AS hubby. Nasty? or AS?

[mummy]

Yesterday after a couple of phone calls i decided that today me and the children would go to a particular place followed by a visit to my dad's as it was nearby and we don't see him very often.

Hubby then suddenly said 'Why don't we all go?!'

 

Well this MADE MY DAY because my dad has several dogs and I know that hubby isn't always to keen on going there.

'That would be lovely' I replied 'but I know you don't like going there'

'I like your dad' he says 'it's just the animals I don't'

 

Later on when we were excitedly discussing our trip hubby said to youngest 'No I'm not coming'

I said 'what do you mean? you suggested it, you said why don't we all go'

 

Hi response was 'I didn't mean it! I thought you would have realised i was joking!'

 

So there you have it - He sayd something really thoughtful that made me exceedingly happy, then he admits he lied and expressed surprise that I believed him!

He then wondered why I was upset and angry

 

I know his AS means he finds it hard to consider others feeling but I don't know whether this goes beyond that.

Mummy

[pearl]

Ok 29 peeps have looked at this, I cant stand the suspense any longer ...

Heres my take: AS is no excuse to behave badly. He made a joke that went wrong. Once informed of its non funniness, he should have apologised, just as for instance, I as an NT would apologise to my AS son if one of my jokes was misunderstood. It works both ways.

 

Did he apologise? If he did, let it go. If he didn't, make sure he knows that would help you feel better. <'>

[doingmyheadin]

I agree Pearl,

 

AS is no excuse for bad behaviour. As an adult he should apologise and try and understand why it was not funny.

[Cat]

OK well I have a totally different take on this to those who have posted so far. This sounds like something that my elder son would do when he had committed himself to doing something and then realised that he could not follow it through. DS2 will attempt to mirror what he 'thinks' an NT person would do or say at that point and if he thought that saying that he was joking was it, then he would do it. Adults with AS will often take the path which they believe will give them the least grief. If I pointed out to my son that he would usually not do something, like visit someone who has dogs and he does not like animals, I might just as well say to him don't come. I would have given him negative thoughts which he would run around his head and they would gather steam. Once my son has built up a negative picture then it would not be a case of not wanting to go he could not go. So it's not so much a man behaving badly it's more a man behaving inappropriately. Being inappropriate is part and parcel of an ASD. I keep trying to tell my husband that just because my son is 21 does not mean that he has grown out of his AS and by this point in his life he should know better - I have not read anywhere where it says that this will happen. What does happen is that adults with AS tend to learn what is the 'socially acceptable' thing to do and they do it. However that does not mean that they never make a mistake.

 

Cat

[pearl]

Some good points there, Cat. As I said, just my take on what happened, I'm no Oracle I think "inappropriate" is a better word to use than "badly" on reflection, much less emotive.

 

Whatever the more complex reasons for someone behaving like that though, I think it is still appropriate for anyone, NT or AS, to be told clearly if they have unintentionally hurt someone, and that a swift apology & an intention to learn from the experience the best way of soothing hurt feelings.

[bid]

I have a dx of AS, and my interpretation was similar to Cats'.

 

Perhaps he was trying to 'please' you and be how he thinks you want him to be by agreeing to this visit.

 

It may then have panicked him as he thought about the reality of the visit.

 

Then poor communication skills meant he c*ocked up 'getting out' of the visit, i.e. saying he was 'joking' all along. Probably easier to say that than to try and verbalise to you how he really feels, especially as 'naming'/recognising emotions even to yourself is hugely difficult with AS.

 

Or it may not be anything to do with AS, and he may just have a nasty side

 

Bid

[Mumble]

Speaking as an AS adult, I was quite upset/irritated (not sure which) by the assumptions made here. I try so hard every day to 'fit'; to do what I think is expected of me. One of the major disagreements I have with the AS dx criteria (speaking from a personal viewpoint) is the assumption that we don't care what others think about what we say/do. Yes it does depend on who the person is, but often I care very very deeply about doing what I think someone wants me to do, saying the right thing, doing the right thing, in the right way. I spend so much time worrying about that that I often neglect to think about what the impact of making the 'right' decision will be on me. I will agree to things because I think I'm supposed to or don't know how to explain my difficulties with something and say I can't do it (because often they are something difficult for an NT to understand - no disrespect meant) and then get really worked up in my head thinking about all the what ifs and the activity I've agreed to that I know I can't do which will distress me to the point where I'm working at the level of that's the only thing happening and it dominates all my thoughts.

