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Emotional Chaos, Sensory overload, shutdown, meltdown, withdraws - reasons and whys! PDF Print E-mail
Written by Alyson Bradley + various - Updated June 2010   
Oct 30, 2007 at 06:31 AM

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Maybe some of us are simply more in

tuned with the world around us!

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Sensory wise I not only hear and see you, I sense your

actions. I hear you breath, I see you move, sense your mood.

 But unlike you, the sound to me is intensified, the smallest

sound can send me into chaos. You may not hear,  but I

 do. You tell me to calm down, when you have no idea,

you mood turns and makes me shut down, frustration

mounts and then you wonder why I overload and meltdown.

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Sensory wise many spectrum individuals have a strong connection with their surroundings, so integrating with main stream society for many of us at times can be difficult and if we continually have to deal with input from others their way sensory wise and not allowed to be ourselves frustration, overload, meltdown, shut down happens and then it's our thought.

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As much as non spectrum cannot read me at times, I may not read them, but that does not mean I am unable to, I can judge others extremely well, maybe its learn from over the years of watching and observing, but isn't that how everyone learns. But it’s not simply by looking I sense their moods etc... I think we use our sense a lot more than non spectrum. I find what many non spectrum do naturally is not natural to spectrum-wise individuals, as I call it we are different but the same. We often get flooded and overloaded with emotion, as it’s not just words, actions that affect us, we are affected sensory wise also, and as much as at times I may misread non spectrum individuals actions, often they misread interpret me wrongly also.!

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I kind of take in all the emotions that surround me and there is only so much any one can take, that's the hardest thing somehow picking up other people’s emotions and somehow knowing how they feel, I guess we could call it good intuition, a kind of sense of knowing many on the spectrum seem to have. But because of this i can just shut down on some people and also not good at those that game play, as often somehow I know their intent and at times it hard to explain reason when others will not understand anyway and if try and explain they think I am paranoid or something, but sometimes I simply seem to know, I kind of sense things at times, have a deeper connection I feel, more in tuned with what's happening around me, maybe we have had to learn to read people differently, because often growing up we often try too hard and mostly for me anyway often did not work... who knows and who knows what parts of our complex minds we will be able to use in the future!

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Sometimes I find it so hard when I am saturated with other peoples stresses, its like having a radar that picks up on everyone else's feelings, when others are happy all good, but when not it’s like someone turns me off also and I become as stressed, as hurt, but unable to switch off I get so flooded I lose myself, until alone where I can desensitize and that's why too many people often overload me and those around me often are my stress.

 

 

At times I fill enclosed within a timeless capsule, the world continues and

surrounds, the sound intensifies until I no longer want to be around. I withdraw

further within myself to try and find a place that does not affect my every sense,

that does not judge and gives me space, no wonder I choose the glass shutter...

to come down, block out the world or scream inside where no sound.!

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My General Thoughts and to help those of you living with spectrum individuals,  understand them more, what it is really like for those of us living with daily. Yes everyone is sensitive to the world around them, but not to the same extent that those of us on the autism spectrum are, sensory issues are one of the biggest differences between spectrum and non spectrum individuals. Ever wondered why your partners prefers their own space to you, it’s not their thought and it is not you, the key is to understand reason and make compromises that suit each situation, as we often have to for you.  We also get overloaded when you ask us to do a simply tasks, simply you have not given us enough time to prepare and so instead of being able to do and think of one thing at a time, everything together overloads us into chaos.!

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One of the hardest things for those of us on the autism spectrum is whatever other differences we have, is dealing with sensory overload, the anxiety associated with this can be huge causing us to meltdown shut down, withdraw... let me explain some more, it has a lot to do with how we process information at times for me it’s like I am so in tuned with everything around me it simply gets too much for me to cope. Conversation wise one on one I am usually fine, add in any more individuals and I find it exhausting and often start to over process what’s going on and lose track of thought and its easier for me to stop listening to everyone else and simply concentrate on what i have to say, this works if I was talking to a group, but not when meant to be joining in conversations. It’s hard to know where to start as its apart of who I am and for me it’s so intense sometimes it can seem like every sound closes in on me, when bad I have to hold me head at times and as a release may pick at my finger nails, skin intently without knowing a kind of release. Some noises like screaming can make me shake, it almost like we do not just hear, but every part of us feels the sounds.
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As for children, if you have a child who seems to want to spend more time alone, there may well be a reason for this, especially after school etc... Spectrum children need to desensitize, often need space. School halls, playgrounds many on the spectrum find very hard, if a real problem as some of us affected more than others, maybe at playtime they could go to a quite area, help to desensitize. If a child pushes you away it may not be their thought and does not mean they do not care, give them space and let them know your their when they are ready. If they start to stim (stress release,many forms) a sign of overloading, again space and for some a safe place to let off excess build up from what may of coursed it, at times a small noise you may not notice, I think a must for all spectrum individuals is a quite space of their own, but of course this not always possible. Which often means what may be a simply shutdown, can turn to full meltdown if stuck in the place that is coursing them the overload in the first place!
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A quite night at home after cooking dinner and doing other things I want to relax, but the small noises like others on a computer etc... Will slowly stress me, more and more and then my younger son may want to cuddle up always a pleasure of course, but I can be so overloaded all ready I feel like pushing him away, need space.. of course I do not, but cannot relax either until everyone had gone to sleep, my desensitizing zone time... often can take a few hours to unwind once everyone else has gone to sleep and then I go to sleep late, as often do but the sensory overload starts again, the small noises I hear in the night and no I could never wear ear plugs I am simply extremely sensitive to things. Work wise I need to be in a quite space alone and be able to focus on what I do, which when allowed I am extremely good at, but please do not ask me to answer a phone as well. But as with any new situation the transition time is vital, I may seem to work in slow motion until in my routine, but do not judge me by this, because often once we are in our routines we are hard working and like to do what we do correctly and often extremely well, that if allowed to do in our own way, but rarely it seems, maybe the reason so many of us unemployed.!
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But this is my life, on days we have visitors I always by the end am so over processed hard to turn off, I have to keep my life days fairly organized to enable me to cope, that's why those of us on the spectrum like to over prepare in advance. Yes I do things like go for walks, gardening and lucky I can find space and quite when I need where I live the intensity and anxiety caused is the hardest to explain, because everyone is sensitive of course, but its different, if I contain my life and as my husband says maybe I would be happier living in a cave alone :) but joking aside as soon as I venture more outside of what I am use to, it’s like my whole world crashes in and harder for me to cope again for a while, so no wonder some of us simply become reclusive. But I am and have a right to be in this world, but rarely allowed on my terms, I do feel the non spectrum world needs to start to be more considerate of our needs, because I feel we will never be the same as you, have ever much you want us to.
(March 2010)

