What a Waste of <Rude Word> Time!!!!

[TheNeil]

I can now honestly say that I understand (to a certain degree) what most of you lot go through when you get frustrated at the lack of help and assistance for ASDs. Having lived most of my life blissfully unaware of being AS it's not something that I've ever had to really get involved with, but now...AARRGGHH.

 

I have just returned from seeing the world's most inept psyhcologist. Actually I have just returned from my third of three sessions and this will be my last visit...or so I was informed. Apparently I'd been told this at the first session but must have 'forgot'. Err I don't think I did - I don't forget little details like that. Anyway as this was our final session he wanted to have a review of the progress we'd made...err, what progress was that exactly?

 

Not only did I then get told that I was much better (what?) and I was obviously coping much better (yes, that's why I'm now on ADs and signed off work for two weeks) but that I'd done really well to join the running club (WHAT?!?!?!?! I joined the running club 5 months ago...idiot). I blew at this point and pointed out that I was not happy with his initial statement (made before Christmas) about if AS exists and that I'd been properly dx'd back in April by someone who knew what they were talking about (I didn't actually use these words but you get the idea). He then wriggled, gave a wishy washy non-commital answer (as always - you know that I don't like ambiguity)and tried to explain that there was no fixed list of criteria for AS and that, like any 'syndrome', it was very difficult to give a straight yes or no (which is <insert rude word here>). "Other syndromes like...erm..." I kid you not, the pair of them could not think of another syndrome akin to AS (the dippy trainee did suggest 'Downs Syndrome' - err, not quite dear)(please note how the trainee has gone from being 'pretty' to 'dippy' - what a difference a couple of weeks makes). Thankfully the one person in the room with no psychology qualifications whatsoever suggested Tourette's.

 

We discussed the relaxation CD and I explained that it hadn't worked as my mind kept filling up with ideas instead of emptying. This, apparently, is a common problem. So too is not knowing that there are two sets of relaxation exercises on the CD...a fact that Dr Brain-dead was unaware of (this is the same doctor who suggested listening to the CD whilst driving - despite the fact that the CD explicitly says not to). In other words, the <insert VERY rude word here> hadn't even listened to hi sown relaxation CD. So I asked if we could try something else which was answered with "Well it's not a checklist - we don't just say 'try this, didn't work', 'try this...'". I also misundertsood the instructions I was given last time about small talk.

 

I'd been told to come up with a set of stock responses to common questions/statements (well d'uh I never thought of doing that in the past three decades). So I'd done this, tried to stick to them but had been thrown in Sainsbury's by the banality of the checkout assistant. I explained this to Dr Idiot and he asked what I would consider to be a 'successful' result. I replied that not being stabbed or having the other person pull a face. "And did this happen?". Well, no. "So it was a success then". Well technically yes but I still got anxious and confused. "Yes but the conversation was a success". It seems that to 'fit in' I have to make sure that everyone else is comfortable and that I don't display the fact that I'm upset even if I am - I have to stop worrying about things (LIKE I NEVER THOUGHT OF THAT BEFORE?!?!?!?!?!?!? IDIOT ). Is it any wonder I'm losing my marbles.

 

The upshot is, I spent 3 hours of my life sat in a room being interogated by a man with no more interest/understanding than a concrete post, got <insert VERY rude word here> all help or support and am now more <insert rude word here>ed off than ever. USELESS <insert rude word here>S!!!!

 

I didn't go looking for a cure. I didn't go looking for a magic wand to make everything better. I didn't even go expecting much of anything really. The fact that I'm now more angry and frustrated than ever before though kind of makes the part about doctors 'not making things worse' seem a little bit difficult to appreciate. AAAAAAAAAAARRRRRRRRRGGGGGGGGGHHHHHHHHHHHHHH

 

So, just to clarify, it didn't go well.

[Rachelp2]

Hi,

 

Well that really is frustrating..... so what's supposed to happen now? Have you already seen a psychiatrist before this psychologist? (sorry to ask I am not up todate with your posts)

 

I spent years being sent here, there and everywhere and finally I got a diagnosis (adult ADD) but ended up paying lots of money as I had had enough and went private. The NHS were so unhelpful & all they did was made me ill with all the stress, frustration and wasted energy! (My website tells the story if you want to neb!)

 

I'm sorry I can only sympathise with you, have you got any appointments coming up with anyone else?

 

Kind Regards, Best Wishes,

Rach

[Bagpuss]

TN

 

Unbelievable Don't even know where to begin there was so much that shocked me in your post.....what an utter disgrace

 

DH and I are thinking of you and if you ever fancy a chat or get together PM me x

[TheNeil]

Hi,

 

Well that really is frustrating..... so what's supposed to happen now? Have you already seen a psychiatrist before this psychologist? (sorry to ask I am not up todate with your posts)

 

I spent years being sent here, there and everywhere and finally I got a diagnosis (adult ADD) but ended up paying lots of money as I had had enough and went private. The NHS were so unhelpful & all they did was made me ill with all the stress, frustration and wasted energy! (My website tells the story if you want to neb!)

