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Featured frustrating autism awareness

Discussion in 'General Autism Discussion' started by Pats, Mar 10, 2020.

  1. Pats

    Pats Well-Known Member V.I.P Member

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    Why is it that all the little awareness items about autism doesn't contain the big stuff? The stuff that really makes our lives hard.

    Don't know if anyone has seen on facebook "The girl with curly hair" or whatever it is. When I first started seeing them I'd share once in a while just to let people know what it's like. But I'd always get "I can relate" and "I feel the same way" comments, and looking at them, they are all subjects that are easily relatable. Even the social difficulties, don't mention how you might freeze in these settings. I can find nothing out there about feeling like you're living in a box that restricts your every movement. There's nothing out there about not being able to get past that hum of the lights so you don't hear what anyone's saying. There's nothing out there about seeing a faceless world and fear of not recognizing your own kids.
     
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  2. Judge

    Judge Well-Known Member V.I.P Member

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    Good point.

    This was something I realized some years back in comparing rather "dry" online medical-grade articles about autistic traits and behaviors with direct feedback from autistic members of this community. Where I discovered that for the limited numbers of traits and behaviors medical sources focus on, that we who are actually on the spectrum have countless numbers of traits and behaviors not necessarily accounted for.

    In essence, what you are looking for you can find right here. You just wrote it. Paving the way for others with similar questions. That on some levels, we must be our own advocates.
     
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  3. GadAbout

    GadAbout Well-Known Member

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    "Nothing about us, without us."
     
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  4. Mia

    Mia Well-Known Member V.I.P Member

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    No one alludes to how you might freeze from the noise and lights all around you. Went completely blank in a costco and walked out into minus ten cold leaving my coat and wallet in a half filled cart. It was a panic attack, I think, after someone cut my cart off for the fourth time that morning. Hitting one of my arthritic hands with their cart, I felt this anger and then I completely blanked out. Didn't know where I was, my husband saw me as he waited in the car. After that, I didn't go in there without him. Have not been back there for a few years now. Too much noise, harsh lighting, awful people. Wonder if that ever happens to regular people?
     
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  5. Aneka

    Aneka Member

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    I think art is a good way of expression. I always tend to have images in my mind that express my feelings and I often see my head stuck in a gold fish bowl :D Another image is that of a stranded alien. My mind seems to translate all thought processes in pictures and sound.

    Don't tell me I know I'm weird. :tonguewink:

    Maybe they should just let people speak for themselves. Through music and art. This will really tell people how we feel.
     
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  6. Major Tom

    Major Tom Searching for ground control... V.I.P Member

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    I get that a lot when I describe my son to people. They say "oh, my son or daughter does that too" etc. I can't think of any way to describe him that people MIGHT understand other than to imagine the most hyperactive person with Down's Syndrome, with zero sense of danger. He doesn't have Down's but more people understand it more than autism. Just last week my work asked if "I couldn't just leave him alone for a couple hours, since he's 7?" I said absolutely not then tried to explain that he needs care 24/7 otherwise it's virtually a death sentence for him. They still didn't get it... Public schools are closed down here and I'm missing my first two classes every night because of it, I'm at risk of losing my job because of it. All because people do not understand the faces of autism and are freaking out about the stupid coronavirus.
     
    Last edited: Mar 10, 2020
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  7. tducey

    tducey Well-Known Member

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    The way our disorder works means it's going to be different for all of us. I've often said no 2 Autistics are the same.
     
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  8. Progster

    Progster Gone sideways to the sun V.I.P Member

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    Like that psychiatrist telling me on the phone that I "must be high-functioning" presumably because I was able to have a phone conversation with her.
     
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  9. SusanLR

    SusanLR Well-Known Member

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    Mine said I was high functioning because I can drive when I have to.
    Yet always in a state of high anxiety and only short distances alone from my comfort zone.

    Also because I have a very high IQ score.

    Everything else that is difficulty and lower functioning she ignores.