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“From when born not quite connecting, not understanding and being treated text book style has to have an impact long term, as even sensory wise can make us unsettled. As a young child I was seen as a loner, difficult, pushed into many situations that were uncomfortable to me and so I withdraw more behind my own screen into my own world of make believe, self protection, to my parents and others I was just the difficult one. As a school child I entered that huge empty echoing place, with so much noise I could not hear, I could not focus, I dare look others may laugh. What the other children enjoyed and talked about made me feel more of an alien. As a teenager by then of course I had endured years of bullying, being misunderstood, dismissed, put down and let down,  others talked around or at me, never to me, spat, pushed, laughed at me, like a dirty rag, so yes I was angry at times, often very lonely and extremely sad with the world, frustrated and felt not heard. I did not hit out, but took on broad all the pain and hurt inside, I think the painting "the silent scream" best describes the intensity, life at times unbearable, but somehow I did survive. As an adult I had been beaten down, given up on in a way and so just pretended to be happy, others took advantage, I just learned to wear that mask extremely well, but behind it often a deep sadness not only I could not relate, no one seem to like me, life itself never quite worked, society continued to let me down, so my world within this world my safe place. As an aspergian a breath of fresh air, like for the very first time in my life I could breath, allow myself to be myself, understand why I am, still having to deal with the after mart of living most of my life confused. So now I reach out to those still living In the shadows of life itself and I so hope no one else has to see the world as I had to for as long as I did. That’s what needs to change…” (extract from another article I wrote)

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Sensory wise more thoughts: I have noticed I often get louder in order to block out the other sounds and focus, often unintentional. Also at times I listen to other sounds, music to block out the smaller irritating sounds. Supermarkets one of the worst for me, I usually order my shopping on line, otherwise have to shop alone, as find when others with me, they end up stressing me more, I simply have to focus on what I am doing and block everything else out, the noise, lights etc.. Otherwise I overload.

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And I do feel as we get older it gets harder to deal with many things, and as I have found many of my Asperger traits seem to flood back and so maybe I am just simply less patience, but I have found many senory issues seem to affect me more than when I was younger. So maybe as we get older it gets harder to cope, a little like when children and have no control, I guess maybe we have less energy to control situations to fit in, as to continue trying to conform can be more of an effort as we age, simply exhausting, as most of us have adapted and try often extremely hard daily to be in a society that often simply does not get us.
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Saying that I do feel it’s much easier to cope sensory wise when we are in control of our situations, as can help situation work for our varied, individual needs. I often think we need especially designed environments, unlike non spectrum ones. As feel often many non spectrum individuals do not get our sensory needs fully and while they want us to conform, very few try to understand OUR social conditions. (March 2010).

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At times when I walk into a room it can seem like surround
sound as every noise crashes in on me as the sound merges
and I hear no one, the intensity at times makes me scream
inside, and I have to stim in secret to relieve the stress...
Overloaded at times with information, as I simply feed off of
your stress, my moods change with situations and I can become
saturated, flooded with such intense feelings my meltdown may
be simply an outlet, my withdrawal maybe a need to cope!

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We are often exposed to situations beyond our control and if we are unable to feel comfortable, do not we all back away, withdraw, auto defense. So what if we do not to you quite fit into everyone else’s circumstances, world, sensory wise alone can be alike a ticking time bomb, and when heighten senses become unbearable, our emotions can become confused to even explosive point. But if there was a noise that irritate you and you could not handle or stop, would not you lose control from time to time scream and shout, and what if no one still understood and your disciplined for suffering, wouldn’t you eventually shut down, close off. Sounds horrendous, but happens far too often to autistic children and individuals. All I ask is next time think and try and see through our eyes, not always yours. Conform leads to frustration, understanding leads to smiles…   

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I wrote this because I know the frustrations as an adult of wanting to express and not being understood, as a child the frustrations of reaching out and may as well spoken to self.... I do not wish to put blame, as no ones thought, but misunderstood differences often good intentions that are read so wrong, if only to be understood on my terms! worldwide individuals need to start to listen to those of us with lived experiences, I feel time for gaps to be closed, time for a better understanding for all... if your listening, you care x

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We are compassionate and when a crowd gets into a frenzy, we are often the ones on the outside and/or trying to stop, the logical one's. In the past I have often felt the need to step in and try to stop situations fights etc... not always been appreciated, the inappropriate one too many. When in crowd situations never really feel apart of that moment, still seem to be within my own space within the crowd. Even when I use to go dancing I enjoyed because I could lose myself in that moment, but often obvious to what was happening around me...
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Maybe that's why I like films because it's a one on one in a way, which I tend to handle better and maybe too much emotion all around us means party we overload and unable to relax enough to take all in, in bad situations a need to stop or hide because how it affects us... just throwing a few points out there to get others thinking : Emotional contagion - http://en.wikipedia.org/wiki/Emotional_contagion !

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Sometimes everything gets too much and I simply overload

and need a quick exit, other times I seem oblivious to what's

happening around me and somehow  can stay contained within

my own little bubble often where I am the happiest.

