How would you describe your life with Aspergers?

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ArielsSong
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16 Sep 2016, 9:50 am

My autism is a wall.

The wall has some holes in it.

I'm inside the wall. I'm a confident, smart and capable person. I'm a great communicator. But everything I say or do will have to get through the wall. Many things get blocked and can't find their way through. Some things manage to squeeze through the holes. Sometimes, they get through in the right order. Sometimes, they're jumbled up.

My thoughts are inside the wall, too. They also struggle to get out. Things that really don't matter, or should be minor, can't escape. They end up bouncing around, trying to get through the wall. They don't usually manage. As a result, they get far too much of my attention and have too much of an impact because they're bouncing everywhere and constantly getting in the way.

Things can't easily get in, either. Everything tries to get through the holes in the wall. It all tries to rush in at once, even if it isn't essential. This puts enormous pressure on the wall, and when I'm trying to focus on getting the right information in through the holes and leaving the bits I don't need outside, it all goes wrong and I can't work out what I need and what I don't. As a result, the wrong bits sometimes get in or it's all I can do to block up the holes and just shut down.

And there are no windows in the wall. Things are either inside or outside, so I'm not good with other perspectives and mental shades of grey. I struggle to see what other people are seeing, because I'm on one side of the wall with my thoughts, experiences and views. I don't see what other people see, on the outside of the wall, except on occasion when I catch a glimpse through one of the holes.

It's obvious from the above what the negatives of being inside the wall are, though some parts are also positive. The wall has protected me from a lot of situations, from properly negative ones to simple social ones that I would never have wanted to be involved in. I also tend to feel that being inside the wall has always meant that I've never been bothered about my image like other people on the outside. I might get frustrated about things that I can't do, but I've never cared for trying to actually impress anyone else. I'm happy with the simple things in life, and being myself, because the people outside the wall for the most part don't matter to me.

Interestingly, it's like my husband has found the biggest hole in the wall and can help me to send things through (in either direction), whilst my daughter seems to just be able to teleport from one side to another like magic! She has to enter my autistic side of the wall, she still can't get me to the other side of it, but she gets to see the me that is inside the wall which is something that only she has ever experienced.



League_Girl
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16 Sep 2016, 9:54 am

I made it this far in life and worked really hard.


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TheAP
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16 Sep 2016, 10:19 am

It's pretty good, but I get upset easily in social situations and have meltdowns. I also wish I had more friends IRL.



FluttercordAspie93
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16 Sep 2016, 10:26 am

Not as bad as some people make it out to be... But there are still a few peaks here and there.



TheSilentOne
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16 Sep 2016, 10:42 am

I'm a square peg desperately trying to fit into a round hole.


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16 Sep 2016, 10:44 am

I get by OK most of the time, but I'm easily overwhelmed when things change unexpectedly and come at me too quickly.

Lately my job has been taking a mental toll on me, as the work load increases and I have very little (if any time) to pause and gather my thoughts between tasks. If I could sit down for even 5 minutes between tasks and "downshift" periodically, it would help mitigate the daily onslaught considerably. When people ask me questions about something other than what I'm doing at that exact time in these frenzied moments, I know I sound stupid to them because I have a hard time processing and verbalizing a coherent response.

Most days I manage to pass, but by the time I get home and the mask comes off, I'm mentally in shambles. I usually take my lunch break alone so I have some time during the day to disconnect from everyone.


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16 Sep 2016, 10:54 am

Jute wrote:
I am under the impression that Asperger Syndrome is part of the autistic spectrum. But judging by some of the other threads that I've perused on this forum there appears to be a subset of users who are convinced that Asperger Syndrome is not part of the spectrum at all but instead adamantly insist that it is an entirely different condition, which is in no way connected with autism. Therefore I simply replied, in my first post, to the specific words that I read in the OP, which included "...your life with Aspergers." I didn't second guess what else the OP might have intended for it to include or exclude.

In fact even when I registered here, among the profile deails was a tick box set of questions that included...
Do you have Asperger Syndrome, diagnosed?
Do you have Asperger Syndrome, undiagnosed?
Are you related to someone who has...?
Are the parent of a child with...?
At the bottom of the list it asked...
Do you have autism.
If it's all viewed as a continuous spectrum why have the different categories? Why not simply ask, are you on the autistic spectrum?


How one is categorized depends partly, I think, on where and when you're diagnosed. As I was diagnosed in the US in 2014, "Asperger Syndrome" was off the table - at least officially.

At the time of my ASD diagnosis, I asked my psychologist if I would have been dx'd with Aspergers a year earlier under the old DSM standards. With some hesitation due to the official standards having changed, she verbally affirmed that to be the case. She just wasn't in a position to formally assign that diagnosis in writing due to the changes that had taken place in the medical community.

So I use the term ASD to describe myself properly, but informally I will say that I have AS.


