What's actually happening?

[Mumble]

Excuse me if I ramble a bit, I'm not quite sure how to put my question.

 

I lost it big time this morning in the breakfast hall at uni (much to the amusement of the other students). Why? Because they'd shut the shutters at the wrong time and so interferred with my breakfast routine and their 'help' when they saw how distressed I was didn't help - but then it doesn't make sense that I can't eat cornflakes that have been brought out of the kitchen rather than passed through the middle hatch, it doesn't make sense that I can't drink the orange juice they got me because they haven't filled it to the correct line. It just doesn't make sense that I can't cope with such really insignificant changes which most people don't even notice and that I can't then cope with the 'help' that people try to give me - now rather than having breakfast I've had nothing and I'm hungry, but I'm too scared to go to the supermarket on a Saturday because of the noise and because it wasn't in my plan I don't know what to get to eat.

 

My question I suppose is what is actually happening in me to cause these reactions? I think if I had a logical, rational explanation it would be easier for me to understand myself. Trying to come up with an analogy, I can understand that someone who is paralysed can't walk because the nerves are damaged and the signals to walk don't reach the brain. I understand that AS is a neurological disorder, but what is it within this that actually leads to these strange reactions? I don't know if I'm making any sense - I just want to understand myself and if I can give a specific cause (rather than just AS) to the effects if would help me understand myself. I suppose what I'm looking for is something like, because of AS, I have............and this.................results in.................because................. . I just need some help filling in the blanks.

 

Mumble

Edited June 9, 2007 by Mumble

[pearl]

Awww, hun. I havent a clue, but I'm very good at giving these: <'> <'> <'>

Try & eat something. JP gets worse if his blood sugar is low.

[Bagpuss]

Mumble, Pearl's right, try to eat something. My eldest dd said the other night " I don't like surprises", which sums her up so well. If we make any sort of arrangements for days out, friends coming for tea, etc, she has to know precisely what time they are coming, what time they are going. .........I feel it calms her down, she doesn't like the unknown element, and if she knows exactly what is happening, she finds it easier. I think it's part and parcel of AS, for her, and she finds it difficult to cope with the unexpected. Take care <'>

[baddad]

Hi Mumble -

 

Can't offer any help on what is going on or why (sorry <'> ), but from what you've said it sounds as though the 'routines' and reassurances you need may actually be increasing, so I guess the first thing to consider is factors in your life that might be contributing to your 'general' unease.

Undoubtedly, part of that is going to be college and being away from home and the stresses of dealing with all of that, but as you have previously negotiated those types of situations it seems (from an outsiders POV - I don't, of course have any real knowledge of the specifics, so please forgive me if I've got it wrong) likely there is something else going on too......

While all of the behaviours you describe are symptomatic of AS, the 'accelleration' factor ( to my mind) suggests other things might be having an impact. These factors could be external (i.e. college life; social responses and pressures...) or internal (personal/academic worries, self-esteem...) or medical (co-morbids, stress, depression...) or a mixture of all three.

Given that your dx is fairly recent, and that you are going through that process of re-evaluating your past in terms of that new found knowledge (that 'ME/THEM/Me thing) I'd guess that plays a part too. I think a big part of it is learning about yourself and recognising what is negotiable (Not sure if that's the right word(?)) what isn't negotiable, and coming to terms with the implications of what that might mean. For people with AS/ASD (not exclusively - it applies to everyone, I think, to some degree but not to the same degree) there's a 'comfort zone' in between those two that narrows and widens at various points and depending on circumstances...

 

I hope there's something useful in that lot - but feel free to disregard if it sounds like a load of old tosh! I suppose 'In a nutshell' I'm just trying to say IF the routines seem to be increasing/intruding more, then you need to examine why that might be. That may be something you can do for yourself, or you may need to get a professional/outsiders perspective on it.

 

L&P

 

BD

[David Matthew Baker]

Like BD said about his post I'm not sure this is entirely right but it is how I understand things at the moment from what I have read, been taught and a little guess work to put it together.

