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PDD-NOS the person


je ziet veel internetpagina's en boeken over PDD-NOS en autisme, maar je leest nooit over de ervaringen van de persoon zelf. Alleen hoe je ze moet behandelen. Via deze blog wil ik duidelijk maken hoe het is om iemand te zijn met PDD-NOS die leeft met een storm in het hoofd voor de rest van zijn leven. ------------------------------------------------------------------------------------------ You will see many books and internetpages about PDD-NOS and autism, but you will find little on what a person with PDD-NOS will go through, to experience in life. Only on how to treat them. With this blog I want to show others on how it is to be like one. To be the one to live with a storm inside your head.

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The structure, my direction in life

This entry may probably be the most interesting for people to know about when their child or when they have a friend that has  been diagnosed with PDD-NOS or autism.

The world always will go to fast for my thoughts. It is a fact of life that I have come to accept with great difficulty, and that is where ' the structure' is needed. Perhaps the best way to describe it is to 'decode' the world around me before I do anything at all. Its all about making the world around me understandable and predictable.

If I lose my structure, a feeling of great helplessness and fear will grip me, and ofcourse, frustration because of all this will soon follow after. I will retreat back into myself usually to keep all others from harm, so that it is directed inwards. After a few weeks I will be better again and be able to operate normally.

"I make my own clarity in this world as best I can."

Structures like this are best created in an organised environment, like at my parents home. Where I strictly adhere to time schedules like dinner, breakfast and where my bodily needs can be done in between 'time-breaks'. I will feel relaxed and be able to do things in my own time.

The structure is meant for me to be able to focus on what really is important, It will mean that less confusing signals around me will not shock me as hard. The structure is predictable and as it is said, a structure, something to hold onto.

"From the darkness i will walk into the light."

Later when I have my own house, girlfriend, a real life. -- Which I crave about as much as I want to live normally. The thought just hurts of how frustrated I will be when I lost my structure because of something unpredictable. Perhaps by then I am adult and mature enough to cope with it. But as the last few weeks turned out I have still no control over my feelings when something happens.

When I look back now. I regret on what I have done to hurt others in my frustration. I did not even know most of the time why I am at that time as well, until afterwards. The overwhelming feeling of everything just going too fast and knowing you cannot find the stop button. It keeps on going, and going and going. If you can understand such pain, especially when your father might be there on the hospital table, dying and without you knowing. Just lops of the basics of my very structure and I lose everything already before he is even back, alive, in this very living room.

I've just barely come out of the reaches and started rebuilding, my girlfriend had to take a break from me for an entire week because of my unability to control myself. I could not find a way until I was alone, in my bed. Repeating the words to myself that its over. That it is okay again.

The utter frustration that it is beyond my understanding and that I have to do this over and over in my life is a pain I still have to learn to accept. I am sad.

Posted: 19:48, 5/4/2009
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The start, the middle and the end of emotions in PDD-NOS

The start

Emotional rollercoasters are caused by obligations, problems or situations in your life you hold no control over.

For me, either big or small, when bad things happen I take them like a blow to my head, and they will need processing. It is a tiring process because it will mean to rebuild my structure, and I cannot remember how many times I have done so.

Sometimes bad memories seem to float into my mind and they take me down with them. I can be exhilirated and happy and then suddenly be down and cast out. Unable to perform my work with the same motivation I have normally.

Before all this I was pessimistic, yet I have taken a turn for the more positive. Instead of dying and being reborn in my mind by starting anew. I just say I rebuild my structure, which help processing it faster by concentrating on it in a positive manner.

As you may have read from my previous entries, my father has been in surgery not so long ago. Even with this new method of rebuilding my structure, I still failed, because I am in a serious and deep relationship with a person that means alot to me.

I got tired, frustrated, because the method I had done so many times before did not work until 1 1/2 week after. Even when trying so hard, the frustration arose and I found that I needed to expel it somewhere. Only that I found out I did it everyone around me. I've lost friends this way before, it will probably happen again.

