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papagayo

shock and denial

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Good Morning

 

At the age of 53, a man, married with two grown children, 3 weeks ago I was diagnosed with Asperger's Syndrome. It should not have come as a surprise as one child has Aspergers and the other has Dyspraxia but we always imagined that it came from my wife's side of the family. For once in my life I was lost for words. It also came as a shock to all my close family with the exception of one of my children, who was the one who suggested I went for a diagnosis. The lady who completed the diagnosis is a woman I trust and who diagnosed both our children. She has a vast wealth of experience and knowledge and does not take lightly giving someone I diagnosis.

 

I am not embarrassed by it, although I wont be shouting it from the rooftops, I'm just in shock with it and semi-denial. I suppose after 53 years that's hardly surprising. My first instincts were to get a list bullet points as what to do to get on with the job in front, which I understand would be my typical aspergers approach. I semi-resisted it as too the temptation to scroll back through the years and see if aspergers fitted the major situations good and bad through my life. In some ways aspergers would be a excellent excuse for the years of unhappiness depression and the family disasters I've help create and cause etc. but it isn't, it's only a possible explanation, it was still me who did what I did.

 

Obviously I don't feel any different to before the diagnosis, I'm still me. In some ways I wish it was like catching a cold then I could feel it and perhaps have some idea what to do about it.

 

The advice I've been given is to not do anything about it in a rush, wait until the shock and denial subsides. Try and live in the moment. It was said that really I don't know who I am, I've been acting a role for so long in so many areas. So now when I'm ready I can decide who I really am and be me. My wife would probably like me to be Brad Pitt, for my business I'd like to be Bill Gates :). No I'm going to take my time and let all this stuff soak, when I'm ready re-play the tapes in my mind (I've done a couple and they gave me an 'Ah yes, I see' moment) I'll do it. It will be A major or The Major Task of my life to make sense of all this and adjust my behaviour etc etc. For the time being I'll let the next few trains pass me by while I mull it over before I decide to get on one and (pardon the phrase) 'Start my new journey'.

 

If there is anybody of similar age and situation I would appreciate experienced considered wisdom on what you did and didn't do, that helped, pit falls to avoid etc etc. I have always sought advice on most major things before I make a move. Now is one of those times. Making the right adjustments and changes in the right time for me and for my family. Thanks

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Similar history here: got my dx at age 37, after my second son got his dx at age 3, am now 42: it took me about a year to grasp all the implications of the dx, I took some long re-views of situations in the past and analyzed in which degree autism was involved, and for some time I over-analyzed myself. By now, the feeling dominates that I am me (and not some dx), and I do use my "insights" only to try to interpret my son.

I haven't disclosed my dx neither at the workplace nor with my friends (1 exception) nor family. My wife and the children know, of course.

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Hi papagayo, welcome aboard!

 

I'm about your age and my assessment was inconclusive, thanks to the assessor: 1 not scruffy enough, 2 too smart and 3 my better half didn’t say the magic clause “she's weird” . I understand your emotions, thanks for sharing. This diagnosis can mean different things for different people : liberation vs slavery or enlightenment vs trap. I personally prefer the positive frame. It’s very important for me to accept myself for who I am and to like myself.

 

I don't think that aspy's mind is so dramatically different to the NTs. Can't say the same about our out of tune tools for interpretation of social interactions. I'm not a native speaker (working hard towards biculturalism) and it's a double trouble to navigate in a new cultural paradigm with all its richness of social rituals and tacit rules.

 

 

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Hi papagayo, welcome aboard!

 

I'm about your age and my assessment was inconclusive, thanks to the assessor: 1 not scruffy enough, 2 too smart and 3 my better half didn’t say the magic clause “she's weird” . I understand your emotions, thanks for sharing. This diagnosis can mean different things for different people : liberation vs slavery or enlightenment vs trap. I personally prefer the positive frame. It’s very important for me to accept myself for who I am and to like myself.

 

I don't think that aspy's mind is so dramatically different to the NTs. Can't say the same about our out of tune tools for interpretation of social interactions. I'm not a native speaker (working hard towards biculturalism) and it's a double trouble to navigate in a new cultural paradigm with all its richness of social rituals and tacit rules.

