Re: Just feeling a bit desperate

[Guest guest]

hi, veryspecial

Your feelings of desperation are natural, if my assumption is correct and your man is someone who has negative thoughts and low self esteem?

May I explain that I live with Ian, a late diagnosed AS, who suffered from misunderstandings and negativity as a child. He has the common co-morbidity of OCD, whereby he has negative thoughts, and repetitive behaviours that are known as 'stimmies' (stimulus) that are comforting rituals.

Ian will spend hours on the computer (I work with children and families who have tourette syndrome and AS, and this is a common retreat for them). Ian does this as a retreat from the world, when he thinks he cannot cope with the rigours of communal life. He cant make decisions. He can be intellectual on the things he knows about, but anything else, is off the radar. I do all the practical things in the house, and make the decisions, and earn the money. Ian has a chip (large plank) on his shoulder about past hurts, and relives those.

Mostly, though, Ian behaves exactly as your man does. He needs to be praised, given confidence, and have actions explained to him, before he will attempt to take up any tasks in the house, or automatically help me. I learned long ago that he has whole hours where he cant 'hear' me because his mind is very busy, and that I have to approach him when he is ready. I say 'Ian, I will need to speak to you at sometime about things that need doing today'. He will say 'I can talk about that now' or 'I cant talk about that now'. Sounds simple, doesnt it? But that negotiation strategy has taken us many years to reach.

Ian was bullied as a child and confused by his AS and lost all confidence in doing things that he thought was right, and in the end just did the things that he knows and trusts. That means computer games, hobbies, and going into another room for hours at a time. Initially I would lose my rag and ask him what he thought he was doing. Now I say, it would be nice to have dinner together, and what would you like to do tonight?

I never take Ian to social occasions either, unless he chooses to go. Ian has spent his life being fearful of getting things wrong, which is why he doesnt respond to day to day practicalities, he would rather hide and do the things he cares to do. So social occasions, even funerals, are a no no. He has the propensity to say the wrong thing, too, using his AS scripts, where he has heard people being successful as social interaction and copied them. However, he doesnt always slot these scripts into the right context, and when he gets that wrong, it pushes the hurt even deeper.

Your man may be using lots of smokescreen techniques to hide the fact that he is confused by neurotypical behaviours, that he doesnt 'get it' because he doesnt understand all that is said (and they often dont 'hear' because the words dont make sense, or they are concentrating on something else, totally immersed).

Ian asks for short sentences, clearly said, and no shouting. I respond with calm sentences, and reinforcement of how pleased I would be if.... and I have learned that if Ian cant do something - too fearful, too cackhanded, or its a sensory issue like smelly, loud, too bright - then I know to let that go.

In terms of keeping you company whilst you hang out the laundry - Ian would say to me 'why?'. Because he would think it illogical to watch that being done, whilst I would think it sweet and heartwarming. I have asked Ian to help me hang out washing, and he says he cant, because he might get it wrong. As it happens, he did help me (lots of praise from me, and he was very chuffed) but he did get it wrong, hanging the items up by the middle and pegging them at the arms. I didnt say a word. Since then he has pegged out washing for me, but wouldnt dream of keeping me company whilst either I or he do it. He thinks that isnt necessary.

I, too, have been at the pit of despair, still do, because the whole 'detached' bit becomes a burden. If, however, you dont take it personally, he isnt taking the mickey out of you, really, he isnt. He might need to know more about your feelings, and have it calmly spelt out 'I would really love it if....' 'even if you dont think its much, it means the world to me'.... 'thank you so much, you are great'. He wont know instinctively to do things for you. Hard Lesson One. He wont appreciate being nagged or probed. Hard Lesson Two. He wont understand what he is doing 'wrong' and instead will retreat to fantasy computer games, where he does achieve things and he understands the instructions. Hard Lesson Three.

You dont come with instructions or a controller, so you need to explain to him, gently, that you love him, and how he can make you feel loved too. Its not about saying words by rote, or just being in the same house. You need to expect him to be fearful of NT world, but not have the guts to explain that to you. Its about pride.