 

On it being funny: sometimes I can say things without knowing they're funny or without it coming across as funny as I don't have the 'right' emotional expression to match my language skills so I can be misinterpreted and come across as saying the wrong thing - it's like I have a poker face when telling jokes, but of course part of joke telling is the non-verbal, so it doesn't always work (though sometimes that dead pan expression worked very well ). I can't agree that he must try to understand why it wasn't funny: I would be upset if someone expected the opposite - that I try to understand jokes that I just don't/can't get because of language issues. Yes by all means explain clearly and unambiguously that, for instance, when talking about family, jokes of any sort are not appropriate, but I'm not sure you can go much further.

 

One other thing occurred to me - at the beginning of your post you said that you decided what you would do and you made the arrangements. At any point in this process did you consult your husband as to what was happening - if someone sprung this on me then my reaction may well be inappropriate - I need to be in control of what I do and when and being told something else takes away that control and makes me feel very uneasy - at which point I appear more autistic, if that makes sense. Maybe you could involve him from the start - "I was thinking that in two weeks time I would visit X and take the kids. Would you like to come - you do not have to - if you don't want to come, you could do Y instead".

[bid]

It may also be that 'I was joking' is a sort of 'learnt phrase' for getting out of socially tricky situations?

 

Bid

[Flora]

Perhaps I've missed something, or read something that isn't there, because I really really can't see 'the problem'.

 

First of all, going by the premise that something is 'only a problem if you see it as one', I can't understand why it was such an issue if he didn't go with you, and also can't understand why you were angry or hurt. Sorry I'm not being obtuse, I just really don't understand what the issue is with that. Perhaps that's why all my past relationships have been unsucessful, and it's a major fault with me that I can't see what the problem is whether he went with you or not, or even that he said he would then later said he wouldn't. (I'm assuming here that there is no 'special' reason (ie illness) beyond the norm why he should visit your dad).

 

This kind of cancels out, in my mind, the rights and wrongs of his reasons for not going. If he was 'playing games' with you, then yes that would suggest something deeper and more sinister, but if you take him at face value then he hasn't really done anything wrong as such.

 

this of course is just my opinion, and as such I'm fully prepared to accept that it's a bit skewed

 

Flo'

[Cat]

Mumble you said it so much better than I did. My son also spends so much time trying to 'fit in' that because of this he fails to do just that I have always said that my son simply does not know how to 'be' with other people and that includes those who he loves. That does not mean that he is doing anything wrong it means that our expecations of him are too high.

 

Bid again you said it better than I did. Because I know that my son also uses phrases which he has learnt and hopes that will help to get him out of socially tricky situations.

 

Flora my take is that quite a few people expect adults with autism to know better, by the time they are adults and to be able to deal with NT situations in an NT way. From my experience of living with an adult with AS that is never going to happen and why should it. A diagnosis of AS is for life not just for childhood. I, know that my son would never play games with me it's just not part of who he is or what he does. Like you I do not see this as a big issue - but then maybe I am missing something to

 

Cat

Edited August 10, 2008 by Cat

[bid]

Flora my take is that quite a few people expect adults with autism to know better, by the time they are adults and to be able to deal with NT situations in an NT way. From my experience of living with an adult with AS that is never going to happen and why should it. A diagnosis of AS is for life not just for childhood. I, know that my son would never play games with me it's just not part of who he is or what he does. Like you I do not see this as a big issue - but then maybe I am missing something to

 

Cat

 

I quite agree, Cat.

 

I said on another similar thread that we wouldn't and shouldn't expect NT emotional responses from our kids with ASD. This must also hold true for adults with ASD, because with the best will in the world, it ain't never going to happen!

 

I think a great deal of the 'unhappiness' in ASD-NT relationships is this expectation of NT emotional responses from the ASD partner. Of course, this shouldn't preclude apologies where appropriate.

 

Bid

[bid]

I know his AS means he finds it hard to consider others feeling but I don't know whether this goes beyond that.

 

Sorry, but I've just re-read this sentence!

 

Having AS does not mean you find it hard to consider other people's feelings!!

 

If that were so, I certainly wouldn't be able to do my job for example (caring for children and young adults with severe learning difficulties and complex medical needs).

 

And within my own life I feel I spend all my time desperately trying to consider other people's feelings, often at the expense of my own wishes, because I feel so bound by promises and responsibilities.

 

Bid

Edited August 10, 2008 by bid

[Nic m]

hi, mummy,

 

that must have been quite hard for you.

I spend my life fitting round my daughters feeling and what she wants to do, as she is getting older it has become easier as i kind of know what she can cope with and what she really struggles with.Sometimes she surprises me when she chooses to try something and it never fails to delight me.

 

I am assuming that you are used to doing many things that don't include your husband, because you know he struggles with doing them (i may be wrong) so when he offered to come along, and included himself in the activities you and your children got excited and were happy that he wished to accompany you?

To then say he was joking would upset me, not just because i would have already been happy but would already have run through scenarios to ease things for him. The fact that the children would have also been included in this would have upset me too.