 

Autistic people rely on routines because they have difficulty predicting how people or situations will unfold given a series of prior events. However by following a fixed routine you don't need to predict the future because you have experienced it before hence know how things will go. People with ASD are often more receptive to the small details (so whilst for a neurotypical the changes you mention might not make them feel it is a new experience for you as you haven't had to deal with it before) it seems like a new experience. Most people become a bit apprehensive and worried when doing something for the first time. That is normal. It is just because of the way your mind works you are much more suseptable to noticing when things are different. From what the trainer on my TEACCH course said they try and deliberatly slightly vary the routines of ASD people they work with to help them get more used to dealing with change. For example perhaps you could fill things to a slightly different level each day. That way you are in control and hopefully should feel safe. It is probably also to do with feeling safe. When we are in that sort of situation you have to understand how people will react to be able to trust them to do things in your best interest. If you can't predict what they will do (or how things are) everything will seem new and unusual.

 

The following extract from another webpage I take to infer what I have just written above:

 

"We all try to make sense of our world and impose cognitive structure. This drive to create coherence often involves a leap of the imagination that is difficult for children with autism. They struggle to predict what might happen next or cope with novel situations on the basis of past experience. Instead they rely on routines which may become elevated to the status of rituals that have to be followed down to the smallest detail."

 

http://mikestanton.wordpress.com/my-autism...tanding-autism/

 

I hope you feel happier soon. All the best, David. <'> <'> <'>

[Mumble]

Thanks Baddad,

 

Not a load of old tosh at all - I think you've begun to put into words what I'm finding hard to even think about. Yes my need for routine and reassurance has undoubtedly increased recently, particularly over the last month or so. What I don't know if whether this is an actual increase or if I am just more aware of what constitutes if following my diagnosis and reading about AS. I am scared that it is the former; that for some reason my need for routine has increased and my scare-ability tolerence level has reduced dramatically.

 

Yes there are things going on at the moment that are making my worried:

• having to move but not knowing what my room will be like
• big meeting on Monday re uni support
• sister's off home for the holidays: I have noone to talk to plus I'm worried about mum driving down to pick her up - her driving is appalling and I'm terrified something will happen
• mum's having an operation in the summer and I keep thinking she's going to die on the operating table
• I don't know how to organise a funeral if she does die but it will be my responsibility
• I've got an oral exam at uni in September and I don't know what will happen in it and what happens if I fail
• I don't know what will happen in 2 years when I finished my course and I don't know who to ask
• I don't know how to do the social elements of my course and it worries me that future employers aren't going to be interested in me because I can't do these

But most people don't worry about these things so there is something going on that it making me susceptible to worry. The general 'unease' is something I can definitely identify with. I feel really on edge and jumpy most of the time - it's like I can't relax - I'm finding it difficult to get to sleep and stay asleep because there's so much I'm thinking about and then not having enough sleep is making me more irritable - I'm always alert to something that might happen.

 

The trouble is, I said most of the time, because I then have some times, like my lecture last Thursday evening, where everything is ok, I feel supported, I can be myself (and of course irronically then the bahaviours lessen). It's just that these ok times are few and far between and I can't predict when will be an ok and when not. When I walked into breakfast this morning, there was no build up to me loosing it - I went from totally fine and looking forward to getting on with my writing to not fine at all in a split second - and if I can't predict myself, it is very scary for me because I can't trust my reactions (how can I go and buy myself some food when I don't know how I might react to anything that might happen), and I can't help others to help me because I don't understand and can't explain myself.

 

I do wish I had someone to talk to and I do think I need some help but I have no idea who or how to approach anyone. This is one of the things I'm supposed to be having support with, but I still don't have that support. I had such a horrid time when I saw a counsellor before and I keep thinking about what she said about me 'may as well not existing' if I can't describe my feelings, and then I wonder if perhaps she's right, because it's not like I have much use in this world. I have a uni lecturer who doesn't know about my AS and who keeps asking if I'm depressed, but I don't know what depression is or what if feels like and how you know if you are or not - I've started to understand that people can in some way identify what it is they are feeling like at different times - I struggle to get beyond hot, cold, happy, sad and angry and many of the words that people use are totally meaningless to me - I have no idea what some of these other words 'feel' like - I don't really understand how people can 'feel' words.

 

I think I want friends, but I don't know how to make friends, keep friends or what to do with friends - I can read about reciprocating and such things and I understand the theory, but the practice if different because I don't pick up instantly - I can analyse and understand at a distance but not at the time. What I want is to understand what is physicaly happening (or not happening) that means people can but I can't 'do' these things - beyond just saying it's AS - someone with a broken leg we can take an X-ray and point out exactly where the broken bit is so we can see why it doesn't work - but where's the broken bit in me that causes my difficulties, what does the broken bit look like and why is it broken?

