This forum is an un-mediated, patient-to-patient forum for questions and support regarding Asperger Syndrome issues such as: Balance, Behavioral Issues, Causes, Characteristics, Classification, Clumsiness, Communication, Diagnosis, Gait – Walking, Genetics, Medications. Parenting, Prognosis, Restricted and repetitive interests and behavior, School Issues, Screening Sleep Disorders, Social interaction, Speech and language, Treatment
What is it like to be autistic?
These are some random thoughts I’m jotting down from my own experiences. I try to write what comes in my head at the time the thought comes. This works best for me even if it may come out raw. I figure those who enjoy my “Wal-Mart” story would like to know more about the world through an autistic person’s eyes.
Recognizing faces is difficult unless someone happens to have an unusual feature that stands out. When I meet someone only a few times it is like meeting them the first time. This makes situations embarrassing if I am introducing myself to someone who already knows me. Not to mention I may learn to recognize a person in a particular setting but not recognize them elsewhere. Let’s say I learn to recognize someone at church if they sit on the same pew every Sunday. That was if I decided to go to church more often. If I see that same person in the grocery store they may be like a stranger and I’m meeting them the first time. Sometimes I may have the feeling like I’ve seen that person, but I can’t remember if I really know this person or not… If I get in a conversation it gets awkward. I don’t like to embarrass myself introducing me to someone who knows me already and repeating stuff I told them before. An even more embarrassing thing that happens is I may mistake someone for someone else and think I told them something when I didn’t. This confuses them and frustrates me. I try to prevent such a situation by keeping quiet if I’m not sure if I know that person or not. I figure if they know me, then they will say so. If I get to know a person on a long term basis, then I’ll eventually recognize them, but it takes time.
Eye contact: To me making direct eye contact with someone burns my eyes. It feels almost as bad as accidentally glancing at the sun on a bright clear afternoon day. Imagine a laser beam going from the other person’s eyes into anyone staring into them. It’s an uncomfortable feeling. Sometimes I may inadvertently make eye contact but once I’m aware I’m doing so, and then I look away. Animals like dogs and cats have difficulty with eye contact. To them a direct stare means aggression. Perhaps that is subconsciously that way in my own mind.
Parties and public events: I don’t find much enjoyment in parties besides the food. Often the noise and crowding is enough to make me uneasy. Often it means talking to a bunch of people who know me but I can’t figure out their names and who I said what to prevent being repetitive. Going to parties with people I’m not familiar is even worse. I don’t like to find random people to talk to. They must come to me first then I decide if I feel comfortable talking or not. If no one comes up to me, then I end up feeling lonely making the party rather unpleasant. I don’t like introducing myself. I’ve done that before and been ignored.
Conversations: I have difficulty. First off trying to join in a conversation is difficult. It gets complicated when two or more people are actively talking about something that sounds interesting. I may try to join in but then get cut off because they are too busy with each other. By the time I may be able to join, they may have already switched the subject to something irrelevant to what I was going to say. It seems either I interrupt to join in a conversation or forget it and just listen without speaking. I can’t easily find an appropriate way to join. In many ways, I guess it works out fine that way. I learn lots of interesting things and tidbits. Sometimes I find such things amusing. Sometimes bits and pieces of conversations I overhear can inspire me to think of more content to put in my stories. I remember bits and pieces of conversations. One conversation I found interesting was at a bus stop. There was a young man and an older man. I wasn’t about to sit near the older man because the smell from his burning cigarette drove me away. I stood outside while the young man sat next to the older man. Their conversation turned to bars and drinking. The young man appeared to be a fairly hard worker at his job but a coworker was getting drunk often. Others have had to fill in for that person and it was annoying to the man sharing the story. After a while the older man joked, “I drive better drunk.” This made me chuckle while thinking I’m glad he’s taking the bus and not driving. If he drives better drunk, how does he drive when he’s sober? No wonder he’s taking the bus. I enjoyed their conversation. Eventually it switched over to bridges. This was still only a few weeks after the I-35 collapse in Minneapolis. Living in St. Paul, MN makes this a rather hot topic of discussion. What other bridges are going to collapse now? That was their question. Whether any of that will be useful to my stories and character development I don’t know, but I tuck stuff like that in my head. When I’m actively writing, listening to conversations and observing people becomes more rewarding than if I am not writing.
Once I end up in a conversation I don’t know when to stop and let the other people say what they want. Taking turns does not come natural. I speak until I’ve ran out of things to say. If we are talking about insects, my stories and characters, chances are I won’t run out any time soon. People call this monologuing and it annoys them. I’m trying to make myself aware of this when it occurs, but so far have had little success. Pinching or shoving me with an elbow will probably cause a negative reaction so I don’t recommend that as a way to “remind” me to breathe for air and let others talk.