How do you tell a child, your Daddy was just joking?

 

Intentional or not i would want that understood.

 

I don't know that i think it is nasty but i do think i would have to discuss this further.

Any relationship is hard work, and the give and take has to be recognised on both sides.

 

I hope you still get to enjoy your day.

 

Nic xx

[Bard]

It may also be that 'I was joking' is a sort of 'learnt phrase' for getting out of socially tricky situations?

 

Bid

 

That's exactly how B uses the expression, often if he knows he's gone too far with his sister and she's upset and angry.

He would definitely also use it in order to get himself out of a situation that he wasn't coping with, or where he'd had a change of heart when the reality of the situation dawned on him. " I was joking, I didn't really mean that I wanted to..." is often followed by relief when he's allowed to opt out, and then amnesia (face-saving) about ever having said something in the first place.

If I told him that the sequence of events was inevitable, he'd get very cross, then usually silent.

I always have something to distract him with, so he can focus on something he enjoys whilst enduring something we can't get out of.

For example, on the London Eye, with G and a friend, he wanted to back out but we couldn't. So he sat and drew warcraft figures in a little notepad and didn't look up once. And that was OK with everyone. Sometimes it's just too late to stop, or would impact very badly on others, so he has to compromise.

My OH never comes on visits to family, he can't drive and feels trapped if he can't leave when he wants to. He can cope if family visits us, but after a couple of hours he goes for a walk. For several hours.

[pearl]

The main thing that has stuck in my mind after listening to Ros Blackburn at the conference, was her plea: if I'm doing something wrong, tell me. I wont know if you don't tell me.

 

Her words, not mine. Now, whatever the intentions behind mr mummy's words (and I fully accept they may be more complex than I first thought) the result is that his wife is upset. So what do you do? Ignore it, because he didnt mean it the way it sounded? Or tackle it in the safe confines of a loving relationship, in confidence and not to point score but to improve the way we communicate with each other?

 

And before anyone jumps on me, I am not saying that Aspies always get it wrong & NT's always get it right, far from it. It should be a two way process. If I make a joke that backfires (has happened more than once on this very forum ) even though my intention wasnt to upset anyone I would immediately apologise if that is the result. And I would be glad to have been told rather than have someone silently seething with resentment.

 

*waits for flurry of pm's explaining exactly how I have upset peeps*

[Cat]

The main thing that has stuck in my mind after listening to Ros Blackburn at the conference, was her plea: if I'm doing something wrong, tell me. I wont know if you don't tell me.

 

Seen Ros and thought that she was brilliant BUT she is only one person with autism not AS she makes a very big deal of including this in her talks, along with the fact that she does not and never has wanted any friends. One person with autism does not speak for everyone. And because this lady does have autism then I fully expect her to see things from her own point of view. Hopes that makes sense.

 

Ros also goes on to speak about how autistic people should not expect to free load all of their lives and must gain the skills needed to make their own way financially through life. While I have the greatest respect for Ros if everyone with autism tried to make a living in the same way that she herself is doing then she would be out of a job. It is not always easy for a person with autism to put themseleves into someone else's shoes.

 

Now, whatever the intentions behind mr mummy's words (and I fully accept they may be more complex than I first thought) the result is that his wife is upset. So what do you do? Ignore it, because he didnt mean it the way it sounded? Or tackle it in the safe confines of a loving relationship, in confidence and not to point score but to improve the way we communicate with each other?

 

I think that you try to understand how and why this happened. Of course none of us were there so we only offer our own view point but I do see many of us agreeing that when the going gets tough for someone with AS they try to opt out using whatever social skills they have even if they turn out to be inappropriate. Yes I could point out to my son when he says something and then laughs that what he has just said is not funny, but because I can usually sense his anxiety levels raising at that point I usually do not. I might well try and find a more appropriate way for him to interact in future but again I ask myself how difficult it must be for him to spend his whole life trying to find the right words to say that are not going to offend anyone because NTs expect no less from him.

*waits for flurry of pm's explaining exactly how I have upset peeps*

 

No not from me. There is nothing wrong with a healthy debate and at the moment I see this as such

 

Cat

[baddad]

Actually, coming at this from a completely different angle - this just sounds to me like controlling behaviour, neither 'typically' AS or NT, just a personality trait that can apply equally to both. Some people just seem to like wrong-footing other people, and it's much more to do with personal psychology than any medical (or lack of any medical) condition.

As always, I'll qualify that by saying that I don't know mummy's OH from adam, so I'm basing that purely on what's written in the post and it could be miles wide of the mark...