 

I'm sorry I can only sympathise with you, have you got any appointments coming up with anyone else?

 

Kind Regards, Best Wishes,

Rach

 

Hi Rach,

 

What's annoying me is that I went down the NHS route, got nowhere. So I went down the private route, got my dx (officially AS) and the NHS caught up 8 months later, told me nothing (they were unaware of my dx) and have now really hacked me off again.

 

It's not I don't know what I am or how my head works, it's that they just seem to offer nothing in the way of support. Actually they offer nothing in the way of understanding what the hell they're dealing with. I know that I get stressed and anxious so what I was hoping for was some help dealing with these problems and some ideas on how to cope with things. Being told to stop worrying and getting anxious is not exactly the kind of advice I was looking for (does these people think that I sit around all day staring at the wall? Do they think I've been patiently waiting 32 years for soemone to come along and tell me these things? IDIOTS). I know that there are people a lot worse off than me but is it too much to ask for a little bit of advice from the 'experts' (term used VERY reservedly)? I like to think that I try really hard but where does it get me.

 

How is it possible for such inept people to be put in positions where a) they earn more money than me, and they are able to really screw people's lives up with their uselessness (I know I can be a bit 'flaky' at times but God help anyone who's not as stubborn and self-reliant as I am). I despair, I really do.

 

AAARRRRGGGGHHHHHHHH...and breathe...

 

I think the guy just either didn't know what the hell he was doing or just took a personal dislike to me. He didn't engage me on my level, he lectured me instead of talking to me and speaking in the way that I speak (making light of stuff). Basically he just didn't listen to what I was saying and just went down his checklist of things to do, ignoring the fact that it wasn't working (how can NT techniques work with an ND brain?). To be honest I don't know whether he was just scared by the fact that I wasn't ranting, was rational, and was realistic in what I wanted to achieve. I dunno, maybe he was just scared that I knew more than he did.

 

I'm still debating my next move (although setting fire to the hospital has now been relegated to the 'last ditch options' list).

[TheNeil]

TN

 

Unbelievable Don't even know where to begin there was so much that shocked me in your post.....what an utter disgrace

 

DH and I are thinking of you and if you ever fancy a chat or get together PM me x

 

BP you've met me and I'm not an unreasonable person am I? Was I expecting too much from all this?

 

What with no job news (yes, still) this has really been a kick in the stomach.

[something vague]

Hi Neil,

 

As you have already said, the guy doesn't know what he's talking about. You mentioned before that he even said something like if AS really exists............ If he's thinking like that then he really doesnt understand and those stupid relaxation techniques dont work on NTs either!! You'd be better off stroking a guinea pig

 

Actually come to think of it maybe the guy has one of these hopping about in his head

 

I think it is a matter of ticking off stuff on his check list.

 

When we met you, you were amazingly calm looking and 'in control' or so it appeared. You are very good at masking your AS. This guy wasn't willing to look past that mask. I dont know what you can do about that, dont know if you can ask to see anyone else.

 

Ohh I'm still keeping my fingers crossed for you on the jobs front!

 

Take care,

 

SV

[Frangipani]

Hi The Neil

 

<'>

 

Can I make a suggestion. Give yourself a break from all this analysis, deep down you know you have AS getting it down on paper is just going to frustrate the hell out of you.

 

Especially seeing a Psychologist that said he doesnt recognise AS I would have said hello and goodbye in the next instance.

 

Dealing with the right people is a must. Go back to your GP and tell him your frustrations and that you want a referral to a Specialist that actually knows about AS.

 

As I mentioned earlier, give yourself a break. Try and put this in the background for the moment because I think your priority at the moment is finding a job you like. Can you go and get assistance from government dept for people with 'disabilities' I hate that word, but, their assistance to place you in a job that is ASD friendly.

 

In our church for instance their is a couple, that they gave recognition and a prayer of thanks for the wonderful work they have been doing helping people with disabilities get a fair go in life and work placement.

 

Perhaps you could do some searches on google. like 'work placement' for disabilites etc. again ask your GP.

 

Just wondering

 

Frangipani

[Bagpuss]

BP you've met me and I'm not an unreasonable person am I? Was I expecting too much from all this?

 

What with no job news (yes, still) this has really been a kick in the stomach.

 

 

I don't think you were expecting too much TN.....an understanding of AS would of been a start. How the heck do they make a comparison to that and Downs Syndrome?

 

As for relaxation tapes...I tried one once, with waterfalls and waves......made me want to wee constantly and I couldn't relax at all I find watching a good film in my PJ's munching Revels works better

 

Sorry to hear that there is still no news on the job front I was so hoping you'd of heard by now....fingers crossed for you.

