asd child caring about what others think of him

[paranoid2]

My Dt2 was diagnosed a year ago with aspergers at aged 10. Although under a paed for many years due to attention and processing difficulties he was not a typical Asd case although I always saw traits.
He is a twin and shared twins friends in primary school, although he was popular. He is now at a different secondary school to dt1 and he is having a friend over this Friday, the first arrangement that he has done himself, ie invite, sharing phone numbers etc.
He is a bit anxious about it all, talking about what dt1 will do when friend is there etc . He has started to talk about being worried that he will bore friend. He hasn't the ability to banter in a free and easy way as nt kids do and has spoken about being worried that he will only have " minecraft" ( computer building game) to talk about and he says " I can't talk about funny things that happen to people at home like other boys" , ie the normal stories that nt kids share.

I have always thought his ability to think about how others perceive him, to be the opposite of what I would have thought would be present in someone with Asd . He also is worried that dt1 will make fun of his friend, presumably because of the fact that he is dt2's friend . Dt1 does make fun of Dt2 sometimes but in a typical brotherly way and would not be nasty to a friend of dt2.

Dt2 is generally a very considerate child who always seems to care about how we all feel and is always asking are we ok.

I go with my gut feelings that have been there for years , ie Asd traits but sometimes I come across traits that seem fundamental to a diagnosis and I see the opposite in dt2 and it gets me thinking
Anybody with a dc that really seems to care what is thought of them and others intensely with an Asd diagnosis?

Sorry for the length of my post

[paranoid2]

Thanks. I think it?s the fact that he seems to be quite able to put himself in someone else?s shoes that makes me question it , in that he not only worries about what others think of him but he worries about how others will worry about what others think of them if that makes any sense.
Maybe it?s the fact that he worries about it at all and talks about it is in itself a trait. I suppose the whole social relationship thing just comes more naturally to NT kids and they don?t have to think about it, they go with the flow more.

Most of the time I am happy with the diagnosis and DT2 is definitely not NT but because he was late getting diagnosed and he was deemed an unusual case I get small rumblings of doubt. I know it doesn?t really matter as we have to deal with the symptoms and not the label but I can?t help it

[NoHaudinMaWheest]

I understand what you mean about seeing things that don't fit the 'typical' Asd profile and doubting the diagnosis. My Ds was also diagnosed at 10. He is now 16 and some of the more obvious Asd stuff has almost disappeared. Meltdowns over minor stuff for example. He has also always had a greater degree of empathy than the books etc would lead me to believe was compatible with Asd.
I think that the answer is that there is no typical Asd person. Presentation differs depending on age, personality, stress levels, comorbid features and as it is developmental willl change in each individual over time. With my Ds you only have to see him in a stressful situation to be sure of the diagnosis.

BTW he is a minecraft geek as well.

[moosemama]

Yes, ds1 is also 10 and was dx with AS when he was almost 9.

He has just this year started noticing the differences between him and his peers and worrying about what people with think of him. Last night he was concerned that he has a friend coming round for his birthday and our kitchen needs replastering and redecorating. This time last year he wouldn't have even noticed the kitchen needed doing, let alone worried what other people would think, but it seems to be part of a larger developmental leap regarding his levels of awareness in general. In fact I have just been to a meeting at his school and they also mentioned noticing some signs of a new level of self-awareness etc.

As for putting himself in someone else's shoes, ds can do this, depending on the situation and in fact is often hypersensitive the possibilities of others being upset. I think that's because thinking of others is something we feel is important as a whole family and he has had it modelled and taught to him from a young age. We have taught him that if he struggles to understand someone else's viewpoint he should try and think of a time when he was in a similar position to them and remember how he felt at that time, as that will give him a degree of insight into who they might be feeling and help him work out what to do.

I also have times when I niggle and worry about his dx. I have even found myself wondering if I somehow pushed them into dx him - which is ridiculous - he was dx by a multi-disciplinary team and had a very clear ADOS result. I worry myself silly that they've got it wrong, then I'll observe him from a distance, say in the playground at school drop-off and it's blatantly obvious that he has AS, even to the untrained observer. To us he is just ds1, he is who he is, quirks, traits. meltdowns and all, I tend to forget that his behaviour isn't NT.

On top of that, what you said about your ds worrying that he won't have anything to talk to his friends about, what he should say and do etc, is indicative of AS because it just doesn't come naturally to him, he feels he has to overthink everything and plan each encounter to make sure he gets it right, iyswim.