He isnt being any different from many an AS man (some would say any man, but AS have the edge on Missing The Obvious)

Please dont think this is your fault, or be cowed down because you are not getting through. When an AS man gets it, he is the most loyal and loving person. But you wont get the bunch of flowers as a surprise - not unless you asked him to go and get them.

There are ways of asking and of making him aware, and you also need to have some time to remember that you are worthy, lovable and that you have loads to offer. And to love yourself. I remember several times, wondering what was the point of my life and suffering day in, day out, with unrelenting 'huh?' 'are you STILL talking' and 'I am enjoying this, whats the matter with you'. Pick your battles. Pick your time to talk. Ask him about what it is he likes about you, and ask him to think about how he can show his love. He might not realise helping you to overcome your tiredness, your daily grind, or just anticipating when you need him, is showing love. He may never be great at anticipation. I have to explain things to Ian. But after 14 years he now greets me when I come home (and yes, I have the ninetyfive bags of shopping) even if he doesnt help with the bags, he thanks me for going to the

shops.

Ian doesnt go to shops because of the bright lights and the noise. His sensory overload leads to much muttering, fear, pacing and phobias. Check this out with your man? It seemed as though he was a lazy sod, but it transpired (after much complaining on my part) that he hates and fears crowded places. So such a trip is horrible for him. Honesty really pays off. We read up about AS after Ian's diagnosis - which came as a great relief, as before that he knew he was different and had been classified as mad when he was younger. He isnt mad, or bad, as he thought.

Those kind of negative feelings mean that with Ian, he puts himself first as a matter of survival. Its been hard for him to 'include' me. I have made myself included by living well, looking after myself and giving myself strength, then using that as a starting point for him and I. Put yourself first, and get all the support you need from friends and relatives. Take time out, and your vacation will do some good. May I suggest you dont use it as a escape from something you find untenable, because if that is what you feel, you may never win the battle?

He needs to hear from you, even in a letter or email, what you would like from him. In short sentences and short paragraphs. Many AS take information that is written down, rather than spoken. Long sentences spoken, or incoherent (as when we are really angry and upset) may go over his head, as he wont pick up all the words.

What do you want from him? What do you expect? How can you help him know what to do? He wont know unless you think it all out and ask. If he cant do the things you ask, he will have to explain to you how he can do other things instead. And the only way you will come to a consensus is to know what his capabilities are. Ian can do short, tiny bits of practical work (I painted all the house, he did one wall, very well, but couldnt do more than that). It is odd that they can do computer games, complex tasks and puzzles for hours on end (progressing along), but not see you struggling with household chores.

I now say to Ian, I hate doing this (he understands the concept of hating doing something) or that, and if he says the same, we agree to do this together - such as cleaning the bathroom. Subject to his sensory issues, of course.

I dont feel that your man is being deliberately harmful, the situation is so familiar to me from a few years ago, and even now to a lesser extent. The change has been my attitude to him, in that I dont see him as my saviour, or my romantic hero. Neither do I see him as a person who can escape from being in a partnership with me.

My compromise has been to exclude him from the things that upset him or cause him to meltdown, or where he feels hopeless or inept. His compromise is that he has to listen to me when I ask for support, even if he cant do anything else for me (and by the way, he hates illness as it makes him feel scared and inadequate - so I have to allow for his not looking after me in a crisis).

Ian is supportive of my skills, he tells people he is proud of me, and he never puts me down in public. Four years ago, he did put me down in public because he wanted to look like a fun guy at my expense, and he also bigged himself up before even mentioning me, and he ignored me most of the time when others were there. This was because he didnt want to look like he was reliant on me.

He IS reliant on me. He accepts that is a good thing. He accepts that he doesnt have to be Alpha Male to please me. So, now, I say nice things about him, and he trusts me that I love him even if he doesnt help me when I am fixing the roof on a shoogly ladder by myself. Adjustment - I can manage myself, and I am appreciative of my own worth. Learn to love how you are, and be proud of yourself. You arent a victim here. You deserve this vacation, and he might miss you although he might also not show it very well.