 

Mumble

[Mumble]

People with ASD are often more receptive to the small details (so whilst for a neurotypical the changes you mention might not make them feel it is a new experience for you as you haven't had to deal with it before) it seems like a new experience. Most people become a bit apprehensive and worried when doing something for the first time. That is normal. It is just because of the way your mind works you are much more suseptable to noticing when things are different.

 

Thanks David, and thanks for the link. It's the 'why' I'm trying to get at. Perhaps the problem is that I'm engaged in research myself, I do a lot of reading on causal mechanisms (what things are working together to give the effect we see - so my behaviour) and I need to understand things in a logical way.

 

I've read lots about 'differently wired' etc. but somehow that just doesn't do it for me - differently wired how - why - what does it look like? There was a bit further down in the article you linked to:

 

'Experiments have shown that they consistently use logic centres in the brain to work out daily life problems that we cope with automatically using our social instinct. They may become so good at using intelligence to compensate for their lack of social instinct that we may not notice. But life will always be a balancing act for them, requiring immense concentration. It can be like permanently living on the edge of a nervous breakdown and the smallest thing can tip them over the edge and lead to rage or uncontrollable panic attacks. You cannot use the remedial model to fix autism and then take the support away any more than you can give a pupil glasses then take them off him because he can see now.'

 

This begins to get at what I need - why in terms of using logic centres - but why use these, what does it mean to use these, what do others use, what causes the difference in usage.....

 

I thought the glasses example was very good - there seems to be the idea that I'll be given support to 'cure' my difficulties and then the support taken away - this is certainly the model that education and support services often work on in terms of support going when you leave school (if you got it...). But what also worries me, and maybe I'm taking it too literally - I started wearing glasses about 5 years ago - take them off me and I'm lost - my 'ability to see' is worse than it was before getting glasses - so has the support made me worse? Can this be applied to AS support?

 

A very confused Mumble

[Bat]

Oh Mumble,

 

What a rough day you are having, I hope you've managed to get something to eat, and I think you've done so well to list all the things that are bothering you.

 

Both Pipstrelle and Pipsqueak can't handle changes at all and their scare-ability goes right up, and very quickly. Pipsqueak struggles with lots of the same things that you do, and when she is she is unsure of things around her, her tolerance levels go right down. So because it's a Saturday and she usually goes swimming on a Saturday, she's been very upset this morning because her routine has changed and Dad has made a picnic so they can go out this afternoon. Then she discovered the towels (new ones) still had labels on them, and some of them had stickers on, and she can't manage being near stickers, and dad mentioned the word, so she sat and screamed and sobbed until I got up the stairs to her and we had to ask Dad to leave the room. She's gone off quite happily now, but at first she wasn't convinced that she could manage being out with dad and big sister beacuse of the sticker thing. I know you and lots of others on here understand that, but to anyone else, it's huh?????

 

Do you have anyone you can talk to about how worried you feel? Can you talk to your Mum or sister about helping you find the right person to contact? Can they find out if this person has an e-mail address so that you can e-mail them things if you're not sure how to approach them or what to say? Pipsqueak can't ask her friends to play, I have to ask them and then explain the game to her, so I do understand how hard it can be to go up to people.

 

I can't tell our girls which bits are broken, but I tell them that their brains work in brilliant ways that mine doesn't and they've taught me completely different ways of looking at things, so, as a mum, I'm hoping if you can e-mail your Mum and sister the worries that you have, they might be able to help you sort them out or find you the right person to help. Your Mum might be happy to chat to you about her operation and reassure you about the risks and how you feel; maybe you can even work out a plan together of who can help if things don't work out the way they should. The Uni might be able to send you a picture of your room (we do this with our girls before holidays etc so they know what to expect). Someone at Uni will be able to help with regards to teh exams and what to expect, and also what will happen after the 2 years.

 

I hope today starts getting better for you soon.

 

Bat <'> <'> <'>

[Shnoing]

...

I lost it big time this morning in the breakfast hall at uni (much to the amusement of the other students). Why? Because they'd shut the shutters at the wrong time and so interferred with my breakfast routine and their 'help' when they saw how distressed I was didn't help - but then it doesn't make sense that I can't eat cornflakes that have been brought out of the kitchen rather than passed through the middle hatch, it doesn't make sense that I can't drink the orange juice they got me because they haven't filled it to the correct line. It just doesn't make sense that I can't cope with such really insignificant changes which most people don't even notice and that I can't then cope with the 'help' that people try to give me - now rather than having breakfast I've had nothing and I'm hungry, but I'm too scared to go to the supermarket on a Saturday because of the noise and because it wasn't in my plan I don't know what to get to eat.