Two other considerations - how willing (and how genuinely) is the person to apologise when they have the unintended insult pointed out to them, and how often do these kinds of things happen? While it's absolutely true (while completely contradictory!) that people with AS should not be expected to respond with 'NT' understanding, nor be allowed a 'free pass' on the basis of that, the simple truth is that while the learning curve is longer/harder, rote learning should have made some impact on this area in an adult functioning at the kind of social level that includes relationships, children etc. If it's happening very often at home, but isn't happening in other situations or creating problems outside of the home environment then it's much more likely to be a context specific behavioural 'norm' than an unconscious social gaffe

 

 

[Cat]

How do you tell a child, your Daddy was just joking?

 

How would you explain that Daddy could not take a child swimming if he was in a wheel chair unable to walk? You would explain that Daddy has a disability and which makes some things in life impossible/difficult for him. If we are expecting schools to take disabilities on board then those of us who live with them have got to do our bit to.

 

 

Intentional or not i would want that understood.

 

How can you make someone with a communication disorder understand something that does not make sense to them. How do you square a circle? Surely we look for shared meanings and understandings with the people whom we share our lives.

 

Cat

[Flora]

Of course, he could have just changed his mind! Surely something as simple and straight forward as a casual visit to a relative is something that people have freedom over when it comes to choice? As I said in an earlier post, I really really can't see the problem here! I know mrs mummy was upset by his change of plans, but I really can't understand why. Am I being really thick about this? If it was Christmas day, or any other special occasion, I could understand the emotions involved, but in this case (assuming it was a casual visit) I really can't.

 

Perhaps it's a major fault in me, but I'd be really irritated at my every motive and intention being examined over the choices I make.

 

Flo'

[mummy]

Wow I have just spent several minutes reading all your answers and am bowled over by the level of interest this has caused. I think some of you guys have made some valid points. maybe there could be some truth in the idea that only after he had thought about it for a while he REALLY couldn't go through with it so said the first thing that came into his head.

In answer to the person who questioned why I had made all the arrangements and not included him is because normally I don't include him in any social events because he hates them, especially at my dads because of the animals, so this is how we do things - I assume he's not coming unless he states otherwise. That's why I was so pleased when he suggested he comes too!

Also some of you said about having to explain WHY something isn't funny. Well that's exactly what i did. He apologised later but said 'I'm sorry I upset you but I don't understand why you were so upset?' I then had to explain about 'playing on peoples emotions' and also how it hurts when family is involved. He did try to understand and so did I, and actually he DID come with me and I ensured we sat in the garden where we could not smell the dogs or ciggy smoke and he could be distracted by the plants etc, and I agreed we wouldn't stay longer than an hour.

You guys have certainly given me a real insight into what it is like having an ASD! Even after 16 years of marriage (and an AS son) I am still learning and I think I always will be!

Thanks people, I am so glad you are here.

Mummy x

[Flora]

Hiya mummy

 

I'm really really pleased that you got it all sorted out

 

Flo' X

[Cat]

Two other considerations - how willing (and how genuinely) is the person to apologise when they have the unintended insult pointed out to them, and how often do these kinds of things happen? While it's absolutely true (while completely contradictory!) that people with AS should not be expected to respond with 'NT' understanding, nor be allowed a 'free pass' on the basis of that, the simple truth is that while the learning curve is longer/harder, rote learning should have made some impact on this area in an adult functioning at the kind of social level that includes relationships, children etc.

 

But surely it also depends on when the learning curve began for the person with AS. My middle son was 13 when he was diagnosed I know without doubt that the time we lost (ten years from first raising concerns) has impacted greatly on where he is today socially. The teen years are not the best years for any child and trying to show a child with AS where he has been getting it wrong for his entire life and why is not an easy task. It also depends on the level of functioning that the adult with AS has and this will change from situation to situation. Sometimes families expect more than outsiders and that adds pressure to the person and disables functioning. We all have bad days when we wade through treacle but I suspect that if you times that by ten that you might just come close to what the thickness of the treacle is like for an adult with AS. Maybe you really do have to live with an adult with this condition before fully understanding that age stands for very little and that for some adults their AS actually becomes harder to handle and even more disabling once they are an adult. So the truth as I see it is that you simply can not generalise like this.

 

Living with AS must be like living life on a bed of egg shells never knowing when one if going to break on you.

 

Cat

[Nic m]

hi mummy,

glad the day went well for you.

 

Cat, i do not know the answers to your questions, i only know that i try to teach my daughter right from wrong regardless of her AS. (i do spend my life trying to do things for her but also enable her).

I do not believe it is unreasonable if you say you will do something to a child, that if you cant do it you then explain why not.

 

I also do not believe explaining and discussing your own viewpoint, and expressing your hurt to your partner over their actions is trying to square a circle. this should surely enable a shared understanding .