Loud noises: I don’t like them. If you happen to be under five years old, make a sudden shrieking tantrum and I’m there with you making a tantrum in my head. If it weren’t for me having to wait for my doctor’s appointment or the law against shoplifting at the store, I’d be out the door and away from the painful cries. I try to pack ear plugs with me but I really don’t like the feeling of something wedged in my ears. Wearing plugs in my ears is almost as painful as the noises I’m trying to block out. I use ear plugs as a last resort. If it’s a matter of my sanity or the discomfort of ear plugs, then the plugs go in. Vacuuming, mowing the lawn and anything that makes a loud hum must be done with earplugs. My ears can’t stand the noise. I have a difficult time navigating along busy streets. The roaring of car engines hurts my ears. If a huge truck passes under an overpass, the pain is excruciating, especially if it squeaks its breaks while doing so. The sound echoes off the walls and my ears. Sometimes even the noises that occur in a normal office are enough to set me in an anxiety attack. One time I went with my parents in Milwaukee, WI to a resource center for finding employment. In the midst of the shrieking of kids, rattling of keys, the banging of keyboard keys being struck, a noisy machine, and the soft whispers of people, I was supposed to fill out forms for potential employment. There were people eagerly willing to help me with the process if I wanted. That didn’t happen. I practically curled up in a ball on the table in tears. I tried to escape outside but the traffic was just as painful. I waited it out inside and tried to drown out the noises and my pain by sketching a picture. When my parents finished and we went home, I felt relieved like I was set free from a torture chamber in a dungeon. I can’t imagine having to work in a place like that. It’s painful just like having the volume turned way up high. T.V. commercials do a very good job at that… There’s certain commercials I can’t stand, not just because of their volume, but because their stupid jingles play like a repeating loop in my head. That’s a different thing though. My guess is that was purposefully done. My reaction is to mute, turn off the T.V, or run as far away as possible so I don’t have to hear the commercial. Not a very effective advertising strategy as far as I’m concerned. I’m not buying from them if I can avoid it.
Ongoing battle for SSI and my feelings towards the system:
Meanwhile I feel like, excuse me, I have to live this day in and out. That’s not enough evidence?! I saw a psychiatrist, who I knew right from day one would give me trouble. She asks me why I’m seeing her. I tell her I have P.D.D. NOS. She gives me a blank look. Granted I’m not good at expressions, but I’ve learned to spot that one. It’s the 404 look. File not found.
“What’s that?” she asks. My immediate answer is you’re a psychiatrist, hello? Duh you should know the DSM IV like a devote Christian and their Bible. Okay maybe I’m a bit pretentious. PDD is a lesser known diagnosis than autism or Asperger's. I don’t have the nerve to speak so aggressively so I state the longhand form; Pervasive Developmental Disorder Not Otherwise Specified. File still not found. I mention Asperger's syndrome and then autism. The Microsoft help team must be on extended leave or something… The psychiatrist is still showing a 404 look on her head. In my head I’m wondering how the heck she made it to get her job without knowing a thing about autism.
She asks me to explain. I can’t explain because my mind is too preoccupied with questions I don’t dare ask. I’m too distracted by the thought that she’s a psychiatrist and appears to know nothing about autism. Thankfully I have my grandma with me. When I was at home, I used my dad. These people come handy because they can explain what I wish to say but I cannot for whatever reasons. Grandma tries her best to fill in her perspective what she’s seen. The psychiatrist still looks confused. Her eventual solution is to prescribe a medication. On the bottle it reads Mirtazapine. Until now I’ve never heard of it and nor have I heard about it being used with autism. After much hesitation I take the prescription. I’m not sure if it’s helping or hurting. My depression seems less severe but weight gain is the problem. I’m not the heaviest I’ve been but I don’t want to get that way. After the appointment, my grandma and her friend who took us to the place, try to reassure me that the psychiatrist knows her stuff and is putting on an act to get me to explain. I’m not convinced but I know I can’t change their minds. This frustrates me to no end.
Parents of autistic children: be forewarned if you haven’t already. This is what you’re up against. It seems several doctors, psychologists, and psychiatrists don’t understand autism, especially the “higher functioning” forms of it. To them I look normal and speak normal besides grabbing various objects from their desktops to fiddle with. My mind freezes up. I can’t speak what I want to because the hand and the pencil work much better for me. Put me under pressure and force me through tests and I can’t give you an accurate description of how my daily life is and what autism is really like. I feel really angry right now because the government and health programs don’t understand a thing about living with autism. They don’t have to struggle at the grocery store with an emotional melt down in front of screaming toddlers and beeping cash registers. They don’t have to live with anxiety that prevents them from leaving the house and the familiar.
To them I have no disability and not deserving of assistance. It bothers me. I really thank my grandma for her help but it is not her responsibility. Without her I’d be lost. I dread what it’d be like after she passes away.
This piece was written Nov. 20-21 2007. I was going to put it in my portfolio with the Walmart story but I didn't feel it fit, but I wanted to post it somewhere, so here it is. Since then, we found out the Remeron was making me gain weight and practically starving hungry much of the time. Now she has me on Wellbutrin and we'll see how that pans out... It appears like I'm losing the weight the Remeron made me gain, suggesting it was likely fluid build-up.
Why every time I think about medications and psychiatrists, I get the mental image of trying on clothes at the dreaded Walmart or similar store?
© 2007 MJI