 

My question I suppose is what is actually happening in me to cause these reactions? ? something like, because of AS, I have............and this.................results in.................because................. . I just need some help filling in the blanks.

I think what you have experienced is a phenomenon called "overload": There was too much information at one time for you so you couldn't process all of it. You have to watch many many persons in the situation you described: 1. the one who's shutting the shutters, 2. the one who brought you the cornflakes instead of allowing you to fetch them as usually, 3. the one who brought you the orange juice (filled incorrectly) instead of allowing you to get it as you normally do, and so on. You have to analyze their faces in order to know how to react towards their actions and you have to try to be "friendly" to them because they mean to help you. Having AS, you have to process all these informations one after the other - you have to conscientiously think about it. NT persons would just use their subconsciousness, which can do parallel processing (much quicker) - they don't even have to think actively about it, it just happens.

Perhaps you can "rehearse" some routines which would be applicable in similar, unexpected situations. Motto: expect the unexpected. If you are able to use these routines (in the future), there will be much less information you actually have to think about "actively" so your overload will be reduced.

 

... Yes my need for routine and reassurance has undoubtedly increased recently, particularly over the last month or so. What I don't know if whether this is an actual increase or if I am just more aware of what constitutes if following my diagnosis and reading about AS. I am scared that it is the former; that for some reason my need for routine has increased and my scare-ability tolerence level has reduced dramatically.

...

When I walked into breakfast this morning, there was no build up to me loosing it - I went from totally fine and looking forward to getting on with my writing to not fine at all in a split second - and if I can't predict myself, it is very scary for me because I can't trust my reactions (how can I go and buy myself some food when I don't know how I might react to anything that might happen), and I can't help others to help me because I don't understand and can't explain myself.

You are watching yourself more critically, of course. It's like you just tick a box as soon as you see any AS trait in your behaviour. You cannot "unlearn" AS so logically you cannot learn to become more AS. Since I self-dx'ed myself I keep counting AS traits and I'm surprised to find them at any occasion. What could be helpful in case you feel "overload" coming is some sort of meditation; in this respect you should rehearse to tell others to just let you alone so you are able to concentrate.

...

I think I want friends, but I don't know how to make friends, keep friends or what to do with friends - I can read about reciprocating and such things and I understand the theory, but the practice if different because I don't pick up instantly - I can analyse and understand at a distance but not at the time. What I want is to understand what is physicaly happening (or not happening) that means people can but I can't 'do' these things - beyond just saying it's AS - someone with a broken leg we can take an X-ray and point out exactly where the broken bit is so we can see why it doesn't work - but where's the broken bit in me that causes my difficulties, what does the broken bit look like and why is it broken?

My interpretation of "friendship" is that you do things together - of course it should be something of mutual interest. It takes several months for a friendship to develop, so take your time. I usually ask my friends "what's on" so they have a chance to tell what's moving their thoughts and usually I am able to react properly to their tales. That doesn't mean that I'm telleing them what I'm thinking because usually it's just informations about objects instead of people and therefore of no or little interest to them.

...

I've read lots about 'differently wired' etc. but somehow that just doesn't do it for me - differently wired how - why - what does it look like? There was a bit further down in the article you linked to:

 

'Experiments have shown that they consistently use logic centres in the brain to work out daily life problems that we cope with automatically using our social instinct. They may become so good at using intelligence to compensate for their lack of social instinct that we may not notice. But life will always be a balancing act for them, requiring immense concentration. It can be like permanently living on the edge of a nervous breakdown and the smallest thing can tip them over the edge and lead to rage or uncontrollable panic attacks. You cannot use the remedial model to fix autism and then take the support away any more than you can give a pupil glasses then take them off him because he can see now.'

...

"Social instinct" is a part of the brain where information is stored according to the emotions connected to the information. If you (or anyone else) can feel emotions, this system is a very effective one. If you feel a certain emotion, you can easily retrieve all the information bits which have been saved while being attached to the "fitting" emotion bit (Normally, these would be informations about social situations). If you don't feel emotions, this part of your brain (or memory) just doesn't work like that.

My personal view is that AS persons feel emotions when dealing with their "intense interest" so all these informations are stored for quick access. This would be an explanation why AS persons can have so much knowledge about facts while being "socially inept".