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We need to allow our different emotions to be real, my thoughts intensify my emotions, as I over think, see, sense, analyze this can make my emotions a lot more intense at times. The spectrum unsaid words where we get to sense and pick up on many things and at times it's hard to know exactly what, but my moods change with what surrounds me and that is why at times too much real life overloads me... To the ones I know and behind the screen I am beginning to allow my minds thoughts to flow, say what I feel, think not what I feel I should...... but in reality at times I muddle because what I want and what I feel I should say, habit I guess kind of merge...

On, off or in between the spectrum we all need to rethink who we are and allow others to be able to be who they are. Stop mirror imaging from magazine stereo-types and be realistic. Everyone has a right to be themselves, without continually being wrongly judged. So often I see people stepping outside that acceptable boundary, but who's boundary is it anyway.... will I be allowed if I dare, on a journey to discover true self, will I alienate myself more or in a sad attempt to fit in continue to imitate as in the movies!

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We're some bodies, and just want to be treated the way everybody else wants to be treated. We may relate emotionally and socially differently, lack natural social skills, have repetitive behavior patterns and intense preoccupation. But please stop reading us text book style, as it’s really not that simply... we are all unique individuals. And please do not tell me I have no emotions, they take me from one extreme to the next, and so intense at times I overload, withdraw, shutdown.

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My emotions are very real, I may express them differently. The times I see children, adults becoming angry and frustrated, withdraw because of lack of insight from others. We need to be allowed to show emotions our way, as what quite often happens our feelings are suppressed, instead of embraced when growing up and then as adults we often find it near impossible to express our inner selves and when we do others often do not understand, and at each attempt we are rejected.

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To not feel I can just have a meltdown, shutdown, close off which is normal to me, is not allowing my natural outburst, of course I now control and understand, but growing up we cannot control if do not understand. You may cry when sad, shout for joy and even scream at times, my emotions may be more intense different, maybe they should also be allowed my way. But because of the way I was brought up, I very rarely showed any emotions, for fear of being, put down, told wrong just for being me, of course this was partly because others did not understand me, including myself. I knew what was expected of me, but my emotions never seem to work like others. So for fear of being told I was wrong I often just shutdown instead…i.e. as a child at times I laughed when meant to be sad, and not having empathy for others in a way we are meant to means we often get read so wrongly, I may have seem emotionless at times to many, but I am not. I have had to learn to store up my differences, hide them away, so it’s no wonder from time to time the flood gates open, and overwhelming sadness, pain is released all at once, it at these times on the rare occasion others see me,  in their mind I am all wrong!

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I guess as adults we have to recognize what our triggers are and sensory wise what overloads us, I have many such triggers, someone just breathing or eating to loud can cause my stress levels to shoot, living in an environment that is not sensitive to my sensory needs can be extremely stressful for some of us on the autism spectrum, making us at times quite anxious, which can lead to stress, lead to overload, lead to meltdown…. Donna Williams calls this “Anxiety Exposure” a link to more on this at bottom of web page. I so agree it’s the environment we are exposed to that affects how we act and others not understanding this can have a huge impact upon us, for some children it would be near impossible to focus with too much happening around them, as a mother I found the noise of my own precious babies hard to deal with, in situations that are out of my control noise wise I can become from a confidence individual to an overstressed very anxious person quite quickly, my main focus becomes the irritant and everything else is irrelevant, it like a surge of nervous energy takes over and if I do not take control I will meltdown or shutdown.

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We cannot continually put on an act, show our emotions in the way which suits everyone else, no one can. Sadly this happens far too much and often ends with us becoming desperate and confused, reaching out, grabbing for any attention, when all we really want is to fulfill an empty void. I never ask to be born different, but as I am please allow me my differences, as at times others unintentionally suffocate me, making me defensive, wanting to hit out, but the only person who is harmed is me, often mentally and emotionally I get worn down, I need a release at times, skin pick, walk up and down, scream inside the turmoil of being misunderstood not allowed is real.

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reducedRock%20&%20me%20copy

Empty spaces between my over active thoughts,

I should enjoy but often feel guilty from the lack of any think!

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I think I use to think I had to learn how to be, as acted / pretended how I thought I should and then realized ok just to be me... with me I sense as much as say and kind of pull in everyone else's emotions at times and overload, I sense and feel at a deeper level, so I guess have a different sort of empathy... but saying we do not have, because others do not understand I feel is wrong and misleading... June 2009 more to follow soon...

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Sensory overload - meltdown, shutdown - When we overload we often shutdown emotionally, or act out from frustration of others not understanding. There aren't too many differences between meltdowns and shutdowns. Both are extreme reactions to everyday stimuli, we basically become overloaded by even our own environments, which we can control to a point. So always harder when we venture out into the big wide world. Both tend to be the result of circumstance / issues out of our control, if you have a child you can help by getting to know there triggers, what sets them off... same for adults.... but at times completely out of the control of the aspie.

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Some aspies when have meltdowns, just lose it while others lean more towards the shutdown, withdraw. It's possible to have both but this depends greatly on the situation and the person. Most aspies tend to have both but degrees of extremity can vary greatly.

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I do think that it does depend on the person, situation partly, to the reaction with aspies who are more sure of themselves or more fiercely independent leaning towards meltdowns rather than shutdowns but again there's a wide variation depending upon the feelings brought on by the trigger, something's that seem trivial to one may not to the next and some events can make even the most confident of aspies doubt themselves.
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The meltdown could be described as rage against a situation, a shutdown tends to be more of a retreat. Behaviors which manifest during a shutdown include rolling oneself into a ball or fetal position, crawling under objects or lying face down or completely under the covers on a bed. Gaze avoidance tends to increase significantly during a shutdown and conversation is non-existent.
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As with meltdowns, in a shutdown situation, the aspie may act irrationally or dangerously. Unlike a meltdown however, the harmful activities are almost always directed at oneself. The aspie may attempt self harm and may even be suicidal. They may be more likely to take reckless risks such as walking along a busy road on a dark/rainy night.
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As with meltdowns, the cause of a shutdown tends to be cumulative and the trigger may bear little resemblance to the actual problem. The real problems associated with shutdowns tend to lean towards depression, loneliness poor self image and poor self worth.
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In a small child, a shutdown may be triggered because of a simple breakfast issue (perhaps they were given something they don't like). In this case, the cause may actually have nothing to do with breakfast at all but rather it may be just the child's frustration at not being able to make themselves understood.
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In an adult, shutdowns can result from extreme events having to face a large crowd, new situations not prepared for, but they can also have very small triggers which simply remind an aspie of a larger pain. Perhaps a small incident at work could provoke some long term insecurities and cause a retreat.
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When we have meltdowns, it's usually best to leave us alone as long as safe, as a young adult I did attempt self harm, it's like a release of all the misunderstood built up emotions, confusion kind of collapse in on me. At times like this I can unintentionally be a little reckless, it's like a need to self-destruct for a while, boil over and as I calm down I will often then want to hide away and shutdown....