 

nic

[pearl]

But surely it also depends on when the learning curve began for the person with AS

 

Thats a really good point Cat. JP being dx'd at 5, we have seen HUGE improvement over the years, both in his ability to figure out the "right" thing to say, and our interactions with him. Some of it would have happened anyway with simple maturity, but a lot of it is down to thrashing things out, debriefing etc, from us to him & him to us.

 

Mummy - sounds like it worked out well in the end

[Mumble]

Living with AS must be like living life on a bed of egg shells never knowing when one if going to break on you.

I often refer to myself (and constantly feel as if I am) as being in a constant state of alertness. I'm always aware of what might/could happen and what might/could happen as a result, planning what I will do if X happens and what will happen because of what I plan, whilst being still aware that Y could happen etc etc. It's exhausting and I'd rather not live like that but I don't make an active choice to live this way and I can't take it away - it's who I am.

[Bard]

I often refer to myself (and constantly feel as if I am) as being in a constant state of alertness. I'm always aware of what might/could happen and what might/could happen as a result, planning what I will do if X happens and what will happen because of what I plan, whilst being still aware that Y could happen etc etc. It's exhausting and I'd rather not live like that but I don't make an active choice to live this way and I can't take it away - it's who I am.

 

It must be a perpetually exhausting way to live.

I wonder if B will change as he gets older? He never seems to worry about possibilities, or what may happen, he lives in the moment, sometimes in the 5 minutes! So he tends to react to situations and events rather than anticipating them.

Maybe it's having a personal fixer that he trusts to always get the best deal available, he expects me to know everything, assimilate it, analyse it and then explain it to him...don't know.

[Mumble]

I do not believe it is unreasonable if you say you will do something to a child, that if you cant do it you then explain why not.

Hi Nic - I'm not sure if I'm misinterpreting what you're saying here so apologies if I am. Speaking from an adult point of view (would it be harder/different for a child - don't know) I sometimes get to such a state of anxiety about something that I can't give the real reason I can't do something (or even know what it is myself) and in such circumstances I may resort to providing the answer I think the questioner wants (and then they give solutions based on that which don't help because it wasn't the reason), use a stock phrase (such as the "I was joking one" mentioned here) or become non-verbal, uncommunicative and possibly well on my way to meltdown. I would love to know, let alone be able to explain, some of the difficulties I have with particular activities because it would help me help myself and help others help me appropriately - but I do think this is part of how autism manifests in me (and I accept it will be different in everyone) - and demanding an explanation from me a to why I can't do something when I don't know myself and am in a state of extreme anxiety is a surefire way to make things worse and lead towards inappropriate behaviours, if not meltdown.

[Mumble]

It must be a perpetually exhausting way to live.

I wonder if B will change as he gets older? He never seems to worry about possibilities, or what may happen, he lives in the moment, sometimes in the 5 minutes! So he tends to react to situations and events rather than anticipating them.

Maybe it's having a personal fixer that he trusts to always get the best deal available, he expects me to know everything, assimilate it, analyse it and then explain it to him...don't know.

It is exhausting - but to me that's normal if that makes sense.

 

I think there is a lot in what you say of having someone you trust to do the worrying for you - this is kind of what I got whilst I was in crisis which gave me the breathing space to think and get myself together again - without that I'm now back on the constant worry state. As a slight aside, I find the aspect of the dx triad dealing with social imagination really interesting and I think this is an example of how careful we do need to be in knowing what this really is referring to, because I can come up with some wild possibilities and worries about what might happen - very imaginative - and a lot of that is because of the AS.

 

(sorry, gone way way but I think this is a really interesting discussion, a bit like some of the debates we used to have on this forum )

[Nic m]

Oh, mumble , i am sorry if i upset you in any way, i love reading your explanations of things it really does help me understand my daughter.

 

I understand that it is difficult to explain something you don't understand yourself. I think if you learn some stock phrases that is a good thing and it is ok to say i have changed my mind or, actually i can't do it now.

I do think children deserve as honest an answer as you can give, it doesn't need to be detailed.

If you are too distressed a simple, sorry i've changed my mind is better than i was joking.

If i told my daughter i was doing something, then said i was joking she would rightly be upset with me.If i told her i was doing something then said actually i don't think that is going to be possible, because of x y or z then although she would be upset it would help her understand.

Does that make sense?

I do think if you commit to a relationship then that comes with it, a reasonable expectation to be as open as you can be, and that includes the one you have with your children.

 

have i explaine that ok?