Mumble, <'> <'> .

Edited June 9, 2007 by Shnoing

[bid]

Only offering some thoughts, and trying to be 'practical' rather than 'intellectualising', IYSWIM...

 

If you went away to uni to do your first degree, maybe you can think back to any strategies or planning that you used then that successfully helped you live in halls, cope with lectures, organise your work, etc.

 

Maybe it would be good to look back and recognise what you have achieved? A first degree, possibly a PGCE, actually teaching in a school (I remember you said your teaching and class-room management were good), applying for and being accepted for your PhD...

 

I'm not trying to trivialise the difficulties you are experiencing at the moment, but I do think it does all of us good to try and focus on some positive achievements when things are rough <'> <'>

 

Hang in there!

 

Bid

[Mumble]

Thanks everyone - I had some lunch (not exactly the most healthy or well balanced more a case of first thing I can find that seems edible in the supermarket and get out quick) and I'm feeling a bit better.

 

It does worry me how much my mood fluctuates and how unpredictable I am to myself, let alone to other people. But I guess that's because I am reacting to a world that to me is essentially unpredictable. Perhaps I'm feeling happier now because I've been sat in my room without any lights on and it's quite grey outside and mega ear-plugs so I've essentially blocked out the world and with that I can cope.

 

Bat, the sticker thing makes total sense to me. Unfortuately I can't talk to my mum because she won't accept my AS - that's why it makes it so difficult for me to talk to her about anything becuase AS is integral to who I am and how I respond - without accepting that she can't accept my responses. The only people I talk to are my tutor and supervisor at uni - they have been fantastic but I do worry that I'm a burden on them.

 

Shnoing - it is overload, but I can't expect the unexpected otherwise it would be expected not unexpected. I don't know how to make friends I think because I don't know how to do things together. Even with my sister, I do things alongside on my terms - I think this is probably whats called give and take.

 

Bid you're absolutely right I do need to think of the positives - and this is certainly the position my supervisor and tutor keep taking and they'll reel off a similar list to yours - the thing is I don't accept that I deserve to be where I am - I think it must have been a mistake in admissions and no matter of people telling me is going to convince me that I actually derve to be here or that I actually belong here. I've always felt like an outsider - as if I'm somehow floating on some parallel plane to everyone else - maybe that comes back to the together rather than aside things. My position at college is very much alongside rather than with other students - I don't know what it feels like to be 'with' and I don't know how to move to a with state - does that make any sense at all As for 'coping' in my first degree, I didn't really - I got by on academic ability so some of the major difficulties were ignored - I was sent for counselling then and I had a lecturer in SEN who took an interest in me - helped me with some skills but nothing went further than that because outwardly I was coping (not having the level of bullying I'd had in school made a huge difference).

 

Mumble.

[seasparrow]

I share similar 'feelings' and anxieties like yours.

 

When I was married my wife would make me the same sandwiches every day. Some days she would forget, or not have the right ingredients, or make them wrongly, and this really threw me. To this day, if I am used to something I expect it to be the way it always is. If it is not, it still throws me and I have to deal with the situation as it arises. What I have got used to is looking at the problem, finding alternative outcomes, and taking a course of action that best suits my immediate needs.

 

Sometimes, I don't eat though because its too much for me to think about and I cant find the solution I want. Even today, I live with my mother (after being away for 10 years) and she cooks for me. Sometimes she makes the food differently and I have been known to shout at her because it is wrong (and I'm 36). In an instant I have to look at what is wrong and think about the consequences. I always end up with the fact that the food can still be eaten. I don't enjoy it as much, because it is not the same as always, but I have to make myself be OK with it in my head... but again, this doesn't work every time.

 

Ultimately, having the shutters closed and your food given in a different way meant you had to adjust your mind to deal with and accept that way of having your breakfast. But what you needed to do was take a time out to put your mind into accepting this before it can happen.

 

Having AS means we constantly analyse things and look for answers. But that can not always happen. If I have something that I can not solve I have to put it in 'holding' (in my brain) until I have more information. But asking for what is actually going on in your brain is thinking too hard. If the best doctors dont know then what chance do you have... yet? Some things you have to tell yourself to just 'let go'

 

As for emotions, I think I was about 26 when I understood the word 'anxiety'. When I get 'butterflies' in my belly this was a physical feeling and because people kept talking about anxiety I looked at my body in situations where anxiety would apply and I noticed that on more than 1 occasion I had these 'butterflies'. I don't know if that is anxiety but its the best I have so far.