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When I shutdown, I just close off the world around me, I can response but it feels empty, I guess I become a little like a broken shell for a while, sometimes for days, sometimes for hours... and can just at times snap out of. I tend to not want or able to do much and prefer to not have contact with people. it's generally ok to talk in a soothing voice during a shutdown, just do not always expect a response or eye contact, and only touch if either invited or be cautious to see the reaction first, I prefer to be left alone....

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Too much exposure from my ordinary life can cause me much anxiety, too much all at once and I can become irritated, my blood rushes as my adrenaline escalates throughout my body. This is my warning to escape, withdraw from situation otherwise my nerves take on a life of their own and run wild, screeching inside.  My mind a blank chaos sets in, it’s at times like this I become very silent not able to answer even if ask or have a manic outburst. At this point any intrusion feels like an invasion of my world, as I fight to focus on anything, from my sideline view. One step and I would feel totally exposed.

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Some times as a defense, comfort I stim and/or talk to myself. I know no one is there, but by releasing my thoughts helps stop me overloading. I know at times what I say may not quite make sense to you, but when my mind is racing to have to as I see it over explain, takes up too much effort. What I say at times it may not quite go with what you are saying, but often what’s on my mind makes sense to me, and can interest me more than what’s being said. I view and see the world differently from many and as much you may not get me sometimes, I do not you.

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Conversion wise when my nervous energy is running wild I tend to either dominate the conversation when meeting new people and at times my words can jumble into a cascade of chaos, which rarely make sense to others, jumping from one topic to the next and at times even being in no relation to what you may be speaking about. At other times a deadly silence, which even I can find hard at times, when like this I often feel compelled to say some think, any think and usually the wrong thing.

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Racing thoughts often keeps me awake at night, like an overloaded computer that very rarely shuts down, just breaks down from time to time  I even went to meditation classes once and did try for a while, but they ask me to leave the class, as I interpreted others too much... too much nervous energy I guess... as I get older I feel there is hope that one day I will be able to, but for now long baths help me relax.... and long walks, being creative however that is etc..... Nighttime is my biggest nightmare laterally, I have to be very sleepy and have no noise, hard when your married have family etc... So usually I am the last one to go to sleep... the night owl.

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Writing things down does help me to progress my thoughts and not just procrastinate as us aspies tend to...  Emotional matters one of my biggest problem areas, a feeling of wanting to explain but worrying if not understood will make matters worse, after all for many of us emotion wise often we get things throw back at us, our thought for being the way we are! I have found by verbalizing and over explaining helps a little, writing down my thoughts in a letter or email sometimes works better for me anyway.... opens discussion or not!

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Emotions the not being alone, but feeling so lonely …. a scenario I feel many of us on the with ASD can relate to, I at times find it much easier to share my thoughts in writing, but find it near impossible at times to exchange them in the ebb and flow of actual personal interaction.  The empty void which many not on the autism spectrum find hard to understand, and unintentionally often make the divide bigger, we do not just see and express situations, we often sense and really feel deep inside, but at times it can seem like living in an invisible cage, because those intense emotions are trapped behind a glass screen and ours alone, the connection with the outside just is not there.

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I also so agree we sense the unease within this world, the cities have become boiling pots waiting to happen and feel many of us being more aware are more user friendly, we quite possibly consume less than the average person and I feel are more eco friendly, considerate to the world and animals around us… partly I feel this has some think to do with we not only see, but sense the unease, unrest… somehow we seem to have a deeper connection with the planet, we see details in the small detail and often notice things others may never see… since discovering I had Aspergers and many associated conditions not so long ago, my life has become one of self discovery…

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Whatever I do the future is what will happen, while it intrigues me. My anxiety comes from my own complexities, my personality being blurred edges of reality, as diagnosed late in life what part is aspie and what part enforced by none ASD people.  As in Oscar Levant quote: "There is a thin line between genius and insanity.  I have erased this line." Our complexities of mind, our obsessive tendencies push the boundaries - disorders such as OCD, bipolar maybe they are just extremities of difference.  Labels we are given by professionals trying to figure us out, and then feel a need to want to change, conform us to fit into their world - but we will never fit into neat stereo type boxes!. This is not meant as a statement, just a process of thought, just an idea to get others thinking differently, should we in fact label every difference? or allow for more extremities in this world, we cannot explain everything - autism, the universe and never will.  But until everyone is more accepting and understanding of diversity and difference we will continue to feel alienate from the planet we were born to be. 

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At times I wonder how I survived for so long as my differences were severe enough to hamper not only my dealings with others but, more importantly, my judgment of them. Maybe that’s why I can relate to celebrities that we so often read about and their personal struggles and  I am less cynical as understand how it feels to be trapped within our own  prison it has nothing to do with who they are as celebrities, I hate it that some just think poor rich people, life is not that simply and for some reason some of us are just born so much more complex, until society allows difference and diversity many of us will continue to struggle, often in a world that can be so unforgiving for extremities and complexities they themselves do not understand.