The middle
As a person with PDD-NOS you learn on what to care about, and what not. If you keep caring it will slowly drive you insane, and you become stuck on that one process. You won't continue, you will get stuck in the rebuild of the system. So it is wise to let go of everything and find some time alone. We - with autism - are great writers, we can write everything down, our hate, our frustrations and we will feel better afterwards.

It works better than to hurt the people we care about, even if it brings some sort of release. It is not worth it, you will only lose them and you will wonder later in life what it would have been like. That hurts, PDD-NOS will only become more difficult later in life, because of all the bad memories that stay with you, stuck. Even I still have memories that I can't get out of my system, most of them are painful mistakes that I have made.

The end
After having rebuild, I will usually be vey tired, frustrated and in need of support from someone or something. I remember a doctor program from DOS when I was young that I wrote to. I've lost it somewhere in the archives of my father. But it had helped me through a lot of things, silly as it may sound.

Usually in this part of the process that I have come to understand in all these years of living with PDD-NOS. I have the need for someone, to have as a lifemate, a companion that can understand what I am going through.

I have put others before through this process, including my mother, on more than one occasion. My stepmother, and last my father. But friends I lost, close relatives saw me as different.

In the end, the overwhelming feeling of being out of place, not feeling human at times. It was always that I was not a part of them. But instead, away from them.

Posted: 19:13, 5/4/2009
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Always out of place

I can be part of society without problems most of the time, but if I don't feel right, I will have difficulty coming out of my words or I will just shutdown on the spot. Needing to be alone, to get out.

I always find myself in need of time to process things right. But I will end up feeling frustated because of the time that it needs. Because I want to have it fixed. The fact that I need so much patience, which I only have so much of at the time.

I live on a balance, that is my structure. The weight of patience versus the weight of problems. People who know me, know and will tell me I have a more difficult time coping with things. The problem is when they say such things is the way they look upon me. The image I have left behind, telling me with just their body that they find me... different and to people, something different is not to be around.

Maybe I have just seen it too many times. Schooltime was more a time of scarring than having really lived a normal life. But never had I gotten into a fight, but the frustrations back than ran so high. I had to shutdown everything in order to get through it all. The only thing that kept me going was getting good grades for my father.

My mother and father started talking to me when they divorced, that is the first real talk I remember from when I was young, and that they put me in front of a psychiater. I do not remember much, but it seemed I had been there before when I was very, very young, around 8 years old. With the same doctor, so I felt more at home with her because she was more familiar. She shown me a drawing I made back at that age, vague memories came to me that made me remember very little except the contours of a real doctor. However, after a few sessions it became clear that they knew not what was wrong with me in my disinterest for my parents behaviour. Because I did not care what they did, I kept out of it. Being in my own world, outside of that, I had not interest for anything at all whatsoever.

I only got out of it until I was harshly treated by my stepmother, I really had more than one fits back than. But I want to thank her now at my age. Because if she didn't, I would still be the same way and less in contact with my emotions as I am now. I would have been unable to have relationships. I think I told her this already, but I only say things once every other time when I am in contact with myself.

I wonder... is it because I think so much that I am out of place? Or is it because I have a difficult time processing things? Maybe it is a little bit of both, with the fact I can become so easily emotionally detached. Referred back into myself, but I found out recently, that it is not as easily to do in a intense and deep relationship.

Posted: 14:44, 5/4/2009
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the history of PDD-NOS in my life

The very first time I found out that I was 'considered' different was when I was quite young, I felt unlike the other kids, I did not want to be like them. Because all it would meant was to be dissapointed, because I would not 'feel' the same. It just wasn't that way. I felt indifferent, I was frustrated at times, and I still have not found out a way to solve it.

I am a very introvert person, I always feel the need to check my actions, my thoughts and my worries, which when I don't understand something frustrates me extremely. Intense relationships for example are hard on me, because I do not understand most of the things that happen. I only made best friends when I listened to what they needed, but I could never tell them what I needed, I was just there for them. That was all they needed and I knew and felt that I had made good friends.