 

sorry if i went on too much

 

nic x

[Cat]

Pearl our youngest was diagnosed at 3, he is already light years ahead of his brother socially who is now 21. The eldest of my two has a diagnosis of AS and was assessed as being very very high functioning, which is correct seeing as the assessment was given re his IQ. The youngest was said to be much further down the spectrum than his brother - again correct if you go on IQ. However functioning abilities has diddly squat to do with IQ in my opinion. I have seen first hand the difference that a young diagnosis can make. DS3 has a really good understanding of himself and is already learning what other people expect from him socially. I have been saying for years that it is impossible for someone to understand other people if they do not understand themselves and I stand by that. I am also an advocat for telling our kids sooner rather than later, although I also understand that this also has a great deal to do with the family and the child. Our youngest has grown up knowing that he is autistic and finding out about himself. Because of this he is now also quite good at working out other people. Only today he informed me that one of his mates has anger management issues Thing is he is correct. The child in question does have a terrible temper. DS3 told his mate today that only he can stop the outbursts because only he is in charge of his own brain. Not bad for an 11 year old.

 

I still think that it is quite sad that at 11 he also knows that NTs have very firm expectations of what they believe that he 'should' be capable of. But hopefully knowing this can only help him to continue with his own personal journey of discovery of himself.

 

Cat

Edited August 10, 2008 by Cat

[bid]

Reading what you have written, Mumble, the over-riding feeling I have had all my life is fear/anxiety, too <'>

 

Bid

[baddad]

But surely it also depends on when the learning curve began for the person with AS. My middle son was 13 when he was diagnosed I know without doubt that the time we lost (ten years from first raising concerns) has impacted greatly on where he is today socially. The teen years are not the best years for any child and trying to show a child with AS where he has been getting it wrong for his entire life and why is not an easy task. It also depends on the level of functioning that the adult with AS has and this will change from situation to situation. Sometimes families expect more than outsiders and that adds pressure to the person and disables functioning. We all have bad days when we wade through treacle but I suspect that if you times that by ten that you might just come close to what the thickness of the treacle is like for an adult with AS. Maybe you really do have to live with an adult with this condition before fully understanding that age stands for very little and that for some adults their AS actually becomes harder to handle and even more disabling once they are an adult. So the truth as I see it is that you simply can not generalise like this.

 

Living with AS must be like living life on a bed of egg shells never knowing when one if going to break on you.

 

Cat

 

Hi cat/all -

TBH I'm a little confused by what you've said about when the learning curve began... surely it begins at birth - not from the point of diagnosis? I don't understand why the first ten years were 'lost' opportunies for social understanding, purely because the dx wasn't there - surely you didn't not try to teach him social rules before that point?

Saying you really have to live with an adult with the condition before you can understand is, IMO, a bit of a 'trump card' - the kind of thing many parents say to professionals who can't lay claim to an autistic child themselves. The fact is that having an autistic child or adult close to a person doesn't necessarily make that person any better equipped to understand than someone who doesn't - it's all a question of individual responses. I have direct experience of autistic adults both as a care worker and within my own family, and can honestly say that sometimes the most problematic elements in those autistic adult's lives has been the input of those closest to them and the issues of them 'projecting' their own wants/needs/expectations/prejudices and assumptions onto them.

I totally agree that you can't generalise - but that's a two way street, and i also agree that it depends on the level of functioning of the adult, which is why I was very specific about the level of social understanding... While obviously circumstances can make a huge difference, the point I was making was that if the conceptual understanding is generally in place, then specific situations where it is not generally in place need to be considered in context - why are the skills not being utilised in certain situations and what factors contribute to that? Sometimes it can be as simple as 'because in situation a I can get away with it and in situation b I can't' - and that is as true for autistic people as it is for NT people. I'm not saying it's always that simple, but it is a perfectly normal, predictable model of human behaviour, so why not look at that before looking for some other (abnormal - for want of a better word) explanation?

 

[Bard]

Reading what you have written, Mumble, the over-riding feeling I have had all my life is fear/anxiety, too <'>

 

Bid

 

So, returning to one of Cat's points, would it have been easier or better for you or Mumble to have had a dx earlier, as a child?

If you had always known that your brain was wired differently, and that certain things were not your fault or you being deliberately difficult or odd as perceived by others, would that have enabled you to worry and stress less?

 

I find this sort of debate immensely useful because I can't know what it is like to have an ASD, only how it appears in others.

B seems very happy and content with the scaffolding approach that we have worked out between us, but I do wonder if and how he will change as he gets older, and whether he will become more insecure and uncertain, or if he will remain content.

 

I loved meeting pearl's JP, he was a glimpse into a possible B of 18...still with some input from family but an increasingly independent and confident young man, tackling all sorts of new experiences and challenges.

Edited August 10, 2008 by Bard

[Bard]

I understand what you're saying too Baddad, and I know that my failing in living with an adult whom I am certain is AS is that I've got enough on my plate most days and weeks. So often I don't bother with the negotiating and coaxing and dialogue.

I just let him be himself, a sin of omission on occasion.

 

But truly, a lot of the time I can't be bothered to effect a change in the oil tanker's direction, it takes too much, and it's complicated by the fact that he's an adult and therefore an equal.

