesn’t make very good sense to me. I always had very good balance, like incredible balance. But when playing sports, I was very clumsy and awkward. When I was a kid, I can remember going outside my window and walking on the ledge and I never fell. I loved that feeling. Or walking on tree limbs and not falling. I loved that feeling too. But when playing sports I used to walk into walls. It was just a disaster. I think it had something to do with a divided attention, having to think and be coordinated at the same time.

Q. How about writing?

I hated writing, hated, hated writing! I still hate to manually write things.

Q Was it hard learning to write?

I don’t remember learning to write. I can remember all my teachers asked me to print because they could not read my writing. Sometimes I can’t even read my writing. It’s physically hard to do. But I don’t’ know if it is because I wrote with my left hand and was then made to write with my right and then back to my left. I didn’t hold my pencil correctly. I don’t know if some of that played into it as well. But writing just doesn’t make sense to me. Thinking in pictures makes sense. Drawing is easy. Writing I find is difficult. I think I learned to type when I was in second or third grade. It just made sense to me. You see an “A” and you hit an “A”. Writing just seemed cumbersome.

Q. Are there things that I have not asked that would be helpful for people to know?

I think I would just like people to be kind to other people and to understand that everybody’s body processes sensation differently. It would be good if schools and people understood this. Sometimes there are things that I want to do badly but I can’t because I am to over stimulate. This is a 24 hrs a day problem. I wish I could just isolate it but I can’t. It’s just who I am. There is no holiday.

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