Now later when I am grown up, I hear little from them, but I know I can count on them when I need to. Because they are good persons, but, I feel no need to contact them. People find this odd in me, that I do not search for social contact, it is because I do not need it. My own mother is afraid that I will turn into a recluse. It just a simple matter of fact that it does not interest me.

When I was younger, socializing was not part of my skills, and neither did I have a colourful vocabulary, but I learned alot from spectating and imitating what the others did. But I avoided violence like the plague. I did not understand back than that when people like you, that they tease you. I did get into a fight because of random jokes that were made and which I did not understand.

Violence, I never did resort to it much, even on how much my emotions begged me to. On the outside I would be a very calm young man when I grew up, however even now I still feel a large dense cloud of frustration within me, ready to explode at any given minute. And most of my effort is going into it to keep it under control.

At times of heavy emotions like the one from this past week, if you read my previous entry , that I had a fight with my stepmother, was that I felt the years of rage trying to free itself, yet I remained calm because of sheer reason. I believe that it is cold logic that keeps me at bay that the computer had teached me over the years.

I grew up with computers, so social contact with my parents, friends and others were limited until  I went out and went to school, ate my dinner or said goodnight. I lived in my own personal world where I took refuge from the violent rage that courses through me. The logic from computers keep me calm, they do not pose a threat. That is why I feel safe, and comforted.

This went on for years, until I finally found out chatting. What my father had as a hobby for quite some time, I was usually very curious on what my father would do on the computer. And I had found my first internet girlfriend on there that lived in Belgium when I was 17. I still remember it vaguely, because i had tried to forget about the experience. However my stepmother has said to me that I should 'experience' and 'learn' from the fact on what had happened. I take lessons and make them my own, I repeat them over and over if they make sense and

I still feel awkward from the situation that was in Belgium with my internet girlfriend, because it was my first 'relationship'. I remember that 'out of the blue' it came to happen that the girl said that she liked me. I was thinking it was a joke at first. Until she said she was not joking. She also had a friend, and she liked me as well. That created a very awkward situation.

The girls were 14 and 15, I was 17. Yes , I know, its bad, but we tend to explore one's gender at that time. But I did not want sex, I wanted a real relationship where I would be able to entrust, talk, an adult relationship. But it was different for her, she wanted to explore me as a male, as an object. That did not work for me however and after about 1 month of spending time together in real life I broke up with her. Not only because of this fact, but also on how she acted to her friend.

She only came to her friend and went straight onto the internet to talk to me even without talking at times, I found that unacceptable, and she almost always called me every night on her grandmother's phone from Belgium, causing a huge raise in phone costs. I told her because of this fact I will call her more often, that happened a couple of times, but afterwards she kept on calling too soon every night anyway. Maybe I did not understand fully of how she felt, but I know that if I am not listened to, it does not work out. Or maybe it was too early to have an 'adult' relationship. For some reason I did not really 'talk' to her and I ended up breaking up with her with tears in my eyes, because on one night, they called both and told me I had to make a choice. And that was not fair.

 As you can see, I still have doubts on what had happened.

I did not understand fully.

Posted: 19:58, 3/4/2009
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First blog about PDD-NOS, perhaps even the most important one

You will see many books and internetpages that go on and on about the treatment on autistic children and adults. However they never tell you about the experiences that they endure. With this blog I want to make clear on how it is like about what we experience , and that we are not that different from the normal human being. But that we are able to do less, and experience even more frustration on top of the normal one we have daily.

I've also started because of the reason that my father has had his second surgery and I feel that I can't talk normally to him, nor with my stepmother, my own mother, stepfather, sister and my stepsister, and my friends. I just can't get my words out in the right way to make them understand.

I am 23 now and I still find myself in daily situations where I find it hard to process difficult situations. It is said that people with autism are terrific writers, well maybe we are.