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I grew up blaming my life, childhood until I discovered bipolar, Aspergers and so much more… I am nearly 50 and feel half my life I have been searching for answers that were not there, I feel it is vital that more well known people speak out, otherwise so many more young lives will be wasted…. As much as those of us differently minded speak out, there will never be change until others really listen, want to hear and at least try and understand. We all need to educate ourselves and teach our children about diversity and difference…

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Some may feel sorry even laugh at those of us that are different from the average” norn”……! But I often see their inner turmoil and pain, where others pass by, as however hard I try and however happy I seem I always know the next storm is not far away, I guess my mind is like the varied weather seasons and guess I have kind of got use to the highs and lows, the bright days and dark days. Some of my darkest moments my most creative, the solitude I enjoy when allowed.  I am quite happy at the moment but know there will be many more days when I feel the need to hide away for a while, I do not feel its depression it’s like the ocean waves they come and go, with differing intensity, creativity and a world many of you may never get to know..

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Another of our misunderstood differences "empathize" is an area I feel we are often so wrongly read, as to me empathy has many shapes and forms, we just do, see, view things differently from many in this world, but I also like to think the majority of what is right is only where you are at a present moment. So surrounded by all ASD people, does that mean others do not have empathy if show differently from us!
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I also feel this is partly because so often none ASD individuals feel they understand professionally, but even those of us who have lived with ASD like myself my whole life and have many extended family members, Once I discovered self, my autism core, heart as I see it, it took me many more years to truly understand, I guess we are a little like the universe, the mysteries continue to enfold.

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Tides and waves

As Intensity mounts

So does the tide

My breath in rhythm

The waves they ride

Releasing and cleanses

I feel the tides pulling

Trapping me inside

Uncontrollable waves

Out of my reach

Tides reverse the action

Now within my grasped

Waves raise and fall

Re-balance from inside

Tides instigate reaction

The air is calm yet again

Waves wipe out the rage

And at peace for now

Alyson Bradley Nov.2008

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"One of the places I feel truly able to be myself,

by myself is out at sea, alone in a kayak, as my

  life continues to be an ongoing rollercoaster"

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  AsPlanet forum member comments

“Speaking as someone who has Aspergers, I often am treated more as

having a disability first and a higher aptitude for math and science second.

But I am proud to be an Aspie and if I ever find the genes for Aspergers

syndrome I will ensure that they survive for the benefit of future generations.”

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 “There is the worst:  An autistic adapted to the

normal people.  It is a grief. I know from me.”

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 First Impressions, Body Language, and Labels
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My comment:

Doubled edged sword I so agree, the amount of people who I know on the spectrum preferring at times an isolated existence because of this and many find it easier to start up relationships on line, email there thoughts rather than say, as often our expressions can let us down....
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I feel its so important that we are allowed to do things in our own way, because being continually wrongly judged often leaves our confidence shattered.... our difference way of seeing the world and insight should be allowed, even if our over focus to detail, obsessiveness is not always understood - in fact at times we are discouraged even given other labels just for being self.
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We all need to do whats right for us, otherwise like I have found we even begin to doubt ourselves. We can not help who we are and our differing perspectives need to be embraced, we can all learn from each other if we really listen.

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When I was first diagnosed because of the stigma attached where I live to the word Aspergers which at first was even alien to me, I felt ashamed to say the word, but now I am proud I refused to let others make me feel ashamed of self...

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Emotional chaos

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You may well ask, I keep hearing comments on this and want to put my thoughts down. Hopefully this will help untangle the mass of cross wires and misconceptions.

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One of the first things people often say when diagnosed is that I’m not emotional cold, and they are right. For some reason I keep hearing people not on the spectrum (NTs) use this to describe what they think people on the spectrum (Aspies) are like, false.

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If anything we are over emotional, but our balance is often wrong, going from one extreme to the other.

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This is where the emotional chaos comes in:

As a child we often grab out for attention, but told to stop, even to go away.

We withdraw further into our own little world, as reality often holds us at arm’s length.

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As a teenager we so much want and need that emotional void filled, but often go about it in the wrong way.

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We emotionally withdraw inside ourselves, holding in the pain, at times extreme to counter act the rejection.

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As an Adult we learn to act in order to fit in, often pushing away what we really need

Crushing who we really are, in order to please and fit into society.

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To break this circle we really need to stop trying to get our children to conform and let them be who they are, stop trying to change them and educate society that there is in fact a whole group of people who are just different...

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Socially we do need to teach boundaries, but also need to stop trying to change them into what they are not NTs, give them the confidence to be themselves. This can only happen if everyone takes a step back, and thinks outside their safe little box.

 

 

Emotionally Detached:

I can be emotionally detached at times, just need own space. Which can be caused because of emotional overload and just need down time.

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Emotional Overload:

This often happens when we continue to feel and give excessive amounts of emotion, which can often be misunderstood by NTs leaving us feeling rejected and alone. Feeling emotionally empty and not receiving the emotional support we need, confusion and chaos takes over.

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We can seem emotionally like ice at times, I often find I push away the people I really need when like this. One wrong comment and I can recoil into my shell, I think it’s partly due to the fact that we find it so hard to express our emotions and do not always know how to reach out, but it does not mean we do not care. I feel we also find it so difficult to ask and therefore are often misinterpreted. At times like this what I really need is a huge hug, instead usually left feeling more alone and more isolated than ever.

 

Emotionally Cold:
It's true that sometimes we may lack empathy and seem not to feel anything for a given situation. It isn't true to say that our feelings can't be hurt, they can. Sometimes we may show a reaction to our hurt feelings and sometimes we may lash out, but more often we will simply remain silent and impassive despite internal turmoil.

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The only real problem as I see it with having Aspergers:

If anything we can have too much emotion, and it's the social/emotional part that often causes us problems. Because we can seem a little different (odd) to some people, and at times find the usual social things such as small talk, being interested or caring. Which can be a real problem if trying to relate the correct emotion/feelings, and at times do not quite sense what to do in some situation like NTs do.