 

 

Tanya52 you have a magical way with words! "Liberation vs slavery, enlightenment vs trap". Beautiful. And I think that's the key to choosing how to cope with a diagnosis (and also many other aspects of life, including life itself!) Wow. Your words carry great wisdom. Us Aspies haven't spent our lives in careful observation for nothing. We are the watchers, the learners, the researchers. We see things which are unseen by many, we discover things which may be of little interest to others but the details can be just as important as the bigger picture, if not more so. We see patterns in life. - How things link together. We look for reasons and understanding. It does not satisfy us to learn facts which come from the minds of others. We are the adventurers traveling to undiscovered places within our own minds. And perhaps, what we learn by the end of our lifetimes, is far more important than how well we fitted in with the majority or how emotionally stable we were while we were here. I personally think it can only help to look back through our lives. What I found when I did this, was a long chain of cause and effect.......and that unbelievably, every little detail from my life carried meaning, like signposts or teachers. Because I did that, I understand the present a lot better, and choose to learn from the moments as they pass, instead of carrying emotional burdens to look back on later. Understanding my life healed me from the past and enabled me to give myself acceptance and happiness in the present.

 

Papagayo, something you said really made me think.

 

"It was said that I really don't know who I am. I've been acting a role for so long in so many areas".

 

Well here's what that made me think of:

http://www.youtube.com/watch?v=FwoLNtUuCVk

 

........and now i'll tell you why. :) Have you ever noticed that EVERYBODY is wearing a mask? They all do it, don't they?! I've observed their emotions and behaviour all my life and what i've found is that truly, the only difference between us and them, is that WE KNOW it's all false, while they (NT's) seem to have forgotten.

 

When we are babies, we are given a label, a name. We are told things about ourselves which we grow up to believe. The people and experiences we encounter shape and continually reaffirm our personalities, and most believe that the personality, the label, and the body is who we are....but it is not.

 

For example, people's reactions and words are often in complete contrast with their inner thoughts and emotions, they just don't notice the contrast, whereas we do seem to. I believe the reason I am socially awkward, is not because I don't understand their unsaid social rules, but because I understand too much. Conversations are so complex that It takes a lot of my energy to simplify things enough to pick out the most important aspects of group communications and stick to that like they can. It's overwhelming, overstimulating. When people are talking, they each have their own agendas, their own emotions, their past experiences, contrasting thoughts, their own personal histories and histories between certain people within the group. So often, their mouth says the very opposite opinion of the one in their mind. There are just so many dimensions to any group conversation. To me, it feels like they are weaving strings into a rug without even knowing the pattern they are creating. Each group conversation is like multiple hands joining in to play one harp and you have to be in perfect time with the others to know which strings to pluck and when. They don't seem to notice these strings, and so interaction is much less complicated for them therefore they don't feel anxiety about stepping into it. They don't seem to notice those things which are hidden. That's okay of course, and it must be nice to live that way. But I don't see anything wrong with being one of those people who CAN see the strings. I have a different role to play in the completion of that piece of music, which the others don't need to understand. I guess people are supposed to be more like bees or ants, who never take on each other's roles in the group. They just do what they were each made to do. My role is to be the listener, to be the one who hears with awareness the piece they have created. Art is never complete until the moment of observation. The reason I avoid large social situations and small talk, is not because I can't do it when necessary, but because I don't see the logical need for putting so much time and energy into interactions which are made complex but could be simple. Simple geometric patterns and shapes can be woven from conversation.......there is beauty in simplicity. I have no time to take part in the weaving of messy, tangled up rugs even though there can be beauty in those too. We are all actors, but most people have forgotten it's just a game!

 

All i'm saying is that we with Aspergers seem to be more aware of the fact that we are not our outer personality or shell. We just pretend to be because that's what we've always seen everyone else doing and so we assume it is our role too, when our role may be something quite different. We know the personality is false, because we can see it in ourselves and in others, whereas most do not appear to. What makes us nervous, is that we expect them to notice it in us, because we know we are lying every time we interact. They seem to believe their personality and image is what they are though, so there is actually no need for us to assume that they would think anything different or be suspicious of us when we present them with our own mask. Therefore, we can safely have fun with the roles we play, and keep everybody happy, while getting to know who we really are on the inside, for ourselves, not for the benefit of anybody else. I'm not even sure if it is possible to "be ourselves" while wearing the mask of personality and body. By it's very nature, the personality is a thing which is hidden behind. It is transitional, ever-changing. It cannot be a solid form because it is molded by experiences, which are also ever-changing and not in any way dependable. The real "us" is what is behind the mask, always.

 

Sorry for rambling on, I just felt inspired to write this down. I believe it's important. It takes time after a late diagnosis to understand the reason why we are different and why our lives have been difficult until now. But it's okay. It brings the freedom, if you view it right, to start the most exciting phase of our lives so far.........the discovery and acceptance of who we have always been but were always trying to avoid.