 

I still don't understand many 'feelings' and I always try to find a physical feeling to relate to an emotional feeling but there are many emotional feelings that I just don't know yet. Love being one of them. Each time I think I feel love, it changes.

 

I look for consistency in feelings and there are none that I can see. So I don't really have any understanding apart from my 'guesses'. This works enough for me to co-exist with normal life and sometimes I am upset that I can not understand.

 

Ultimately, I have concluded that emotions can be more of a burden than a blessing and I tell myself that I am better off without them. Emotions are what cause people to be upset, have fights and go to war. Without emotion, people would talk logically and 'coldly' and avoid these things. When was the last time science went to war?

 

Not sure if I made any sense so I'll end it there.

 

Just remember.... you are not alone! <'>

[dooday24]

sending u loads of these <'> <'> <'> <'> <'> love donnaxxx

[baddad]

Hi mumble - bit pushed for time, so forgive me if this is repeating things that have already been said, but a couple of other quick thoughts'...

Firstly, the things you listed as worrys...

They ARE things other people would worry about too, it's just in your case the worry becomes 'overwhelming'...

If you look at the list, many are things that simply do not have a solution, because you have to wait for the full 'facts' to evolve before you can see it, and that evolution depends on time critical (unknowable) information. They're 'what ifs'...

Others in the list are things you can actually pursue answers to (even if only by library/internet research if you don't have/feel there isn't anyone you can talk to directly about them... If you can try to concentrate your energies on the latter group, it may help you to worry less about the former (?)

 

What I want is to understand what is physicaly happening (or not happening) that means people can but I can't 'do' these things - beyond just saying it's AS - someone with a broken leg we can take an X-ray and point out exactly where the broken bit is so we can see why it doesn't work - but where's the broken bit in me that causes my difficulties, what does the broken bit look like and why is it broken?

 

I think one of the most difficult things is there ISN'T anything 'broken', so it's impossible to qualify... one of the difficulties in the analogy that's often made with physical disability is you're talking about something which 'exists' - i.e. a broken leg - and a physical comparison that 'works' because we have a 'before' and 'after' (i.e. a person with two working legs and a person with two non-working legs)... You couldn't apply that analogy to, say, a dolphin, because it hasn't got legs in the first place... Some great philsopher said (don't worry - I heard it on a Ricky Gervaise pod-cast! ) 'If a Lion could speak English, we still wouldn't be able to understand it' - the point being that it's frame of reference would be so different to a humans that it still wouldn't make sense however it was expressed. Similarly, I would never be able to understand the intricacies of 'female' logic

 

The only point of reference you have is your own, and those identified 'trait's of AS/ASD that seem to apply to you. That 'mix' is going to be unique,and trying to work out what's going on with you by comparison with people who aren't you can only at best provide 'clues' rather than answers.

 

I really do think (as bid suggested, i think) that you may need to do some looking backward to inform on the way forward. Comparing who you are NOW with who you WERE will help to identify the differences GOOD and Bad and maybe what factors are/have contributed to those changes...

I sort of touched on that in my first post - about putting the past into context in light of new information (your dx)... Your dx didn't change you in any way shape or form, but it did make a huge difference to your 'awareness' of you, and I think you may be struggling to slot those pieces together...

 

L&P

 

BD

[Guest Lya of the Nox]

sounds like your routine was changed

and u have way too much going on

u need to eat, can u keep cereal bars around, would u eat them?

mog is always worse if hungry

you are not borke hun, things just needed to be 'tweaked' for u to be comfy, and we are all like that

thinking of u

 

 

x

[bid]

OK, I'm going to start with a comprehensive disclaimer!! I apologise in advance if I come across as smug/self-satisfied/plain annoying, etc, etc, etc I don't mean to be any of these, I'm just trying to add another perspective based on my own experiences as a Spectrumy person, and the daughter of and mother to someone with AS.

 

BD wrote about the need to work out our own personal perameters when it comes to routines, coping strategies, etc.