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We can feel guilty about not seeming to be connected to our emotions like others are, crying when feel we should, not getting as excited as others about some things, not feeling sympathy to others as we feel we should. The simple fact is that we don't really know fully who we are, and neither does the world. I feel that I know now, but knowledge is something that each person has to discover and realize for themselves, and as long as we live in a world devoted to Ignorance rather than Knowledge, this circle will continue… leaving us feeling at odds with the world.

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Emotionally people on the spectrum are usually very affectionate, honest, genuine and at times a little naive, but at least you know what we say is absolutely real, if a little too honest at times - we may not be good at faking it, but a lot of us end up great actors trying to fit in - wonder how many actors are on the spectrum!

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Love is it because we find growing up that often the experiences we have are often more pleasant in the abstract sense than in reality. That we lack to understand or at least understand in what is perceived as the “norm” stereo type of what love should be.

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How can we be fulfilled if it’s not on our terms, brought up to act in a way that is not natural to us. I do feel quite often autistic people have a void, dark lonely place where we withdraw to when trying to make sense of things. Maybe it’s easy to cut our self’s off, shut down rather than be what we are not!

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I do wonder growing up why I was only loved on other people’s terms and not my own. Partly of course we grow up being misunderstood and told the way we act and feel are wrong, so it is not surprising that many of us end up a little confused. Our own pleasure becoming irrelevant in the need to please others and mistakenly confuse lust with love.

Alyson Bradley (Dec.07)

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 Emotions and social interactions on forum:

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People communicate emotions through the senses.

Autistics are acutely aware of emotional projection, due to not being able to filter out sensory input and the mono-processing of emotions, even if they cannot identify the exact emotion that is projected (when the emotion is more complex).
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Just as sensory experiences have the potential to over-stimulate someone, they also have great calming potential, such as is used in stimming. The emotional mode can be one of merging with one’s environment to the point where one feels as if he/she mixes with other people, animals, and objects. However, taking in all the details of the environment can otherwise be overwhelming and frightening. Also, objects (including people) may be seen in parts because the whole is too much to be perceived at once. The autistic senses are wide open to both the “good” and the “bad” of sensory-emotional reactions.
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In autism, emotional communication will appear in more primal and unrefined (i.e. simplistic) ways. Since autistics do not internalize much of the more complex social-emotional hierarchy, more basic and less culturally-derived sensory methods can and should be used for meaningful interactions. This can include parallel play and teaching (or in some cases simply allowing) the person to express him/herself through art, such as music and painting.

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Taken from: Interpretations of the Mind: An Exploration of Consciousness

and Autism  - By Marcie Kimball - see full article via link, very interesting read: http://www.autism-society.org/site/DocServer/Interpretations_of_the_Mind.pdf?doc\

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Sensory overload: An insider’s perspective

Two days before I was diagnosed with Asperger’s Syndrome, I emailed a friend and described the experience of sensory overload:

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“I’m flooded constantly by other people’s energy, by sounds, visual images, everything. I can walk into a room and feel all the emotional energy in the room, but it’s completely undifferentiated. I’m unable to translate facial expressions or body language. I’m unable to filter anything out. Everything comes in, but my brain can’t parse it fast enough…I become very disoriented and overloaded. I say too much, or stumble over my words, or simply feel paralyzed and mute.”

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I’ve found that I experience sensory overload for the following reasons:

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Delayed processing. A conversation with even one person can overload me. Because I can’t read nonverbal cues and intuit what the person is thinking or feeling, I have to depend solely on the meanings of the words themselves. Therefore, I have to analyze the words and formulate a response very quickly. After awhile, I start to lose track of the conversation, and I have difficulty knowing what to say.

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The resulting anxiety can cause me to transpose letters and sounds in my response. At other times, I simply can’t remember the words I want to use. Occasionally, I become hyperlexic and start to do a monologue. However, I’ve learned through painful and embarrassing experience not to take over the conversation. It exhausts me, and it’s not exactly a wonderful experience for the other person.

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Fortunately, when I get more familiar with a person and we’ve had a number of interactions, I find it easier to have a conversation. Subconsciously, I’ve put together all the experiences I’ve had with the person, and I can use them to more quickly interpret what he or she says. If the person has a good sense of humor, all the better. I can joke around once I’m comfortable with someone, and if both of us can laugh, it relieves a great deal of stress.

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Difficulty filtering sensory stimuli. If I’m in an environment in which there are too many voices and other sounds, I become overwhelmed very easily. Too many moving visuals, such as a great number of people, buses, and cars on a busy city street, also have this effect. When the two types of stimuli are combined, sensory overload happens almost immediately.

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Too much empathy. Yes. That’s what I said: Too much empathy.

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For many years, I’ve been aware that when I walk into a room full of people, I enter into the experience of everyone in the room. It’s as though all the emotions come right through me. When this happens, I become very disoriented, so much so that I have difficulty feeling or thinking at all. I have tried shielding with my intellect, but the energy it takes is very draining. Whether I shield or not, I become very emotionally and physically fatigued.

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I’m still discovering strategies to avoid sensory overload, to respond to the early warning signs, and to take care of myself when it happens. In upcoming posts, I’ll say more about the ways I’m working to reduce the experience of sensory overload.

From Aspergers Journeys : 

http://www.aspergerjourneys.com/2009/01/02/sensory-overload-an-insiders-perspective/

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"There’s a book by Donna Williams called “Autism and Sensing”. It gives her own quite extreme account of the ’sensory overload’ you describe.I think we can learn to understand the ‘feel’ of all the information we are receiving, at least in some situations.In more demanding scenarios, I have to readjust my attitude to take into account the disorientation. It seems that regardless of the situation, if I stop thinking or making an effort, I just feel slightly confused, as though I’m suddenly unable to understand anything around me."

