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Female, 25, MN, member since Dec 2007
I'm autistic with the PDD NOS diagnosis. My fascination is into small things like insects and plants. Psychology and disorders also fascinate me. I use bits and pieces I learn from people to make up characters and write stories based on my characters. Besides making an... [More]
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insects, Writing Fiction, Art, Photography, Gardening, pdd-nos, Writing Non-Fiction, Writing stories, autism  
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What's it like to be autistic

Dec 21, 2007 01:48AM - 4 comments
Tags:

autism

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aspergers

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PDD

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pdd-nos

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autistic

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Autistic behavior

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adult autism



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?

Comments
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by ibizan, Dec 22, 2007 04:55PM
testing this i posted a long comment and it doesn't show here...

by ibizan, Dec 22, 2007 05:03PM
well darn now its working!i hate Wal-Mart.....rarely enter its cavernous innards it devours people and i feel like i keep walking and walking and walking and when i think i know where stuff is at they moved it.Noise?too much in this world and thats a documented fact!at work is way 2 noisy for me and i can shut my door...but LOUDMOUTH co-worker comes thru wall shrieking at x-husband,current boyfriend or her teenagers.One can even hear her upstairs slam a door downstairs.Faxes,phones,people going yadayadayada.....it get 2 much for me!and the intercom buzzer reminds me of a foghorn on the Swiss Alps!Like i said my reward at the end of the day is 2 come home and shut the noisy world out.Shrinks?in the past 20 some years that i've been in the fields of mental health,juvenile corrections and now substance abuse there have only been 2 that i think are worth their salt and really LISTEN to peoples feelings/thoughts.....and i'm glad theres one at our local mental health facility that i work with collaterally.The system is a endless maize of bumpy seemingly unavigable corners and dead ends......i think and have had others agree with me when i say the bureacrats and many so called professionals r more disturbed than the patients!

by stevie625, Jun 24, 2008 04:08AM
please,i understand you! i have a son who was diginosed at age 3 yrs,it is a constant battle,with schools,mental health doc.. etc..my son is 13 now every two yrs they change his teacher,every two yrs i have to explain what is wrong with my son.loud noises, he can not stand the tv loud or can he stand a light shinnig anywere on it,it drives him crazy unless we turn it off he will not watch it.. fire drills,not being excepeted by other children,being made fun of...had to fight for ssi,he by the way also has tourettes,articulatun eerorrs,,adhd,sleep disorder.he is extremly bright in the IQdepartment,what they do not get is,he does not know the common sense everyday things we all take for granted,he doesnot remember his phone no. ,his address,OR tie his shoes,HE is scared of hieghts,,he can tell time but has no concept of what it means, does not know when to take a bath unless we tell him,he gets up when we tell him to[ if his sleep disorder has not kicked in,he goes to bed when he is tired,even if we send him to bed ,he does not sleep until his body is tired,sometimes is awake until 4-5 in the morning ,because he may have fell asleep right after school for a few hrs. we can not control this ,he has a sleep disorder} he has no use for a telephone only to ask me to do somthing about the noise,if its ringing as its hurting his ears,{unless it is his oldest sister calling and he glances at the caller id and sees her name,then he will answer it.}other then that the phone is a anoeance to him. he has repetetive walking in circles and as he is getting older he is  running harder,also saves tourettes noise out bursts for after school as he can hold them for short peirods but lets them out imedietly after school,as he has kept them pent up to long...he wants freinds but does not understand why they do not like him. he only wants freinds when school is in,when the school yr is over he doesnt care about  or mention this as he is happy in his own suroundings,his family.he eats alone in his room,{always has not wanted to be around others while he eats}never eats at school,{ new teacher always want to give consecenses for this.. such as recess loss,wich he needs to release his tics... duh???.}but always waits until he is home to release the noises..he sleeps when his body is tired and he is awake when it  is not.he can go three -four days on a few hours of sleep,but when he is tired he is tired and can not be aroused awake .this was not a problem when he was small as i could dress him carry him to the car and carry him to class,however he is bigger then me now it is not possible ,but school doesnot care and wants him there asleep or awake ,doesnt matter  becuase they want the money they get for him sitting in that chair.as i said he is very book smart but he is not common sense smart.teachers read about the disorders your children have ,before trying to teach them.i dont know how to help you but if i find help for my son i will pass on the info. to you! god bless you !! i want you to know i understand,ill keep you in my prayers,im glad you have your grandma!  my son lost both is granpa and grandma  this yr due to cancer,i miss my mother so much as she understood my son and was a big suport to him as well as me.just do the best you can honey...do the best you can,that all i can do...god bless!!

by MJIthewriter, Jun 25, 2008 10:05AM
Yeah things are getting better, but a lot of the work has to come from me to vercome some of those noise sensitivities.  There's a lot of self will that it takes to learn common sense issues and social behavior. It doesn't come naturally. People are not born knowing how to ride a bike. It has to be learned. Once it is learned it becomes easier to practice.  I'm still not fond of the telephone, but I find if I want something bad enough I will use it.  For instance I got some african violets and I wanted to know what varieties the greenhouse grows so I could identify what I bought.  I wanted it bad enough...looked up on the internet, found the greenhouse number (they are in Canada), dialed the long distance number and left a message... I did it the next day and the day after, tried an earlier time. Sure enough I got through. They turned out to be very friendly people and gladly willing to send me an email listing the varieties they are growing. I sent them pictures and they identified them, which turned out pretty close to what I guessed.

Sure this is not a "practical" endevor, but it was a start. It showed me one thing; if I want it bad enough I can put up with a lot more than if I don't want it or don't care.

I guess the same goes for friendships.  Up to myself I am content to do things by myself, but I do enjoy interaction from time to time. As far as people not liking others, some of that is their problem. I wish a lot more people were tolerant of differences and polite.  If your son can find someone who is, that will help.  In grade school I'd be turned off when I thought someone could be a good friend would turn on me... Some people I just can't figure out. I guess if they couldn't play with their other friends they liked me... One friend I had in grade school would be my best friend and pick on people who were my "enemies" at the time, and then the next day side with my "enemies" and pick on me.... Some of those "enemies" were good friends if we played outside of school and one on one going exploring or bug hunting in the field across from the house...  Go figure...

In retrospect it was probably because they were boys and me being a girl, they probably liked me as a friend, but were hindered socially fearing that if others found out about it it would be a blow to their ego to be associated with a "girlfriend"....  Me being myself, didn't see that... to me a friend was a friend regardless of gender.  The girls weren't much fun because they'd freak out at the sight of a bug..which to me seemed just as strange as they likely thought me to be.

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