[TheNeil]

As you have already said, the guy doesn't know what he's talking about. You mentioned before that he even said something like if AS really exists............ If he's thinking like that then he really doesnt understand and those stupid relaxation techniques dont work on NTs either!! You'd be better off stroking a guinea pig

 

He did, on two separate occasions, say 'If Asperger Syndrome exists...' and then tried to explain this away by saying that as it was a 'rubbish bin' term (his phrase not mine - I prefer the far less offensive 'umbrella') it was impossible to come up with a concrete definition (granted) so therefore he felt that the use of 'if' was justified. Why is the word 'idiot' bouncing bout my head at warp 8?

 

When we met you, you were amazingly calm looking and 'in control' or so it appeared. You are very good at masking your AS. This guy wasn't willing to look past that mask. I dont know what you can do about that, dont know if you can ask to see anyone else.

 

I've had 30 years of practice at being 'normal' so it's second nature to appear in control. The problem is that to look like that I have to suppress everything, tolerate <insert rude word here>s like him and just bottle everything up. This takes its toll after a while and this is what I really wanted the help with - I know how to appear 'normal'...it's dealing with the things that I have to hide that eat me up inside. The NE meet-up was fun and I will do it again but it took a lot out of me (regardless of how calm I might have appeared).

[bikergal]

Sorry it didn't go so well... <'> <'> <'>

 

I'm feeling rather pessimistic about various 'services' myself at the moment so can't really offer any advice, except repeating what frangipani said and ask your gp for a consultant experienced in AS. I saw 'the mask' in my daughter this morning, it tears me apart seeing her like this, does it really have to be a fact of life for kids (and adults) like her...to receive constant verbal abuse and bulllying...she had silent tears rolling down her face before she got on the bus. That's another thing she can't cope with...and that's yet another story that's a no hoper...she's never going to get transport even if they agree to statement her...

 

Take care TN

 

Hope you hear something on the jobs front

[badonkadonk]

Sorry to hear about the appointment and the job.

 

Emily

xxx

Edited January 30, 2007 by badonkadonk

[TheNeil]

I HAVE JOB NEWS!!!!!!

 

I didn't get it. The firm went for a more junior and cheaper option.

[Bagpuss]

Have PM'd you TN

[something vague]

That's such a shame TN

 

I hope that you find a better job soon <'>

 

SV

[aro]

TN sorry things haven't worked out in the job line, really hope another, more enticing, job comes your way soon.

 

As for the <insert rude word> you saw on the NHS I think it might be work asking for a new referral to someone who actually wants to help people Can you contact the ascossiation of psychologists to see if there is an ASD specialist (NHS) in your area?

 

Anna x

[oxgirl]

Oh, bad luck about the job TN. Better luck next time. Keep on trying. <'>

 

~ Mel ~

[brooke]

Hi TN

Just seen this post. I dont know what to say life can be so **** sometimes. And as for Drs, pyhchs etc some of them i really think just dont have a clue. I really hope you can feel a bit better soon.

Brooke

[Lucas]

He's right and wrong.

 

Asperger's Syndrome does not exist...because it IS Autism. There has never been a sufficient dividing line that would allow a trained person to look into a room of adults and pick out which ones have an AS diagnosis and which have an Autism diagnosis.

 

But the guy is only right because of a factual technicality that he is almost certainly not aware of and possibly is in no way qualified to deal with anything Autism-related.

 

I'm currently doing PROSPECTS: Step-into-Work course run by the NAS in Leeds on thursdays and when I was last there, the unit was on communication. Throughout the course I pointed out that Communication skills and Social skills were not the same thing and gave as clear explaination as I could which got me nods of approval from tutor and fellow course-mates.

 

Social skills are Local, fluctuating and restrictive: what works for one group of people will not work for another and Autistics generally fail in this area because we're much better at Communication skills.

 

Examples: *Stock responses* to common questions and conversational cliches. A French person with no experience of Japan will have initially poor Social skills by the standards of a Japanese person. Langauges Customs(except where covered by Communication skills) and locally-available information.

 

Communication skills are Global, universal, they're static and do not change, they can *not* be taught, they are developed through experience and inherent learning which is the natural way Autistics learn.

 

Examples(interestingly, whilst Social skills are behaviour-oreintated, Communication skills are cognition-oreintated): overt observation, overt non-observation(you cover your eyes or look away) and reacting to how others are reacting. Consideration, respect, violence(not all communication is positive, welcome or acceptable), trust, etc. You get the picture. Autistics tend towards being very good at those kinds of things at expense to Social skills.

 

So I strongly disagree with the quack when he suggests stock responses as a means of improving communication. One thing Autistics often communicate when asked a stock question is "do not ask me a stock question" in some form or another(hesitation, silence, mumbling, etc) because we can't possible give a natural honest answer if it has to be a stock answer where we have no idea what to reply with.