So I couldn't get into my bl**dy kitchen again today for over 4 hours, because of the photography. And when I asked him how long he'd be, because I needed to cook dinner by 7pm, he said that he needed the space.

Yes, there was a heated monologue, but I couldn't make him move like B. In fact, B would have asked first, thereby enabling us both to negotiate.

[Mumble]

Oh, mumble , i am sorry if i upset you in any way, i love reading your explanations of things it really does help me understand my daughter.

Nic - you didn't upset me at all <'> and having re-read it a few times I think Maybe I misunderstood - I totally agree that in explaining to a child (and I suppose particularly an ASD child) why something isn't happening that you had previously said would happen needs to have a good reason rather than "as a joke" - totally and utterly agree with you there. I think I was generalising from the main point more as to why I find it difficult sometimes to explain why I can't do something - I'm not in a relationship nor an I close to my family in any way where that would be a consideration for me, and I think it is different there.

 

TBH I'm a little confused by what you've said about when the learning curve began... surely it begins at birth - not from the point of diagnosis? I don't understand why the first ten years were 'lost' opportunies for social understanding, purely because the dx wasn't there - surely you didn't not try to teach him social rules before that point?

I think you have the opportunity to learn more about yourself once you know who you truly are. Yes, before a label (of anything, not just ASDs) you may feel different, even know you are different, possibly find you own ways to cope with that difference. But without the answers as to why you are different or the confirmation that there is a difference there, you can't easily begin to move on and try to accept yourself and who you are. Yes you teach social understanding regardless of label but based on needs, but I do think you assume something very different about those needs and approach things differently without the understanding of why those perceived needs appear to be there - does that make sense? Yes I've always been autistic, but now I can really begin the process of dealing with that and reading about it and not feeling so ###### alone and different as I used to.

 

So, returning to one of Cat's points, would it have been easier or better for you or Mumble to have had a dx earlier, as a child?

If you had always known that your brain was wired differently, and that certain things were not your fault or you being deliberately difficult or odd as perceived by others, would that have enabled you to worry and stress less?

It's a question I often ask myself and to be honest I don't think we can ever know the answer. If we had today's developing understanding (all Aspies are brick wielding criminals aside) when I was growing up and I had the dx, things might have been very different, but if I'd had the dx as a child with understanding as it was there and the perceptions held by my family it is likely that I would have been institutionalised and would be leading a very different life today. But then, every decision, whether connected to ASDs or not can have such a dramatic effect on our lives - my sister and I were talking about this recently and projecting where I would be now had I gone to a different 6th form and been able to do the subjects I wanted - certainly somewhere very different from where I am now and I may have found an environment that fitted me so well my differences wouldn't have been recognised and I would still be without a dx. I'm waffling a bit tonight, but I think what I'm trying to say is, we just don't know - I would have loved not to have been as mis-understood through school and to be ridiculed by my teachers and peers but I don't know that if I had been dx'ed those would automatically follow. Likewise I would love not to be blaming myself for everything and have such low self-esteem as I have today, but I can't guarantee that I wouldn't have that had I been dx'ed because the way we are is a product of so much more than just the diagnosis.

[bid]

So, returning to one of Cat's points, would it have been easier or better for you or Mumble to have had a dx earlier, as a child?

If you had always known that your brain was wired differently, and that certain things were not your fault or you being deliberately difficult or odd as perceived by others, would that have enabled you to worry and stress less?

 

I think having a dx when I was younger within the current ASD-positive culture would have meant that I didn't spend 40 odd years thinking I was abnormal, dysfunctional and inadequte. But having a dx when I was young within the understanding of ASD as it was then would have been pretty disasterous for me I think.

 

As for the constant feelings of anxiety...I think that for me that is probably part and parcel of my autism, as a lot of it is to do with not being able to 'see' the future/possible outcomes, etc, etc (as Mumble explained, I think).

 

Bid

[Cat]

Hi cat/all -

TBH I'm a little confused by what you've said about when the learning curve began... surely it begins at birth - not from the point of diagnosis? I don't understand why the first ten years were 'lost' opportunies for social understanding, purely because the dx wasn't there - surely you didn't not try to teach him social rules before that point?

 

You can teach a dog to jump through a ring of fire but will the dog understand why it is doing it - apart from the fact that it will receive a treat at the end of its jump. I doubt that the dog will ever understand that it is being used primarily for entertainment. I do know that some dogs are used in very dangerous situations and war zones, but the dogs I am talking about are those who are taught to jump through rings of fire in the name of entertainment. So yes of course I taught my son social rules and he took them so literally that he was for a long time the perfect child - speak to when spoken to - seen and not heard. That in part was why I knew that there was a problem. But in the absence of any answers I went on regardless believing that he was picking up none verbal communication that can also provide the framework for social understanding. At the point of diagnosis I was told that it was his very high IQ that got in the way of a diagnosis. His IQ masked the fact that he was building up so much frustrations due to a lack of understanding which eventually led to a full scale breakdown. I have always been something of s stickler for social rules and I was probably as much to blame as anyone for his head exploding when he was 12. He was doing things he did not understand for reasons he did not understand and it eventually took its toll.