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Everyday Heaven by Donna Williams:

 Everything I read in regards to Donna Williams I enjoy, maybe because I can relate too so well.... Everyday Heaven, journeys beyond the stereotypes of autism and draws attention to what makes no sense to none aspies, does to us and vise versa, decided to add this book review see link, which also reviews most of her books: http://www.jkp.com/catalogue/book.php/isbn/9781843102113
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I have quoted this section, as feel explains how as Donna puts it they are (NT) "self in relation to others and I was essentially self in relation to self" its like others do not sense or feel as we do leading to many misinterpretations, I have included a few para's as feel relevant lines to me, when reading her books I know someone else really gets me:

"People assume that if you've spent time together with other people, you will have built up rapport with them over time. Unless you've disliked the people, it is assumed some sort of relationship has evolved. This assumption works fine for people who get to know each other through the system of interpretation. For them, each new meeting brings more knowing.
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I don't use interpretation to build relationships. Over time just accumulate a larger store of facts and establish some routines involving people's ongoing presence. When the people leave, I retain that impersonal, factual information, even for years, along with all other personally irrelevant information that my undiscriminating brain picks up. When the people leave, it is the end of the routine and that can be jolting. As long as I have disassembled all established routines by the time the people go, I'm generally not bothered.
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Very occasionally I'll deeply connect with someone who's entered my life. To me that's like a good dinner or like a picture that I like so I'm not indifferent to seeing good things go. But this has to do with sensing. I will sense whether I feel right around someone in a few seconds so if I don't find that with someone in a few seconds, then knowing them for a week or a month or a year won't change that."

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“All or nothing, either something sits there all year or gets done straight away”

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Exposure anxiety is increasingly understood as a crippling condition affecting a high proportion of people on the autism spectrum. To many it is an invisible cage, leaving the person suffering from it aware, but buried alive in their own involuntary responses and isolation. Exposure Anxiety: The Invisible Cage describes the condition and its underlying physiological causes, and presents a range of approaches and strategies that can be used to combat it. Based on personal experience, the book shows how people with autism can be shown how to emerge from the stranglehold of exposure anxiety and develop their individuality.

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It progressively shapes the individual torn between experiencing it as the sanctuary and the prison. Exposure Anxiety makes it hard to stand noticing you are noticing. It can make love a form of torture, repel you from the sound of your own voice, make you meaning deaf to your own words and those of others and compel you to avoid, divert from or retaliate against the very things that which most have the power to reach you. Exposure Anxiety progressively co-opts the identity of the person as separate to the condition or it leaves them aware but buried alive in their own involuntary responses and isolation. Exposure Anxiety is the involuntary social-emotional self-protection response that needs no enemy. It turns the world upside-down, makes no yes and yes no and co-opts and defies conventional, non-autistic teaching techniques.

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Exposure Anxiety has many faces. By defeating it at its own game, Donna demonstrates how the person can progressively be inspired to fight for themselves and attempt to emerge, from the undercurrent, as the tide.

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Exposure anxiety - The Invisible Cage, Donna Williams

http://www.jkp.com/catalogue/book.php/isbn/9781843100515 

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Just one small para from the book, which I feel explains so much:

"Exposure Anxiety affects all of us because we all experience fluctuations in

our hormonal and biochemical states in response to times of high stress. Puberty

is a good example here but not the only one. We all have known the excruciating

self- consciousness that compels us to pull away, divert attention, retaliate a

though we would otherwise suffocate. Everything that occurs in "autism"

occurs in those whoare not autistic. The difference is degree and frequency"

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My comment as I just want to add:  the reason I highlighted high stress, not

highlighted in book as feel this is the key, having to live in a society that we are often at

odds with, do not quite fit, can cause so much stress and we all know the affects of stress!

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 William Stillman : "IM NOT RETARDED IM SMART NOT A MENTAL GIANT BUT I AM INTELLGENT"  These are the words that were communicated to me by a sixteen-year old young man whom I was visiting in his rural high school classroom on a crisp and wintry January morning.  Like most teens his age, he took classes in keyboarding and computers, and was a fluent two-handed typist.  But his classroom was anything but typical; it was for kids in Special Ed, and my new friend was autistic and virtually mute, a man of very few words. And yet the words he conveyed upon our first meeting were a declaration to belie his physical appearance in favor of presuming an intellect intact.
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It was a credo I had heard--or rather read--from countless others before him; those who felt the need to qualify their unconventional mannerisms, vocalizations, and assorted neurological blips, disconnects and misfires by imploring, in essence, "Don't trust y our eyes.  This isn't really me.  See past my deceiving exterior, see beyond my label." And indeed, I always assure them that I see clearly their gorgeous humanity and profound potential.
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The desire to simply be welcomed and accepted is universal to all human beings, but there are those among us that struggle in the endeavor for worthiness--to be considered whole and complete and competent.  Still, while I've enjoyed a career as someone who intuitively connects to those on the autism spectrum, I knew that this concept of presuming was not exclusive to people with autism.  Upon becoming conscious of it, I realized that an assumption for incompetence of those with different ways of being surrounds us with glaring reality throughout each day.  It shows in the way others publicly avoid the brightly beaming man with Down Syndrome; or the adult son who berates his elderly mother compromised by dementia; or the impatience with which people tune out the person who stutters; the small child everyone thinks wants to be tickled, swung through the air, hair tousled; or the individual who is blind that truly is capable of ordering her own meal instead of the server deferring to her companions with, "And what will she have?"
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It extends even to the infant who struggles to make her needs known in the ways only she knows how to, as explained by my friend Evelyn, "My granddaughter usually takes a nap by falling asleep on my shoulder after letting me know that she is tired by rubbing her eyes.  On this day, she looked at my shoulder and started alternately bucking her head into my chest and pushing me away.  Instead of personalizing her behavior by thinking, "She misses her mother," or blaming it on entering the terrible twos early, or thinking she's overly tired, I decided that she was communicating to me that I had overloaded one of her senses.  I looked down at my bright orange ribbed sweater and decided that either the color or texture were not soothing and conducive to falling asleep.  I covered my shoulder with a cloth diaper, patted it and said 'soft.'  She looked at the diaper, at my face, back at the diaper, and then laid her head down and went to sleep
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In reflection of our neurological brotherhood, if we embrace the philosophy of presuming intellect we are in a position to become agents of transformation.  We have become a culture that elevates perfectionism to exalted heights, which is an unrealistic and potentially damaging aspiration.  When we acknowledge the kinship we share with one another, we are most apt to value diversity in our lives within the context of mutual respect, co-collaboration for greater good--and the presumption of intellect.  This is the proper response to autism.
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It's not too late.  But time is of the essence in recognizing this most salient truth about the autistic experience.  I hear too regularly from individuals with autism who are suffering...suffering not from autism, but from the abhorrent prejudices of others that seek to further distance our humanity from one another.  As a result, too many people with autism are severely depressed and contemplating suicide, absent compassionate understanding and devoid of an inner knowing that purports great purpose.  I should know, given my own version of autism.
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It was a quiet, inner voice that kept me safe from any real harm in my formative years, a voice with spiritual origins that I often discounted.  But it was this small, still voice that prevented me from taking my own life in adolescence due to the social pressures of non-conformity; and it is this voice to which I now owe reverence for enlightening me with the spiritual reserve to preserve.  So when this voice spoke to me again recently, I listened intently to its secret call.  It yielded a message of optimism amidst adversity, and of the need to stay the course in advocacy of those without a voice.  It concluded with a nourishing affirmation, "Peace within, brother tell." And so I'll carry forth continuing to tell what is right and true and good and kind, desiring to share a creed of acceptance.... Won't you join me?