[TheNeil]

So I strongly disagree with the quack when he suggests stock responses as a means of improving communication. One thing Autistics often communicate when asked a stock question is "do not ask me a stock question" in some form or another(hesitation, silence, mumbling, etc) because we can't possible give a natural honest answer if it has to be a stock answer where we have no idea what to reply with.

 

What you have to remember is that he's not in this to help me out. He's in this to get me 'cured' ('cured' from a condition that can't be 'cured' and, according to his small-minded inflexible view of the subject, doesn't even exist anyway) so that I'm no longer on the NHS waiting lists. I agree 100% that 'stock answers' don't improve communication - if anything they actually make it worse as you don't learn how to express yourself and, instead, hide your true self even more. In short, it's living a lie.

 

As soon as he started talking about 'stock answers' then I knew that this was nothing to do with making me feel any more comfortable but just to make me more 'acceptable' and to make everyone else feel more comfortable. What really irks me is that I've been doing 'stock responses' for the past 30 odd years as a way of simply not drawing attention to myself but it's the fact that have to hide what I really think and feel that causes me problems - it was this I wanted help with but, as I'm just a name on a piece of paper to him, he couldn't be bothered to take the time/effort to get past the 'presentable face' and see and understand the person inside. God forbid he should actually try to help someone.

 

My own opinion on this is that many NT's simply can't handle honest opinions and truths. If someone asks 'How are you?' then they either want to know (and therefore you should be able to give an honest and full answer) or they don't (in which, why ask in the first place). Instead we have to go through this charade whereby we go through a set 'script' of lines and phrases that mean absolutely nothing. If someone asks my opinion on somethign then I'll give it (bluntly and tactlessly as ever) but, if they didn't want the truth, why bother asking in the first place? Why not just say 'say that my hair looks good' (or whatever)?

[something vague]

Quote from Lucas

 

Communication skills are Global, universal, they're static and do not change, they can *not* be taught, they are developed through experience and inherent learning which is the natural way Autistics learn.

 

Examples(interestingly, whilst Social skills are behaviour-oreintated, Communication skills are cognition-oreintated): overt observation, overt non-observation(you cover your eyes or look away) and reacting to how others are reacting. Consideration, respect, violence(not all communication is positive, welcome or acceptable), trust, etc. You get the picture. Autistics tend towards being very good at those kinds of things at expense to Social skills.

 

Lucas, I really like the way that you have explained that. Through meeting Neil recently and PMs, I've really started thinking about this again. How difficult it must be to have to use your intelligence to tell you what is ok and what isn't in social situations instead of instinctively knowing. We NTs seem to learn a few social rules which we can transfer from situation to situation. The rules stay with us and though we all make the occasional blunder, we quickly learn and assimulate our learning to new situations.

 

One of the boys that I work with commented on another pupils fat tummy and then in the next breath said that another boy looked like an 'old woman'. He wasnt trying to upset anyone and when I pointed out that what he said could have caused the boys to be upset, he was very anxious and very sorry. I wonder how I can help this boy to understand that sometimes observations like that are best kept in his head WITHOUT making him feel that he has done a really horrible thing. Any ideas? In fact how can I help him to understand this if he doesnt realise that he has said anything hurtful until another person reacts. It seems that he is always going to have to police his own thoughts and make evaluations of them every time he wants to say anything!! Not fair!

 

SV

[TheNeil]

One of the boys that I work with commented on another pupils fat tummy and then in the next breath said that another boy looked like an 'old woman'. He wasnt trying to upset anyone and when I pointed out that what he said could have caused the boys to be upset, he was very anxious and very sorry. I wonder how I can help this boy to understand that sometimes observations like that are best kept in his head WITHOUT making him feel that he has done a really horrible thing. Any ideas? In fact how can I help him to understand this if he doesnt realise that he has said anything hurtful until another person reacts. It seems that he is always going to have to police his own thoughts and make evaluations of them every time he wants to say anything!! Not fair!

 

Wish I knew the answer to this SV but, in the adult NT world I've now become aware that it becomes even more difficult as people don't even react or make it obvious that you've said/done something offensive (albeit inadvertantly). Instead they tut and then just tell everyone else that you're a nasty piece of work - the one person that they should be talking to about it is the one person that they invariably don't talk to about it.

 

To a certain degree, having been tripped up along the way and had his 'mistakes' pointed out and explained, he might learn what is/isn't 'acceptable' but it's never automatic. Even now I monitor what's being said as best I can (and it's a pretty fast process after years of practice) but a lot of the time it's simply a case of 'if you're not sure...don't say anything at all (or make a non-commital response such as 'fine')' and that is not a good situation to be in as, and I speak from personal experience, you end up saying less and less and have less opportunity to discover the 'boundaries' of offensive/inoffensive (as well as being unable to speak your mind an dtherefore have to bottle things up). When stressed or not concentrating properly the cognitive 'filter' that sits between the brain and the mouth is all too easily bypassed and out pops something 'wrong'.