I think we need to explore these within a larger framework too, of what is realistic and reasonable within the wider context of the 'real world'. Within this appear those two difficult concepts of compromise and collusion

 

As an example, yesterday I was in a music shop as my DD's flute needed repairing. There was also a dad in there, with two small boys who were plinkitplonking on keyboards, shaking maraccas, etc. My auditory sensory probs went into over-drive, which meant I found it really hard to think and talk to the guy in the shop aboput what was wrong with the flute. I thought about saying politely to the dad that i had a problem with my hearing, so could his boys stop just while I sorted out what i needed to do. But then I thought, hold on: actually maybe the dad and the guys in the music shop think it's great to see little kids feeling confident about exploring instruments, etc, or maybe they've both got AS or ADHD and never in a million years are they going to be able to be quiet...So I didn't say anything, and I did manage to sort my business out, even though it was horrid and difficult and I felt as though my nerve-endings were being sandpapered!

 

BUT, a while back I was in a counselling session, and there was a fan going in the room, which had a similar effect on me. I felt it was completely right to ask for it to be turned off, as there was no way I could make any useful contribution to the session while it was running.

 

So there are situations where it is reasonable and realistic to expect compromise/support, and then there are instances where it isn't either realistic or reasonable. In Mumble's example of the dining hall or the tables in a tutorial room, in my opinion it isn't going to be realistic or reasonable to expect everything to be done according to one person's routine, however needful that routine is for that individual.

 

Again as an example, I line my dirty washing-up in a particular way at home, and that's nobody's business but mine and there is no reason why I should have to change that routine for anyone else. BUT, I actually found myself in a tug-of-war over a mug with a work colleague because he wanted to arrange the dirty mugs one way, and I wanted to line them up and felt quite agitated that he wasn't doing it 'right'. I won (probably because he is too much of a gentleman to hit a woman! ), but although, yes, I was acting on an autistic imperative, I was actually just being a pain in the butt!!

 

Don't know if any of this makes any sense Deep breath, and preparing to run away very fast...I think it can be very easy for Spectrumy people to see ourselves as The Whole, and forget that we need a degree of compromise to live a full and independent life in the wider world.

 

I don't think for a minute that I have got this fine balancing act between compromise and colluding with myself right at all, but I do think it needs to be a constant internal dialogue.

 

Apologies again if I have offended anyone...my comments are meant as general observations (Mumble, I know I mentioned your dining hall difficulties, but hope I balanced that with my self-flagellation over the mug-incident!! )

 

Gotta dash now, 'cos I've rambled on so long I'm late for work!!

 

Bid

Edited June 9, 2007 by bid

[Bat]

Hi Mumble,

 

I'm glad you got something to eat, but I'm sorry you're not able to talk to your Mum, but I think it's good that you can speak to your supervisor and tutor.

 

I'm just off to sort those towels out for pisqueak now....

 

Bat

[pearl]

Mumble, when you posted your list of worries, you sounded so much like JP.

 

He worries way into the future just like you, and worries about things that may never happen.

Then goes into a downward spiral.

 

He seems happy & contented on the outside much of the time & it fools people, but then he'll have a meltdown & it all comes spilling out, the stuff he's been bottling up for weeks.

 

All we can do really is reassure him that things have a way of working out, & not to worry too far in advance.

Sufficient unto the day is the evil thereof.

 

Its really sad you cant talk to your mum. But there are lots of forum mums (and dads, and friends) you can talk to on here any time you want.

 

Hope you have a better day tomorrow.

[hev]

Its really sad you cant talk to your mum. But there are lots of forum mums (and dads, and friends) you can talk to on here any time you wa

i will be your forum sister mumble im old enough to be your mum but i like sister better

[Bard]

The more I read your posts, pearl, the more disconcerted I become. Too many coincidences!

 

Sufficient unto the day is the evil thereof is my focus mantra most days!

I put my worries into boxes in my head, and deal with one day at a time, one box at a time. Otherwise I know I will overload and fuse something.

 

I think Bid made a huge amount of sense to me. Sometimes B can manage, and other times, exactly the same thing with one minute variable is too much. And so it goes.

At least on this forum, there's always someone who will listen and try to help.

<'> >< <'>

Edited June 9, 2007 by Bard

[baddad]

[bid]

Again as an example, I line my dirty washing-up in a particular way at home,

 

yes, i do that too... I line it up all along the worktop. Then i pile on another layer. Then another layer.

 

When things start falling over and breaking i do the washing up!

Whatta system!

 

L&P

 

BD

[bid]

yes, i do that too... I line it up all along the worktop. Then i pile on another layer. Then another layer.

 

When things start falling over and breaking i do the washing up!

Whatta system!