Children with AS don't lack empathy, just the ability to read other people easily, which means they don't always grasp how they are feeling and respond appropriately. Many children who have AS are extremely sensitive and it has been suggested that, in some cases, it's this hypersensitivity to emotion that causes some children to shut down and present some of the autistic traits that are so isolating to them.

Your doubts and concerns are very common and perfectly understandable. I think many of us go through similar.

[moosemama]

NoHaudin, makes some very good points.

... and mine is another Minecraft geek - but then so is his NT brother.

[KOKOagainandagain]

DS1 is hyperaware of the details - like obsessing about whether the decor is appropriate - whereas most NT kids would be oblivious. Your DS seems to be concered about 'passing for normal' - this is not a concern of NT kids.

DS1 also appears to care too much about being accepted into whichever peer groups he longs to join and this can look like an intense friendship. However, 'friendships' tend to be functional - like in your example above - your DS does not miss his friend but misses his ticket .

[paranoid2]

Thank you to everyone. Very helpful posts.
Moosemama , I have the same fear about handing them a diagnosis. They said at the time that they had never seen anyone come in with so much information about their DS and I worry that they read too much into it, although I did have a list of reasons for no diagnosis. When I got the report they had quoted a lot of my observations which I know they had to take on board, but the niggle remains and in some ways I wish I had kept quiet about some but that would have been wrong too. It would be easier if it had all been very clear but his ADOS was not conclusive and they had to do a school observation . However your point about observing from a distance is relevant. I only have to do that too to notice his differences. I think it's the fact that as you say, suddenlly he is becoming more self aware and it causes the niggles

Can't win! I spent years at the " isn't he/is he stage" , scared that he was. Then it was relief that we had the answer although a few years ago I couldn't imagine that I would be relieved at an Asd diagnosis. Now I get afraid that he is not Asd and that they got it wrong.

Ah well he is happy as larry at the moment on minecraft , building away. Actually that's another thing. He is very inventive on Minecraft, something that he never was when he played with Lego . he used to build complicated models but he always followed instructions and had no interest in creating his own inventions. Suddenly he is creating all sorts of things and improvising

[moosemama]

Paranoid, he sounds very similar to my ds1 - who has also been building away on minecraft this evening - well every evening truth be told. I'm amazed at how creative he gets on it as well.

He was exactly the same with lego. He would ask for specific sets, build them and that was that - never created his own models. He did look like he was starting to after I bought him a big bundle of mixed lego off ebay and a lego ideas book for Christmas, but it didn't last long.

[OhYeaBaby]

my ds does care what people think of him - but completely misinterprets their responses to him -and like Keeping says focuses on things that they actually aren't going to care about in the least - and is obvlivious to how other things he does (such as correcting their grammar ) which really p* them off.

[paranoid2]

Yes we have the grammar thing and punctuation thing too - thankfully not with friends ( I think).
Yes moosemama they sound similar. I think minecraft could be here for a while! We have only had it for 2 weeks but I can tell

[thriftychic]

paranoid , i feel exactly like you about ds2 who is now 14. He had the ados test at 11 and i was told its not AS , then after 2 years of massive meltdowns and me keep saying ' well something must be causing them' we were sent for a second opinion and AS was diagnosed .
i worry that i said too much . I worry the doc who did the second opinion decided to ignore what had gone before , take a fresh look but only saw ds2 once for an hour .
ds was out on his bike on monday night with a mate from school in the park , his mate fell off and badly cut his thumb . ds2 rang him an ambulance , looked after him , went and got him a drink etc . this is the kid that appears to be the ultimate in selfish where i am concerned !

[moosemama]

Thrifty, the thing is, behaving in a caring and responsible way and looking after people doesn't preclude AS. What can appear to be selfishness or disinterest can come from not being emotionally literate enough to handle or understand their feelings.

Also, having AS can be a distinct advantage when it comes to being calm in a crisis. They can see that there's a problem and instantly look for the solution, rather than getting all upset on the other person's behalf. Your ds knew that a badly cut had needed medical attention and has probably learned the facts about injured people needing support and hydration etc - so he just got on with it - whereas there's every chance that a group of nt kids would have panicked and run around like a load of clucking chickens before working out what to do.