 

What's annoying is that he's not doing this maliciously and is just saying precisely what he thinks, feels and observes (but you know this already). The truth is, most people (NTs) just can't handle the truth and instead prefer to live in a sugar-coated world where everything is, basically, bland and inoffensive. Sadly if you don't follow these unwritten conventions (either by choice or design) then you're deemed 'unacceptable' when, in reality, you're just being honest. So we're back to another hypocritical situation where society supposedly values honesty but actually demands that we lie all the time. Is it any wonder we go mad?

[something vague]

Hi Neil,

 

The boy in question is a young teen and very outgoing, theatrical - loves to perform in school plays etc and very good at it! I would hate to think that this confidence could be knocked out of him when he reaches adulthood and leaves the protected environment of special school (with some ASD awareness by some staff!!) I want to see him grow up as a secure young man with AS because to be quite honest he is absolutely ###### fantastic ...... very entertaining with a sense of humour not unlike yours He has a lot to contribute and it would be a shame if he began thinking ' If in doubt say nought'

 

SV

[Lucas]

I definately need to pick up on this as there are horrible drawbacks to teaching Autistic people certain things such as when they are supposed to not speak their thoughts.

 

One of the few things we learn directly from non-Autistics is specifically NOT to say what we're thinking and to instead rely on the stock responses that actually cause others to think of us as boring people(my advise to any teenage Aspie would be to forget everything a non-Autistic told them about talking to the opposite sex; the excess of stock responses will turn them right off).

 

But I think that a lot of the difficulty I had learning to interact with others stemmed largely from the way they interacted with each other, making it impossible for me to learn because it's always entirely been in 'their own langauge' which is untranslatable into how I learn communication.

 

NTs appear to use communication laden with shortcuts, but which only work in their little different groups. Autistics on the internet have their own of course, but it's rather straightforward and it's easy to work out that 'Neurotypical' means 'non-Autistic'.

 

It's actually kind of ironic that students are graduating from universities in record numbers yet employers are saying they lack basic skills such as communication(which have been replaced by social skills narrowly-defined by their own social circles. They have not learnt any non-social communication the way Autistics tend to).

[something vague]

I definately need to pick up on this as there are horrible drawbacks to teaching Autistic people certain things such as when they are supposed to not speak their thoughts.

 

Hi Lucus,

 

I dont want to be in a situation where I'm telling someone not to speak their thoughts. I'm really trying to find a compromise. If the young man in question continues to say people are 'fat' ,'look funny' have 'bad breath' he is likely to get hurt by someone who takes offense! Also he will lose friends. Also as Neil says, when he is older people might not tell him he's upsetting them but rather they may talk about him behind his back and exclude him from their social group.

 

I want to know what I can do to help him to grow with his confidence intact whilst also helping him to understand that certain personal observations make the majority of people unhappy. I really wish that i could change society so that people could recognise when an autistic person just making an observation with no malicious intent.

 

How do you manage? Do you speak all of your thoughts? If so do you find that sometimes you inadvertantly upset someone? Has anyone challenged anything that you have said to them? Do you feel like TheNeil..............that you find that you say less and less? Sorry a lot of questions. I would really like to know how I can help the young people that I work with.

 

SV

[TheNeil]

I would just like to point out that I do not advocate 'If in doubt, say nowt'. This is how I've ended up (by whatever route) and it's not a situation/state that I'd ever want anyone else to have to go through if they can avoid it. For me though it's now second nature and I don't know if I'll ever be able to 'unlearn' it. It is horrible knowing that you want to say things and want to express opinions but there's this brick wall that's mentally been put in between 'you' and the outside world.

 

You're spot on SV in not wanting to tell this lad to not say what he thinks (even if society in general can't handle it because of their particular hang-ups). It's difficult coming up with a way to explain this to him but not dent his confidence - wish I had some ideas on this one.

[Lucas]

I don't manage really, the only way I can avoid displeasing the majority of people is to avoid most contact entirely and I only have one friend who I go drink beer and watch DVDs with regulary.

[something vague]

Hi Lucas,

 

I am saddened that you feel that you have to avoid contact with people.

 

I wish that I could change society so that autistic adults didnt feel this way. Unfortunately i can't.

 

All that i can do is try my best to help to educate the young autistic people that i work with on how best to understand social interaction/social communication. To do this sometimes I need to tell them when they have said or done something which may upset someone else. What i want to know is how can i do this without making them feel that they have done something wrong.

 

I am really having difficulty putting into word what I'm meaning to say. I think i'll try later

 

SV

[badonkadonk]

Lucas and TN, I can understand the points you have raised here and, being Aspergers myself, to a certain extent sympathise and agree. But I think you've totally taken SV's question out of context.