 

L&P

 

BD

 

Yerse...I hope you notice how neat it all looks graded by size and type when I've done the washing up!!

 

Bid

Edited June 9, 2007 by bid

[wishingwell]

Mumble <'>

 

I've found out more on this post than I have from years of talking to dietitcians. Every aspect of food is a huge problem and my sons dietician has told me some s**t over the years.

 

Take care of you and good luck with your career! <'> <'> <'>

[pearl]

The more I read your posts, pearl, the more disconcerted I become. Too many coincidences!

 

Sufficient unto the day is the evil thereof is my focus mantra most days!

I put my worries into boxes in my head, and deal with one day at a time, one box at a time. Otherwise I know I will overload and fuse something.

 

I think Bid made a huge amount of sense to me. Sometimes B can manage, and other times, exactly the same thing with one minute variable is too much. And so it goes.

At least on this forum, there's always someone who will listen and try to help.

<'> >< <'>

 

"This too will pass" is another one I say a lot. Helps me endure the bad times & enjoy the good.

[pearl]

Yerse...I hope you notice how neat it all looks graded by size and type when I've done the washing up!!

 

Bid

 

JP does the washing up in our house. He doesnt think anyone else is capable.

Me, its washing I obsess about. Size of loads, colours to put in, pegged out just so with certain pegs for certain items... & I'm NT, at least I was when I last checked!

[bid]

Me, its washing I obsess about. Size of loads, colours to put in, pegged out just so with certain pegs for certain items... & I'm NT, at least I was when I last checked!

 

Alledgedly!

[Bullet]

These small things that are bothering you are not small to you. They are, in fact, helping you make sense and helping you cope with the bigger things. I'm ok with food and drink levels, but I get really panicky and anxious and irritated at other minor things. If someone is a minute late, if DH isn't sitting next to me in a set way, if the bread's been moved to a different part of the aisle. Tiny little things that can really affect me if they change. When everything is going well I mentally feel charged, or like a full drink. When things are wrong it's as though the drink has shattered and the drops of liquid are flying around and bombarding me and I have to keep an eye on them all. And with the small things, the minor aspects that seem so trivial, well, it's those aspects that I cling onto when other things are too confusing. I may not be sure where to sit (I could rarely eat in school or university dining halls personally) or what I should do next, but if the chairs are how they should be and I've got to the place on time then that'll help.

In terms of what to do, well, I've always been a huge daydreamer, I frequently lose track of things and zone out quite often so when things start to bother me I accept that they will bother me and then use coping mechanisms, either by retreating off into my own dreams (at which point I'm unaware of anything around me) or (and this is safer) counting, starting off at 100, then 99, 98, 97 and so forth to one. That's if I realise I need to calm myself, if I don't I sit there panicked and fuming and because I get more withdrawn, rather than vocalising my concerns if someone tries to speak to me at that point I feel worse. I accept that, for myself, I'll probably always be like this, but if I can cope with it when it happens I'll be ok.

[mandyque]

I notice that nobody has mentioned this yet, but it might be something that will help you. My dd was put on Prozac because her anxiety was causing too many problems for her. She would get overwhelmed by things very easily and then she would go into meltdown mode. The paediatrician suggested we try medication after other methods were tried and failed and it has made a difference. She is less anxious and less likely to go into meltdown now, obviously her autism will always be there, but this helped her. Perhaps it's something you could think about, maybe you could discuss it with your doctor if you think it may help you too.

[hev]

JP does the washing up in our house. He doesnt think anyone else is capable.

Me, its washing I obsess about. Size of loads, colours to put in, pegged out just so with certain pegs for certain items... & I'm NT, at least I was when I last checked!

pearl im like that,totally obsessed with washing,size of loads,colours etc,when my washing machine broke i felt really ill very obsessed by fabric conditioners and washing powder,how sad is that,when a new one comes out i get v excited

[pearl]

pearl im like that,totally obsessed with washing,size of loads,colours etc,when my washing machine broke i felt really ill very obsessed by fabric conditioners and washing powder,how sad is that,when a new one comes out i get v excited

Ooh Hev I'd rather be without a cooker than a washing machine, you can always get take aways! And its only my eczema prevents me from trying every product going, I have to stick to same one its soooo boring.

[pearl]

Alledgedly!

 

Hee hee its all a question of degrees innit. Compared to mr pearl, his entire family & JP I'm NT. Compared to the rest of the world.... I dunno. Have often felt on the outside looking in, if you know what I mean.