It's unlikely that anything you said would or could have forced them to make the decision to diagnose your ds. It's not easy at all to get a diagnosis of AS and they don't take the decision lightly. The person you went to for the second opinion may only have met your ds for an hour, but would have had access to all the previous information/records and have considered the whole picture before coming to a decision.

Please don't worry that you said too much. Honestly, you can't say too much, the more you say the better. They need as much information as possible so that they can get a complete and honest picture of the child. As long as you only told them the truth, you can't possibly have said anything that would make them diagnose AS inappropriately. I think it's pretty common to have these worries, but please try not to be so hard on yourself.

[paranoid2]

It?s a strange feeling isn?t it Thrifty because on the one hand you are happy that your DS is displaying empathy and understanding how others feel but it brings out other emotions too.
I think the thing for me is that I had researched a great deal about ASD (mainly on MN) for years and I think I was able to see the subtle traits that were there. But then I worried that I was overanalysing everything and if I looked hard enough I could find ASD traits in DT1 also. He is very obsessive and goes on and on about his interests. Overall he is way, way harder work than DT2, however in my heart I know he is completely and utterly NT.
I also try and remind myself that although the people that diagnosed DT2 only saw him for a short time and I worry that they over relied on my extensive notes, they discussed him with his teacher, EP and other professionals who had dealt with him over the years

[moosemama]

Ds1's Ed Psych and the Lead ASD Specialist Inclusion Team Leader both told me that they had little doubt that ds had ASD almost as soon as they started observing him in the classroom.

These people are highly experienced and have years of observing children in the same setting and know what they are looking at/for.

At the time I was a bit about them saying that, but then I realised that, other than when I helped out in ds's class one day a week in year 1, I had never observed him in a classroom and so couldn't possibly know how he behaves/reacts etc. I thought back to those days in year 1 and realised that what I thought was him just being clingy and acting up because I was there was actually pretty much the behaviours the EP and Inclusion Leader were seeing in him all these years later - without me there.

It's true to say there are good and bad professionals out there, but when several of them have met and observed a dc and are seeing the same things, we have to trust their judgement.

Paranoid, I am the same with both my nt children. I look at them sometimes and see traits, but that's all they are, traits. Ds2 certainly has quite a few traits, for a start he is obsessive and can bore for England on his favourite subjects, he also shares some of the physical issues that ds1 has, but for different reasons (we have recently found out he has joint hypermobility syndrome), but he is highly sociable and gets on with literally everyone, is patient, thoughtful and empathic - particular with his siblings and although not as academic as ds1, has absolutely no problems at school. There is no way on earth he would ever get a dx of AS. I often wonder how much the traits he does have came out of being so close to ds1 and very much influenced by him. Ds2 is extremely passive and hates conflict, so is highly (in fact too) tolerant of ds1's demands and controls and as a result has similar interests to ds1, because he will only play with ds2 on his terms and that means either share his interests or play on your own!

It's only when there are enough of traits that they start to impact on someone's ability to live a typical life and to cope with the reality of living in this world that there starts to be a problem. I personally don't like the phrase 'we are all on the spectrum' that is often quoted. The way I see it is that a lot of ASD traits are simply exaggerations or magnifications of nt behaviour and that's why we find ourselves suddenly seeing traits in almost everyone once we start reading up on ASD.

[thriftychic]

im sure youre right moosemama .
ds2 cares what people think very much , he often says i have shown him up and he always wants to wear the brands of clothes that he sees on other teens , he hates to think that he hasnt got the latest phone or trainers or whatever. but , weve had lots of incidents at school where he has called people names just because he doesnt particularly like them when its been pretty much uncalled for , so made himself unpopular that way sometimes .

I remember the lego , he would buy the kits and have me help him build them , that was fine but with the huge box of random lego he would get really mad saying he couldnt think what to build with it .
ds2 was asked to go somewhere with his gran last week, he went and then later said he hadnt really wanted to go but didnt want ti offend her , so he can predict what someone else might feel but unfortunatly he doesnt care about my feelings and is utterly selfish . i think that is what i described to the doctor without realising that actually he does put himself in others shoes , just not mine or his dads! so who knows .

[Oblomov]

I feel exactly the same. Worrying whether ds1 really is AS. He is 9 and minecraft obsessed. Many AS are, like my ds, anxious , and want to be liked. He too was worried that a friend coming round would find him boring.

[Oblomov]

Agree with moose. I often wonder if me, dh, ds2 and just about everyone else I know has AS traits, now. But the thing is, seriously we all do , a bit.