 

I've been there and done it myself, when I was younger my mum was forever on diets. I was quite mystified as to what this diet place was because my mum was always 'going on' (a) diet. Every Tuesday evening she would dissappear and I would be distraught because I wanted to go on a diet as well and no one would tell me why I couldn't go or where it was that mum went. Eventually my mum found enough patience to explain diets to me but could only get so far as 'people diet because they're fat' before I dissolved into nothing but 'but why?' questions, at which point it is useless to continue talking to me because I'm just a ball of confusion. Anyway, information in hand I went with my mum to the supermarket and everything was ok, until we turned a corner and came across a lady who was quite a bit overweight. Me being me and wanting to show mum I understood diets now, I shouted to my mum "that lady needs to go on a diet doesn't she mummy".

 

Now I was just being honest and wasn't being malicious in any way shape or form. But it was still the wrong thing for me to say. Just because it's honest and the truth doesn't mean it should be said, especially when it hurts other people's feelings. This is what Autistic children could be taught but what will probably eventually be learnt through trial and error and that's just part of life because it's not just Autistic children that will learn these lessons (though I agree that this type of trial and error will be more frequent and harder to grasp for ASD kids).

 

When I did my teaching practice I was teaching a year 7 class A Midsummer's Night Dream. In the play there are two female characters which can easily be remembered as to who is who by remembering one is short and dark haired the other is tall and fair haired. Well I thought my kids had this down until I tried to get them to remember which one Helena was. I said, come on you lot you know the drill Helena is fair haired and what? Cue blank looks all around. I said well Helena is like me (and put my hand low down and drew it up high to show height) but the first thing one boy shouted out was 'fat miss, is Helena fat?' I mean it's true I am fat, but I meant height and as the boy was shouting fat the others were getting that I meant height. I didn't tell him off, he was telling the truth, but the other kids let him have it for saying the wrong thing and hurting Miss' feelings. He wasn't Autistic he was just insensitive and too immature to realise that whilst true, not the best thing to say. He apologised after class and I told him not to worry, we've all done it and that he technically did nothing wrong. I just reinforced that sometimes pointing out others weaknesses and pitfalls, again while true, can actually be quite hurtful but more embarrassing.

 

I don't see what is wrong with this, it's far from being hypocritical. Yeah we encourage people to tell the truth and so we should but there is a limit to everything and exceptions to make. In many cases it is never as simple as one thing or another and I agree that this is where those who are ASD can struggle because we do think in black and white. But that isn't to say that this type of thinking cannot be modified or lessons learnt. I have learnt that saying certain things can cause offense and while I might think them it is not always ok to say them because you have to take other people's feelings into account. I don't see how it's such a bad thing not to say it in order to spare someone else feeling hurt, even if we don't actually care how that other person feels. It is common courtesy and telling the truth for the sake of telling the truth does not have to be a way of life. Nor should it, in my opinion.

 

There are many, many cases where truth prevails and should be valued above all else. I agree that calling George Bush an idiot and incompetent amongst other things is totally correct and ok to do. His actions and thought for others are so bad that vocal criticism is expected and it doesn't matter if his feelings are hurt so much because he hasn't thought about other people. The same can be said if someone is horrid to you. It's not ideal to name call back because it's stooping to their level but it is justifiable for sure. But when a kid is sat there minding their own business and someone who is ASD comments how this other child stinks or is well ugly then this is not ok. Never will be. And it is ok to teach ASD children that this is unacceptable and that in circumstances like this it is better to just think these thoughts rather than say them outloud. Not punish them or tell them they are bad or anything like that. But guidance that sometimes it is inappropriate and that in certain situations people's feelings should be valued more than honesty.

 

It's a hard lesson to learn and get right for any kid, so those who are ASD will find it more difficult and will probably have to learn longer. But given the right feedback when they do make mistakes and not punishing them is the first step towards a positive experience. You don't need to jump at me and tell me that this hardly ever happens and that most kids are punished for being honest and so a lot of ASD kids become withdrawn ASD adults. I know this, it's happened to me, it still happens to me. I make mistakes I learn from them and sometimes I get attacked for my mistakes instead of better informed but it's a part of life I cannot control and, in my own experiences, I don't make it any better for myself by totally withdrawing from society. That's just my experience and I'm not saying it is better or worse than anyone elses, everyone is different and in my case I would prefer to keep making mistakes rather than cut myself off from people.

 

I think you both missed the point of SV's question and instead of seeing the ask for help as someone actually willing to take a positive step towards making ASD kids aware of inappropriate comments (whilst not punishing them), chose to relate how difficult and unfair this aspect of life is. If it were me asking the question if anything now I would be more anxious of how to deal with the situation for fear of getting it wrong and the child having an negative experience, like the ones you two related. You giving your experiences is totally fine and informative to NON-ASD people but I think you both missed the opportunity to help SV when they are actually a rareity in trying to help ASD children better integrate with other kids.