    Most days this drawing says how I feel :
    autistic3.jpg
    This art contribution was created by another member here some time ago.
     
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  10. Alexej

    Alexej Well-Known Member

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    A very powerful image.

    At the weekend I was feeling really down as a result of realising all that I had missed out on by way of feelings and enjoyment in life. I missed out on so much of the feeling side of getting married.

    As I look at this I see a place where it is dark and dank and little light. THe light are the feeling that inhabit the world many others (NT people) live in. These feelings are excluded from me and I an excluded from these feelings.

    Yet, there is another voice that says that the world I am excluded from also has negative feelings and aspects - which I am also exlcuded from too. So it is not all bad, but I am struggling to accept this in myself.

    Also I am struggling to be positive about this (today)
     
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  11. Alexej

    Alexej Well-Known Member

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    Art, music are wonderful ways of expression - they allow for an "and and" interpretation and not just the usual "either or" of our so dualistic world.
     
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  12. Pats

    Pats Well-Known Member V.I.P Member

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    How's this?
    Autism awareness
    High functioning autism awareness
    When someone says they are high functioning autistic, there's a tendency to think it's not big deal. Studies are finding that it may be more difficult to live with high functioning autism because of lack of support. They can appear normal while living with their difficulties.
    HFA - they still have meltdowns. These meltdowns may look more like crying for silly reasons. It may look as if nothing is wrong, but the person is frozen in place. It may appear as rudeness because the person just left the room abruptly with no goodbyes ot anything.
    Imagine what it's like to live in an invisible box (that many people on the spectrum relate to). Each added stresser makes the box a little tighter. While in their comfort zone (usually home), the box is large and gives complete freedom of movement, but outside the comfort zone,
    or even when there's an invasion of their comfort zone, that box gets smaller and limits what they are able to do. It may take a great deal of effort to step outside - not outside the box, but outside the door to their home. Once outside the comfort zone, anything begins to feel like a threat.
    Walking through Walmart is like walking through a jungle. The autistic doesn't see the whole picture, only the things they look at directly. When shopping for a specific brand, they have to look over each bottle infront of them, scanning all until they come upon their brand. Shapes of people
    without faces walking past with mumbled voices, maybe pushing their way by. Often having a need to hold something, so they push a cart, otherwise feel like they will fall. Most autistics have to look toward the ground as they walk or lose their balance, so they either hold onto a cart or they walk
    a little, then stop to look. Walking down the street, there's all these things around, but you see only the gum wrapper on the sidewalk as you hear cars rushing by and the loud humming noise of people talking. A girl was saying just the other day how she had to leave everything behind and
    run out of Costco because it got to be too much for that outting. Her husband had to console her and then go inside to get her purse and jacket. But this is high functioning. The dehydrated person out of her comfort zone at a social function, which has caused so much stress and anxiety
    that her invisible box has shrunk to the point she is unable to move. Also unable to walk three feet across the room to get that drink of water she so desperately needs. Or she's nervous talking to the doctor, knowing all she needs to do to stop herself from burning up and sweating is to remove
    her sweater but her box prevents her from lifting her arms high enough to do that.
    The adult autist has learned to control their rocking behavior, but frantically sits and rubs a finger against the thumbnail or a number of other repetative motion that is less noticeable. The stemming is always there, just doesn't stand out as something unusual.
    The social aspect is a great challenge. While some autists prefer to be alone, most actually desire relationships and just don't know how to obtain them. Some have just given up on trying. The public thinks autism includes lack of empathy, but it's quite the opposite.
    They become so emotionally affected by others that it may take days for them to overcome the feelings stirred up inside them. They don't know what to do with the emotions and, often, don't know how to share or show these emotions, even though they are quite strong.
    Autists are often seen as rude. Not only do they not know how to make small talk, but they hate it - it seems completely uselss and a waste of the energy it takes to try to engage in small talk. They may have saved a few lines to be able to respond and then feel lost once
    they have used those lines. They may seem uncaring after you've mentioned your very sick dog because they don't ask questions and moved onto another subject. They care, they just have no questions come into their minds to ask, and if they struggle and come up