Its just a week after my father came out of surgery alive from an anuerism, he is at home now and I have the most difficult time to see him in his current situation, so broken, so destroyed. Because I am so selfconcious of this happening. It is hard to process the fact that he's alive, that he is healing and that its going to be alright. I can't focus my thoughts into such a pattern that it is going to be okay. I just can't, my whole structure that I had is gone, and I have the feeling that I have lost everything. When this happens I usually immediatly go into a somber state of panic. Restlessness controls my life for a long period of time and its even utterly heavy to be able to do something at all.

I have a job and the people there will know when I do not feel right, I sleep bad and to me its almost the end of the world, until... that I get into a somber state that everything seems so clear, that it is unbelievable. However, it is random and in comparison to the complexity of what happened in my life, it might take days, even weeks before something will happen to make life roll more smoothly and I get back on track.

Talking to stranger is a lot easier than talking to people than you know. I do not feel comfortable talking to a psychiatrist. Ever since I have been to one when I was 14 and got analyzed with PDD-NOS.

PDD-NOS is nothing else than a collection of things that go above the normal characteristics of autism. I do not believe whole-heartedly that I have PDD-NOS. However people are right when they say that I have a more difficult time treating/processing things in my mind that they consider 'normal'. Like taking criticism, getting a compliment, situations that happen in my life, the positive and the negative. Its like crashing it to a large wall and not getting it filtered in right through the sewer grates.

Most people judge me before they ever met me. When I ask them if they like to be a never-ending storm of unstoppable thoughts, feelings and worries that assault me daily. And I mean really unstoppable, only being able to let them ebb away slowly, again, again and again. Is that humanism, or autism?

Due to the stress that happened this past week I also came into conflict with my parents. Resulting that my stepmother telling me I am not a normal human being, and that when I was at the highest point of my emotional stress that I haven't had for years. Rage poured through me from years before, everything I've worked to hide came free and I yelled once more into her face after 7 years of living quietly with my father. However I was still able to stay calm, i did love her, and what would my father think if I hit her? Even though it would feel as quite a release, it was not the solution. So I gave up on my feelings, as they were not regarded as being important, and I fel into another lonely depression ( in which I am writing now ).

2 years ago my father underwent his first surgery which was so heavy, the only way I could go through it was to pre-emptively think he was dead. For weeks I waited, I could not see him in the hospital, all I could do was work, have stress and not think about anything else. With my form of autism ( PDD-NOS ) I can't solve anything, I just can't process it, and that even after years of still trying. The situations will always return to me as if they happened yesterday, with the same amount of heavy emotional conflict, again, again and again.

This is only part of my PDD-NOS story, would you think I was a normal human, or one that has a form of autism?

Posted: 21:28, 2/4/2009
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Eerste blog over PDD-NOS, misschien gelijk wel de belangrijkste

Je ziet veel boeken en internetpagina's die over het behandelen van autistische kinderen en volwassenen gaat, maar nooit over de ervaringen die zij ervaren. Met deze blog wil ik duidelijk maken dat wat wij ervaren, niet erg verschillend is met de normale mens, maar dat wij gewoon minder kunnen doen, en meer frustraties opdoen door deze reden.

Ik ben ook begonnen met de reden dat mijn vader zijn tweede operatie heeft gehad en ik kan maar niet normaal met hem praten, hetzelfde geldt voor mijn stiefmoeder, eigen moeder, of stiefvader. Mijn zus, stiefzus of vrienden, iedereen is voor mij vervreemd en de frustratie is enorm, want ik kan maar niet uit mijn woorden komen.

Ik ben nu 23 en nog steeds kom ik in situaties waar ik het overal tegenkom: dat ik het moeilijker heb met het verwerken van moeilijke situaties. Er wordt gezegt dat mensen met autisme geweldige schrijvers zijn, misschien is dat ook wel zo.