 

My advice, SV (while in no way claiming to be the best advice or right advice) is to try and relate what you're saying to the kid who is ASD rather than asking him to understand how it makes someone else feel because sympathy and empathy to other people is definately something we struggle with. Try first asking him how he would feel if someone said something negative about him, within earshot (don't use an actual weakness of his as it could give him a complex or something...I know you probably wouldn't do that but it's worth making sure ). So make one up and see how he responds. If he's finding it difficult to understand how he himself would be feeling try to explain how pointing out other people's weaknesses in this kinda situation can cause us to feel. How sometimes when people point out something you're not good at can make us feel sad and anxious because we cannot be better at these things (at this time). In terms of appearance and all that, it's tricky of course, but try to explain how calling someone ugly can have the same affect and explain how self-esteem works if you can. Liken it to how people feel when they are bullied and (if possible) relate it to his own experiences. It's making the connection that whilst it is the truth, is it actually worth saying it out loud just because it is the truth when it is so hurtful to the other person. Especially if it is a weakness or flaw that they can't exactly get better at or put right. Just as it is unfair to pick on someone because they are ASD, so too it is unfair to point out someone is ugly as they cannot help the way the look (apart from cosmetically). It is really hard and I wish you so much luck and lots of support. It will mostly be learnt through trial and error because we find it so hard to understand but it shouldn't stop you from trying to aid his understanding. Doing so in a positive way will only help him be less afraid of making mistakes or getting it wrong in future. If all else fails you could get some of his 'victim's of honesty involved so that they can tell him how it makes them feel. Doing it in a constructive way such as this where everyone views it as a learning process rather than jumping on the negative knock-on effect that honesty in these situations can have, can only be a good thing in my opinion.

 

TN and Lucas please don't see this as me having a go at you or telling you you're wrong. I've not done that in this post and it isn't my intention. Instead I've just tried to show 'the other side of the coin' as it were, and that while relating your experiences' is helpful, it is actually not helping SV answer their question which we should be trying wholeheartedly to answer in a positive way because they are trying to do something positive for both ASD and Non-ASD kids and trying to ensure that everyone's feelings don't get hurt.

 

Emily

xxx

[something vague]

Wow Emily,

 

Thanks for the reply

 

I have absolutely no problem with what Neil Or Lucas had to say. I want to hear their experiences and advice if they can give some. I have read many of Lucas's posts to knew that he would be opposed to the view that autistic people should be required to conform to the NT rules. Thats not a problem to me. As I said before i wish that I could change society but i can't.

 

It is good to have 3 autistic people giving me their individual views on how they tackle the difficulties of understanding social communication, how they attempt to overcome these difficulties. What I deduct from your responses is that you are individuals with different personalities which need to be taken into account as well as the ASD. Soo its no good coming up with stock responses!!

 

i have tried the 'How would you feel' approach (in the nicest possible way) The reply is usually 'I dont know'. Without actually pointing out a particular real weakness in a particular individual I find that the young people are not at a level of maturity to understand how to put themselves in another person's position........which of course is the catch 22..........if they could we wouldnt need the conversation!

 

I think what i'm most concerned about is that the autistic person might feel the impact of 'I've done something wrong!' so intensly that any other message is lost in the anxiety that ensues .

 

Hmmm I've tried to write much more but none of it is coming out right at the moment. i really admire your ability to communicate Emily!! Wish i was so good!!

 

Hey Neil, I'm really sorry I didnt mean to hi jack you thread.

 

If i work out what i really want to say maybe I'll start a new thread.

 

SV

[badonkadonk]

Thanks SV,

 

But honestly to congratulate me on my communication skills at the minute doesn't seem right when I've just put my foot in it all over again. (But thanks for the compliment all the same!)

 

Inevitably where I struggle is making my opinion not sound like an attack. I dunno how it comes out like it, especially in the written form, because I spend such a long time re-reading and re-checking to make sure I'm not offending someone. Honestly, TN and Lucas, I wasn't attacking you or your opinion but it's obviously come across that way or else SV you wouldn't feel the need to distance yourself from my post and reiterate that you have no problem with what was said. I have no problem with what was said, all I wanted to ensure is that you didn't feel like you couldn't do anything to help when I feel that you can. I didn't want you to be frightened into thinking you were going to just make things worse for him when inappropriate behaviour can be addressed and improved upon in a positive way. And it's so cool that you want to try....I dunno, now I can't seem to get across what I want to say but I wanted to try again cos I really hate offending people. If you could see me saying what I write I think it would be a different story because I'm really very shy and mumble all the time, I don't actually speak very loud. But re-reading my posts I can see how the language and style that I use could come across as this overly brash confident person who goes around telling everyone they're wrong. I've tried modifying how I write over the years but it just comes out, I just sit down and type.