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The Soul of Autism by William Stillman

"shows there is much to learn from people with autism about

transcendence rising and a new humanity accessible for all."

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The Complete guide to Aspergers Syndrome- By Tony Attwood -

Chapter 6 -The Understanding and Expression of Emotions

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User Comments

Comment by Guest on 2009-01-12 19:39:49
Really enjoyed reading parts of your web site. It is pretty impressive all the information you include. I finally learned more about shutdowns and meltdowns. It was frightening when my son had a shutdown in the 6th grade. I think the site is fabulous because you share the feelings of someone with aspergers. This information would help others understand the autism heart.

Comment by GUEST on 2008-05-04 21:45:43
Its those moments of personal strife, sweet injustice and determination, amoung other sensations, that i just knew i wouldn't be able to word or even recall if the time came, all laid out before me. Thank you for giving people the words to relate to and express things to their families they may otherwise have spent their lives retaining/poorly relaying!

Comment by GUEST on 2008-04-30 22:11:27
wow. It's all those moments of exquisite injustice I felt growing up and wished I had written down as to recall exactly why what happened, happened and what I learn from it in the attempt to move on!  
Among other things. I almost feel as though I can die happy. What a release! An entirety cathartic read! 

Only glad I can help, being diagnosed and understanding myself has also been a total revelation to me, thats why I want to share my journey and new found knowledge as it seems to be lacking big time in the professional world! 
 
I know just like me their must me many more people feeling at odds in this world, knowing there is some think, not depression, its not them, its just another way of being... knowledge allows for our differences... Regards Alyson

Comment by guest on 2009-07-16 20:42:52
This is very true. When I tried to express how I felt in my last relationship, I was accused of being melodramatic. And God forbid if I shut down (which I have)..that just makes the situation worse. I wish NTs could see the world through our eyes, just for one day.

Comment by Guest on 2009-07-16 20:42:14
That's beautifully written - I couldn't have said it better! It's a great way to describe the sensory aspects of Autism to people who don't understand or know about them. THANK YOU!!

Comment by Guest on 2009-07-16 20:42:02
I don't wish NTs can experience being us for one minute. I cope because I have to cope but I seriously doubt any of them can survive mentally unscathed with all the sensory input being on full-blast 24/7/365. 
 
That said, I know what you mean. 
 
I wish they'd have more sensitivity to our condition. I often joke, ha ha, to my wife that it'd be easier if I was blind, then people can respond to me properly instead of expecting me to conform to a certain expectation that's utterly unreasonable. ...  
 
As I remarked to Tom the other day, I'll call it "mild" autism when I get "mild" shutdowns and meltdown. Heh.

Comment by Guest on 2009-07-16 20:41:52
Thank you for writing this. I have tried to imagine or feel what my son experiences. He got to a point like you described in the last half of first grade. He was in such a fight or flight mode. The demands and sensory issues were too much for him. Thankfully the school has a program in place for him to better cope and encourages him to let them know when he needs a break.

Comment by GUEST on 2010-07-02 17:28:45
I am a 23 year old girl who has spent most my life wondering if I belong in a mental institution. As I read this page, I almost started to cry, as I worked through each paragraph and thought 'Yes, yes! That's how I feel, that's what I have never been able to put into this words, but have always felt!, that's the same torment I feel each day!!'  
 
Now, I'm not sure what to do. It's been hard for me to find a job. Everyone wants an employee who can be loud and confident. But I am shy and silent and anxious and awkward. They practically laugh at me as I walk in the door. So obviously, I have no health or medical insurance and could never afford all the doctor visits ....and have never been diagnosed.  
 
I wish I COULD get diagnosed. I think it's harder to know you have this problem and not be able to tell anyone WHY you act so weird.... I feel like everyone just thinks I'm stupid. 
 
REPLY: 
Their are many differences in the word the key is to be able to understand, accept and myself... but that's a long process and takes time, do you have any existing support, as this is something you can not rush, but their are many like minded individuals that so understand and that's what has always helped me the most. First start to write down every reason you feel you may be on the spectrum and if really feel you still are, visit your doctor and ask for advice because being diagnosed can help a lot, as then we have reason for all the whys and can explain to others. In the mean time please join myself and others on my support forum, as we are always happy to help and advise and their are over 15,000 post and nearly 1,000 threads with information that will help and help you understand and advise, as this is not something you should deal with alone. asplanet support forum: http://www.asplanet.info/forum/ you can also link into forum from main web site menu.


Last Updated ( Jun 13, 2010 at 08:11 PM )