Dit is net een week nadat mijn vader levend uit de operatie is gekomen van een aneurisme, hij is nu thuis en ik heb het moeilijk om hem zo te zien in zijn huidige situatie. Door mijn zelfbewustheid is het moeilijk voor me om het nog steeds te verwerken dat hij levend is en wel, dat hij heelt. Dat het goed met hem komt. Ik kan mijn gedachten niet focussen dat het allemaal goed komt. Dat lukt gewoon niet, mijn structuur is weg, ik heb het gevoel dat ik alles ben verloren, echt alles. Wanneer dit gebeurt kom ik in een staat van sombere paniek, lusteloosheid beroert mijn leven voor een lange tijd en het is zwaar om maar iets van kleine omvang uit te voeren.

Ik heb een baan en mensen merken wel dat ik me niet goed voel, ik slaap slecht, het is bijna het einde van de wereld. Totdat...  ik in een sombere stemming terecht kom waar alles zo helder is, dat het bijna niet te geloven is. Maar dat is zo willekeurig, naar mate van de hevigheid van de ervaring kan het dagen,  soms weken duren voordat er iets gebeurt dat het weer allemaal een beetje goed loopt en ik weer een ander structuur kan creeren.

Praten met wild-vreemden is makkelijker dan met mensen praten die je kennen, hoewel ik me niet comfortable voel bij een psychiater. Waar ik alleen maar eenmaal ben geweest en een diagnose kreeg van PDD-NOS toen ik 14 was.

PDD-NOS is niets anders dan een verzameldoos van allemaal bevattingen die boven de normale autistische kenmerken komen. Ik geloof er niet met al mijn hart in dat ik het ben. Maar mensen hebben wel gelijk wanneer ze zeggen dat ik het moeilijker heb met dingen dat zij ' normaal ' beachten, zoals kritiek opnemen, een complimentje krijgen, gebeurtenissen van mijn leven goed verwerken, positieve en negatieve. Het is net alsof het tegen een grote muur opbotst en niet goed wordt gefiltert door de rioolgaten.

De meeste mensen beoordelen mij al van te voren. Vaak vraag ik ze dan hoe zij het zouden vinden om in een storm te zijn van-niet-tegen-te-houden gedachten, gevoelens en zorgen die dagelijks door mijn hoofd gaan. Ik bedoel echt niet kunnen blokkeren, alleen zachtjes weg laten ebben, telkens opnieuw, opnieuw en opnieuw. Is dat menselijk, of is dat autisme?

Door de stress van de afgelopen week was ik in een ruzie gekomen met mijn ouders en vertelden mijn stiefmoeder dat ik geen normaal mens ben, terwijl ik toendertijd op het hoogste punt van mijn emotie was na jaren van niets te voelen. De razernij van jaren en jaren kwam omhoog, ik schreeuwden in haar gezicht na 7 jaar van stilletjes naast haar en mijn vader te leven, en nog was ik in staat kalm te blijven, want ik hield wel van haar, en wat zou mijn vader ervan vinden als ik haar sloeg? Hoewel dat verlossend zou zijn, was dat niet de oplossing en gaf ik het op met mijn gevoelens. De mijne waren blijkbaar toch niet belangrijk genoeg, en ik viel weer in een depressie ( in welke ik nu zit te schrijven ).

2 jaar geleden was mijn vader in een meer hevige operatie gekomen en toendertijd kon ik er alleen maar doorheen komen door te denken dat hij al van te voren dood was. Wekenlang zat ik te wachten, ik kon mijn vader niet zien in het ziekenhuis, ik kon niets behalve werken, stress en niet nadenken. Met mijn vorm van autisme ( PDD-NOS ) kan ik niets oplossen, ik verwerk het niet, het lukt mij gewoon niet na jarenlang proberen. Het zal altijd weer terugkomen met dezelfde aantal heftige gevoelens die erbij horen, keer op keer.

Dat is nog maar een gedeelte van mijn levensverhaal met PDD-NOS te leven. Zouden jullie denken dat ik eerder een normaal mens ben, of iemand die wel een vorm van autisme heeft?

Posted: 14:55, 2/4/2009
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