 

I personally don't think that not saying a mean thing to someone, even though it's true, is necessarily conforming to NT rules. I just think it's common courtesy and polite not to. I'm not following some unwritten code when I don't tell someone they are ugly even though they are, I'm just not intentionally hurting someones feelings. So what they are ugly, so what I think that, does that mean I have to say it outloud? To me it is insane to think that, that is acceptable. Aspergers or not, Autistic or not I don't think anyone has the right to think that just because they think something and it's true they can say it. Not at the expense of other people's feelings if that person has done nothing wrong. I could walk down the street in the morning and point out all the flaws in people that I spot and that would be telling the truth but why should I be allowed to do that just because I think it? Why should I be allowed to make judgement on others and let everyone know my opinion just because in my eyes it happens to be true. I would be absolutely mortified if someone did that to me. I think we have enough people telling us that we are wrong and that we should want to be this, this and this in the world without us all turning to each other and pointing out each others flaws just because it's true and we think it. Is not saying things aloud really that bad? Is ignoring the bad points and focussing on people's positive qualities such a big deal? I'd like to think not.

 

Anyway, apologies if I've gone off offending people again in this post, it's not what I spend all this time sat here trying to do. I just try to help in my own weird way I just never seem to be able to do it properly

 

Emily

xxx

[something vague]

Emily,

 

You know this is getting crazy. I'm sitting here agonizing over what is 'appropraite' to write and what might offend anyone (which I might add included do i say 'people with ASD' , 'autistics' 'auties' 'aspies' or 'people with autism' . And thats before I have even tried to state an opinion or ask a question. And there you are worrying that you might have offended someone!! Maybe we are both too polite

 

I dont think you have offended anyone. i was just stating that I appreciated Neil and Lucas's responses and dont mind if people take me to task for anything i've said.

 

What i find with the young people that i work with who have autism and learning difficulties is that they often make observations just as part of their general conversation. Some observations could be upsetting to others but THEY dont realise it until its pointed out to them. I know that they often cant help saying these things, they are just observations, something that pops into their mind. I know that sometimes I must point out their mistakes but i worry that they may feel that they are being critisised for doing something that (at their level of maturity) is hard to control. I guess the most obvious solution is to provide lots of examples of such situations in fiction, tv dramas, cartoons....and the use of social stories.

 

OOPs Sorry Neil I'm still hi-jacking your thread

 

SV

Edited February 1, 2007 by something vague

[TheNeil]

I personally don't think that not saying a mean thing to someone, even though it's true, is necessarily conforming to NT rules. I just think it's common courtesy and polite not to.

 

Spot on and it's possibly because of this desire not to offend that Aspies can adopt the 'If in doubt, say nowt' approach as it's very difficult/impossible to realise what will/won't cause offence. If you get burnt enough then you soon learn not to stick your hand in the fire.

 

I just hope that SV can come up with a way to instill this 'will/won't offend' ability without knocking confidence. Sadly for old <insert rude word here>s like me it's probably too late (which means I can be as offensive as I want and get away with it...if I dared to open my gob of course ).

 

By the way Emily, I wasn't offended in the slightest - just a different point of view on the subject and that's never a bad thing.

[KarenT]

Hi Neil, only just come across this post - sorry, it's been a bit of a rough week.

 

Very disappointed for you that the 'help' you thought you'd be getting didn't materialise. Unfortunately that seems to be the way of the world these days, particularly in the circles we move in. Can't remember if I told you about the mum I know who called a multi-disciplinary meeting herself (with the support of her paed - obviously a parent wouldn't be allowed to do THAT on her own initiative!) and put them all on the spot by asking them all individually just exactly what they had done for her son so far and what exactly they could do for him/her in the future. They were flabbergasted and not one of them had an answer. The conclusion was that all these people gather round, playing this little game in which they pretend they're going to help, and we pretend that we believe them, and we all carry on this peculiar little dance where nothign ever happens in practice. It's a joke, and unfortunately not a rare one.

 

I guess Mrs Optimist here would say "What have you lost?" and (you might disagree here) I'd say not much, apart from the time you've invested. Youve gained a diagnosis, some awareness of why you are the way you are, and a blip like this won't really affect the person you are. It's annoying, yes, but having met you I'd guess that you'd soon be able to come to terms with it.

 

Sadly for old <insert rude word here>s like me it's probably too late (which means I can be as offensive as I want and get away with it...if I dared to open my gob of course ).

LOL Neil! I have visions of you at 80 - what a cantankerous old f*rt you'll be by then!!! It will certainly add spark to OAP Newcastle meet-ups!

 

Karen

x

[TheNeil]

LOL Neil! I have visions of you at 80 - what a cantankerous old f*rt you'll be by then!!! It will certainly add spark to OAP Newcastle meet-ups!

 

That's what I'm like now (except that I have my own teeth and don't need a stairlift to get upstairs)

[butterfingersbimbo]

i've got some matches if its any help?