 

Saying you really have to live with an adult with the condition before you can understand is, IMO, a bit of a 'trump card' - the kind of thing many parents say to professionals who can't lay claim to an autistic child themselves.

 

I 'think' you mean that I am trying to use a trump card as a cop out. I do not agree. I could not envisage what living with an adult with autism was like until I found myself doing it. I have a great deal of respect for quite a few professionals who do not live with autism and have learnt a great deal from them. They in turn have told me that they have learnt a great deal from the parents who live with autism. I consider it to be a two way street.

 

I have direct experience of autistic adults both as a care worker and within my own family, and can honestly say that sometimes the most problematic elements in those autistic adult's lives has been the input of those closest to them and the issues of them 'projecting' their own wants/needs/expectations/prejudices and assumptions onto them.

 

I am sure that you are correct about 'some' parents just as there are 'some' professionals who project their own expectations of what an adult with autism should or should not be able to do and do not get it right either.

 

I totally agree that you can't generalise - but that's a two way street, and i also agree that it depends on the level of functioning of the adult, which is why I was very specific about the level of social understanding... While obviously circumstances can make a huge difference, the point I was making was that if the conceptual understanding is generally in place, then specific situations where it is not generally in place need to be considered in context - why are the skills not being utilised in certain situations and what factors contribute to that?

 

I have found that extreme stress and anxiety disable my high functioning adult and any skills that I have believed were well and truly in place have gone sailing out of the window. You can sit and discuss what is appropriate and what is not appropriate forever but that does not mean that when push comes to shove the appropriate option will be used. Socially my son knows full well what is expected of him and that in it’s self disables him socially. He finds it difficult to multi-task so thinking about what is and what is not an appropriate course of action or expression takes away from anything else that he might want to be doing. I find that very sad.

 

Sometimes it can be as simple as 'because in situation a I can get away with it and in situation b I can't' - and that is as true for autistic people as it is for NT people. I'm not saying it's always that simple, but it is a perfectly normal, predictable model of human behaviour, so why not look at that before looking for some other (abnormal - for want of a better word) explanation?

 

I look at it in that way because this is an ASD forum is it not? So we are here for the most part to discuss autism, how we live with it and how it impacts on our lives. When I read the original post, which now seems like light years ago, I could see reasons why someone with autism would act as the OPs hubby had. I can of course only go from my own experiences brought about from the two people on the spectrum who I live with, both of whom are so totally different while being very much the same. It is probably true that all people have the ability to push a situation in a way that they want but from my experience of my two sons, there is 'usually' something to do with their ASD that shows up in everything that they try to avoid doing. We have a rule in our house and that rule is that we are as truthful as we can possibly be with each other. If DS3 says to me 'I can't do shopping today' I ask him is that because he is not functioning well that day or is it because he just does not want to. If it is because he does not want to then he still has to go but he also knows that I respect his honesty. Being honest with each other has for a greater part of our lives taken away anything which could be considered as manipulating a situation for our own whims. If DS3 says that he really can't do shopping then I trust that he is being honest with me and we don't go. Of course this is just our way of living with autism but for the most part it works for us. While I believe that autism should never be used as an excuse for some wrong doing I also believe that sometimes it is an explanation.

 

Cat

Edited August 10, 2008 by Cat

[mummy]

I like the idea of total honesty but it doesn't work in this house. My AS son is 15 and he doesn't acknowledge his AS at all although he does admit on his Bebo page that people think he's 'weird' If we are going into a situation that I know he will struggle with he will normally just say he doesn't want to do it but doesn't seem to have the verbal abilty or the desire to tell me why, he just says 'because I don't' so I don't always know whether he is just being awkward or not. Sometimes my intuition will tell me it's because of his AS but if i ask him a question like 'are you worried about so and so because if you are I may be able to help' he'll just say 'no I'm not' which isn't very helpful at all.

Mummy

[Nic m]

Mumble,

 

we think the same on this, don't know how to do smiley faces but that is what i am thinking.

 

baddad you have a very good way of explaining things.

 

N x

[Mumble]

don't know how to do smiley faces but that is what i am thinking.

A colon : followed by a closed round bracket ) without a space between the two, so it looks like a smile on its side - like this, but without the space : )

 

For a sad face you need a colon followed by an open round bracket, again with no spaces : (