Try to be positive - he has negative thoughts (it seems) and is self absorbed. He doesnt need you to nursemaid him through that. He needs you to tell him how he can feel good about himself, and part of that is feeling good because he is nurturing you. I am afraid he may never do this on his own, and he may say 'well, she is going on a vacation, well that must be what she wants because she is doing it' he wont think 'dang, she is going away, what ever can I do?'. Spell it out in black and white, and whatever colours. You are going away because it has happened that way, but you will miss and think of him all the time. Will he miss you? Of course. But will he manage? He will play his games, his refuge, until you come back.

If you want him to be different, you have to explain that to him. If he doesnt understand, explain it to him. If he still persists in the cold front, decide how you want to proceed. But dont blame yourself (or even him), its how he sees things, as apposed to how you see things. Yin and Yang. You dont speak AS. He doesnt speak NT. Absence might make the heart grow fonder, but in my Ian's case, it means he starves (no food provider) and doesnt wash so absence makes his beard grow longer. But he is always happiest when I am in the vicinity. If Ian can demonstrate his caring for me after being much the same, your man might do the same. Its how you evolve to accept what you say to each other in terms of expressing love and care.

Dont do anything until your holiday is over, but do try to relax. You are a brilliant person trying very hard. Be content with yourself and try not to take all the burden. Only you can judge if the negotiation and compromise is worth the effort. Compare the good days with the bad, what was different? And dont subsume yourself for him, you will only turn into a drudge. Always remember who you were when he first met and fell in love with you. And keep that person intact.

Thinking of you and be strong

Judy B, Hardbitten NT, living with Ian, late diagnosed, damaged AS. Scotland.

To: aspires-relationships Sent: Monday, 11 June 2012, 2:33Subject: Just feeling a bit desperateHi all,It's been an exhausting day and I just needed to tell someone, so I came here. My suspected AS boyfriend and I have periods of harmony and periods of near-constant fighting, and lately it's been bad rather than good. I'm

feeling desperate and drained. I feel like he has no initiative whatsoever, like he doesn't care about me, like he doesn't mind if we're complete strangers to one another.He's always anxious around me and imagines bad intentions to everything I say and do. It seems like he always jumps to conclusions and these conclusions are always bad. Like everything I'm saying always has some underlying criticism. And of course we end up fighting because he becomes extremely defensive and I'm sure you know how it goes.I'm leaving for three weeks on vacation next Sunday and I'll have very little time to myself. Despite this, he spent the whole weekend playing video games on his own, and he gave me a hard time both days when I asked him to do something with me - either keep me company while I was hanging the laundry on the balcony on a beautiful sunny day, or just come to the store with me to buy a bag of dirt for my tomato plants. Simple things,

really. Just a way to spend some time with my lover since I won't see him for so long. But nothing will convince him to drop his f*******g PS3 controller.Sometimes I get so desperate, I can't leave him for some reason, and he always makes me feel responsible when I mention breaking up and so somehow I just want to fix things, but this is getting so draining at certain moments that I picture vivid images in my head of jumping from my balcony, blowing my brains out, whatever. There are moment I swear if I had an easy way out I would just end it, but I know I'm to much of a coward to take my own life. Seems like there's no way out of my misery.Sorry if this sounds pathetic or whatever but I'm really drained. Thanks for reading...M.------------------------------------ "We each have our own way of living in the world, together we are like a symphony.Some are the

melody, some are the rhythm, some are the harmony It all blends together, we are like a symphony, and each part is crucial.We all contribute to the song of life." ...Sondra We might not always agree; but TOGETHER we will make a difference.ASPIRES is a closed, confidential, moderated list.Responsibility for posts to ASPIRES lies entirely with the original author. Do NOT post mail off-list without the author's permission. When in doubt, please refer to our list rules at: http://www.aspires-relationships.com/info_rules.htm ASPIRES ~ Climbing the mountain TOGETHER

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