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AJisHere
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16 Sep 2016, 10:55 am

johnnyh wrote:
Assuming they perfect genetic therapy and other things like stem cells, there may be hope in 40 years, you will be 70. If they develop this tech they will also have developed life extension techniques, maybe we can live up to 120-150. Thats 50-70 more years of better life. I wonder how we can hang in there, if none of it works ah well I'll probably retire to a handicapped home and play Call of Duty until I die. If there is another life I will hope I am normal, if there is no other life then it will be a dreamless sleep so we win either way in death. Although as someone knowledgable about buddhism there may be millions of different places to go after we die, I hope I don't go to one of those hells lasting a million years or be reborn as one of those freaky ghost things called pretas. I need a cup of tea.


Yeah, well... I just can't wait that long. Feels like I'm dying already.


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Jensen
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16 Sep 2016, 11:37 am

A bit like H.C.Andersens "Ugly Duckling" - but still awaiting the swanhood.


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Clakker
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16 Sep 2016, 12:33 pm

Encircled in a world of spin,
Preoccupied and fancy free,
I sit content and am vowed by me.
Don't bother with bridges or canals;
No expressway can overcome this gap.
I'm the guy who's lost within his thoughts.

My life is as lonely as an empty library but it's a library. I love libraries.


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Knofskia
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16 Sep 2016, 1:17 pm

kraftiekortie, I did not realize that. I know Asperger's is a part of the Autism spectrum, but I see Asperger's as an exclusive term and Autism as the all-inclusive term. So, all people with Asperger's have Autism, but not all people with Autism have Asperger's. It was probably just my literal thinking.

ArielsSong, that is a great description.

AJisHere, that is an awesome description and very poetic!


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JakeASD
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16 Sep 2016, 1:42 pm

Right now my life is an utter mess. I am always tired, withdrawn, bored and the highlight of my day tends to be when it ends.

But I should add that I have not been diagnosed with Asperger's syndrome as I had a speech development delay. My assessor said I am "high-functioning", but that seems like a misnomer to me because I barely function in any aspect of life at all.

I think I want my life to hurry up and end. It's an utterly meaningless and tedious experience that becomes more absurd with each passing day.


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auntblabby
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16 Sep 2016, 1:47 pm

AJisHere wrote:
auntblabby wrote:
^^^^^as somebody on the far side of the age divide, I can tell you the acuteness of the pain markedly reduces with the years. one way or another, your pain will diminish.


I find that hard to believe when without fail it gets worse every year. We're beyond pain now anyway, and into despair... into something that eats away at one's soul. The conclusion I've come to is that my only chance is to find the help I need, but I'm not sure it exists.

and if you don't get help it will get worse, ebbing and flowing but worse, until you reach your 50s. then it will likely abate. help does exist. you will have to search for it. it helped that belatedly and briefly I had a flukish GF experience, which was just enough to show me that it is basically counterfeit. once you find that out for yourself you will have great clarity and the pain will diminish.



davidmcg
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16 Sep 2016, 1:56 pm

Trying to be direct and honest here :) I find it difficult. My partner and I have constant misunderstandings due to my inability to read him properly and to identify my own emotions. My mind is constantly racing with thoughts like 'what's wrong with him?' - 'Am I acting the right way towards him' - 'why is he acting like that?' so I'm constantly asking him if he's alright which frustrates him. When I look at him, all I see is a blank face...I cannot read into him at all. I'm also very easily manipulated by different people. I sometimes think I'm being manipulated by my partner, but I really don't know. My work life is a nightmare. I work in finance and cannot connect to the corporate culture in that industry. I do not relate to my colleagues at all and when I try to, I come off as weird so people tend to avoid me. It's difficult when we have social events as I'm very anxious at those and usually sit quite with a drink which makes me appear antisocial, but in fact I'm trying to think on what to say, how to appear normal etc. At the end of the night, I'm exhausted and all I want to do is sleep. I'm constantly analysing myself and get extremely paranoid in work and out of work. Every face I look at is blank and I'm constantly trying to work out what people are thinking...are they thinking about me?

I'm also very sensitive to bright lights and loud noises. I live in London and bright lights and noises are everywhere from noisy tube trains, to people shouting in pubs, to overwhelming situations in, for example, shopping centres where there are noises and distractions everywhere. One time, I had to run to the toilet and lock the door just to get away from it. Even walking down the street is a nightmare. On a busy street, there are countless people walking towards me and I feel just totally overwhelmed. I stim like crazy in bars, shops, trains, buses etc...probably look insane.

Only time where I feel comfortable is in front of my PC playing a video game or immersed in VR with my Oculus Rift :)



auntblabby
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16 Sep 2016, 1:57 pm

some people expend 110% of their energy merely to appear normal.



Biscuitman
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16 Sep 2016, 2:35 pm

Fairly normalish I guess, just with quite a bit of anxiety and hiding myself away a lot as I struggle to make conversation.