 

I hope you enjoy the experience Papagayo, and I hope you find all the support you need here on the forum. We are all very different I'm sure, but we tend to share certain similarities, such as compassion and thoughtfulness towards other people's troubles. I find it so helpful to find others here who truly seem to understand similar issues in their lives. :)

 

With love and blessings. X

 

(P.s The fact that I see the positives and am very accepting of my Aspergers does not mean that I don't recognize the very real difficulties we face as individuals living in a society which does not reflect our needs and sensitivities. I know it can be a huge struggle, for some of us more than others and when I am being positive, my intention is certainly not to be dismissive of the darker side. I know it is there. The only reason I am so positive about it is because I don't think we have problems because there's something wrong with us. I think we have problems because there's something wrong with the world. But I would never mean to offend anybody and apologize in advance in case anybody feels upset by their disagreement with my personal opinions).

Edited by Merry

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Hi Merry, :)

 

It’s the second time you’ve been very nice to me , many thanks. I understood everything you said and can relate with your emotions about an aspy’s place in a social “diagram”. In fact I used to think very similar, but after seven years of studies of conversational analysis, social interactions and now cross-cultural communication I wouldn’t agree that small talks are just some banal verbosity. It might be that humans use their languages similar to what ants/bees use their smells for? Every turn of a small talk is the info package with multiples layers :

 

locution-what was said literally

illocution- what was intended

perlocution – the effect on a listener

 

Anyway the most important in your message is a smashing “CAN DO" which I’m totally committed too. XXX

 

 

 

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Oh that's fascinating! I've never heard that before! I think what I mean is that it feels like conversations are small parts of a huge web....which I find it difficult to navigate through......because it so often seems messy and so much of it is indirect and not to the point, because there's so much which is unsaid, going on under the surface, behind what people actually say, so I prefer to listen. I guess it takes so much energy to try to make sense of it that taking part in it is often too much for me. I do feel that every interaction and word has meaning somehow. Thanks so much! :)

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The conversations are highly structured and complex phenomena. This is the best news for an aspy because I’m crazy about structures and patterns. Wake me at night and ask me to draw a syntactic tree of any complex sentence, and I’ll do it in no time with my eyes closed! And yet I still can’t spell “literally” without consulting my dictionary!

 

Now, tell me what is the socially acceptable norm: the prescriptive spelling forms or “growing” funny “syntactic trees” in your head? I presume that NTs would happily accept the experience they can relate( right spelling) and it’s my job to find what to do with my trees.

 

Conversations seem messy because I get info overload very quickly. English conversation is very technically challenging too: there’s only 0.5 sec for self-selection in between turns . This cultural Ping-Pong style is an “ice” on the multilayer pack which I’ve mentioned previously. XXX

 

 

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... Have you ever noticed that EVERYBODY is wearing a mask? ...

Technical term is "persona". Obviously, which one depends on whether you're addressing your child, your colleague, your partner, your client or someone you don't know, etc.

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Hi Papagayo.

 

I'm 41 and just managed to persuade my GP to refer me for diagnosis, though I've had a few years of becoming aware of myself and my traits so I feel I've been on a personal journey already - but haven't really moved on, if that makes sense. I've done the looking back, its the looking forward I need to work on - but I'm realising the importance of living in the present, as that is a much less anxious state to be in. A diagnosis would allow me to make sense of my life and why I've always felt different - everyone else seems to have noticed, usually to my cost, but getting medical professionals to see anything wrong has been painful, hopefully that's about to change. Even without a diagnosis I know what I have to work on, I'm very aware of my traits and what causes me problems in life.

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Many thanks to for those thoughts. I've always noted about myself things can just go straight over my head sometimes just after a few lines or words spoken, I can read and not take it in and listen and not hear. I will re-read these pasages again & again in the hope that some of it sticks.

 

I am still resisting the temptation to go back into my past as there are some very dark places there. I have however recognised that I am too open in my speech saying things that are not always appropriate. Trouble is at present I only realise this when the words have left. I must try to be slower to speak and enagage my brain a little more :)

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Hi............On self discovery and looking behind the "Persona" (Great that I now have a better word for it, thanks Shnoing), the first 45mins of this video, if anyone has the time, explains perfectly what I really want to explain but without the ability to write it in simple terms. This is what I began to discover after diagnosis when I tried to find my real` self. I wonder if anyone else has found the same? I wonder if this is similar to what you might find Papagayo? With love. X

 

http://www.youtube.com/watch?v=KopmSpe33Eg&feature=share

 

 

 

 

P.s Perhaps off track, but at 0.52, he talks about how Einstein was as a child, being considered slow, and how there are children who have a different kind of intelligence.....if allowed to explore it, if allowed to go deeper within themselves at their own pace, they are capable of original thinking, rather than repetitive learning. How should we measure intelligence, by the ability to remember facts, or by the ability to think for ourselves. Yes, way off track, sorry. X

Edited by Merry

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