    with a question it will end up appearing stupid and/or uncaring. Honesty also plays a part in social communication which creates the illusion of rudeness. With exceptions, most are incapable of lying. The last thing they want is to appear mean and usually have no idea
    that they've just insulted the other person. They lose another friend and walk away trying to figure out what happened.
    The majority of autists have never felt a belonging to any group. They feel like aliens and spend the majority of their time trying to figure out how to function in this alien world that seems to go against everything as they see and understand it. Then after spending time in this strange world,
    they become so overwhelmed, it may take a couple days to recover. The simplest things can be totally exhausting for them. They may run a meal over to an ailing friend, or acquaintance and go home feeling like they've just experienced something very traumatic.
    It's not easy accepting invitation. In the world of autism, you have a list of foods you eat - new things may cause gagging because of the texture. Sometimes, favorites can create a gagging response if focus turns to the texture, so more than likely, they have to be doing something else while eating.
    In the world of autism there's always a schedule. This is what is done in the morning, at this time the tv comes on, even if it's unwatched (it may be a way of being aware of the time of day). Any changes from routine is more than just a little frustrating. The only time it's okay to be off normal routine
    is when a project prevents their mind from going anywhere further than the project itself. Hours or days of intense focus, forgetting to eat, forgetting to sleep, forgetting to go to the bathroom until you can no longer ignore it. It's not the subject that one decides whether someone is truly autistic, it's
    the amount of focus put into it. There are no strange subjects really. There's a name for the study of almost any subject out there. And it isn't a lifetime of one interest, it can change frequently. It's the amount of intense focus put into that interest.
    With the autistic community, there are always certain health issues and co-morbid disorders, such as depression, anxiety, ADD, social anxiety, PTSD, IBS, and the list goes on. I could say with certainty that every adult autist has been diagnosed with the things I just listed. Other co-morbid conditions
    may vary person to person. It's possible that PTSD may be linked to their inability to know what to do in any situation involving others and often find themselves facing traumatic experiences in life.
    Sleeping habits can become a problem. As a child, they will probably be last to fall asleep and first to wake up. As an adult, sleep schedule may become as immovable as other routine, or may be something they have to work on all their adult lives. But, more than half autists become night owls rather than
    early risers.
    This is just the surface of the high functioning autism life. The difference in high functioning autism and low functioning autism is based on the degree of interference on other people's lives. If a person can drive a car without having to burden someone to take them wherever they need to go, they
    are considered high functioning. But that person driving is not problem free. The car may become their temporary comfort zone which makes it just as difficult to step out of the car as it is to step out of their house. They may be able to drive, but they know they need to allow themselves much
    extra time getting to an appointment because they easily become lost. may become so overwhelmed they have to drive slower or other various reactions to driving. Because a person is able to work in a regular job and not have to be financially supported, they are considered high functioning. But
    that working person has so many problems at work it's the only thing they are able to do and once home, retreat into their own little world to recover enough to do it again the next day. They have problems with co-workers and bosses because lack of social skills. But the work itself is probably above average
    because the amount of focus they are able to put into it.
    High functioning autism is not so much high functioning as it is low burdening.
     
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  13. Thinx

    Thinx Well-Known Member V.I.P Member

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    Did you write that yourself @Pats ? It's got some vivid description of what many of us experience.
     
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  14. Pats

    Pats Well-Known Member V.I.P Member

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    yes. thanks
     
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  15. Thinx

    Thinx Well-Known Member V.I.P Member

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    Wow impressive. That could be published. You could add it to the resources section here, a lot of people would empathise.
     
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  16. Alexej

    Alexej Well-Known Member

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    This posting is heavy, by which I mean it carries weight.

    Well written!
     
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  17. Running Girl

    Running Girl Active Member

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    I especially relate to the social anxiety descriptions ... i have been "RUDE" since I was 7 years old. You were spot on on most of everything else too, as far as I am concerned.