Aspergers/ASD support thread

studentphil

PasturesNew wrote: »

Thanks


Thank you.


Yes, I first heard the word when my sister said "I think dad has Aspergers" and now I see he does. But he doesn't know.

Over Xmas I mentioned it to my other sister and she said my other sister has it. Clearly my other sister doesn't realise she has it yet either.

So I appear to be the only one who has taken it on board and looked.

There are no children in our family. 3 daughters, no kids. So there is no contact with other family kids to have had this spotted in the younger generation. My father is not from the UK and so no access to any cousins who might have, although there are only 2 cousins on his side of the family anyway and only one baby now. So the whole family will be either side of the "diagnosis years" and separated by geography.


Yes. You have to, because there's no alternative. That's why I've always said to people I do the things I do. I have to work because that's how you get money. I have to go through all the horrid experiences in life caused by interacting with others because I have to. There is no alternative.


When I've been told I was harsh, or upset people or whatever, I've never understood why. So I've ended up often saying nothing when I can. But often it's out before I know because I can only know it's not right when I've been told.


Yes, I do this a lot. I focus on small things, notice/stare then go into my own world. Doesn't even have to be anything interesting or special. Just the end of a pattern on a curtain, a corner of a letter on a sign.


Yes I have managed to build a life in the last few months based almost entirely around "me". Now I know what has caused my life problems I will be able to structure that life even better.

No, I have no children. I am Ye Olde Spinster. Never lived with anybody, never married, no kids.

Not formally diagnosed yet. Only really discovered I am AS in October. Not even signed up with a Doctor where I live yet (things like this can take years as I avoid doing things not totally necessary - and I had an AS meltdown in a Doctor waiting room about 5 years ago and I know it is in my notes as I saw it noted, so I don't like going to Doctors in case they thought I was a loony as my file is clearly flagged!)



My life has been dotted with hundreds of little instances like this that have been haunting me, trying to find answers to why people have said certain things to me. And now I can see each one was where I was different and somebody had picked up on it. So it's given me closure on all those times as now I know what went on, what they meant/why they said it.


This is a familiar feeling

PN, I think the most important thing is that now you know you are AS that it takes all that weight off your shoulders. It is best to just learn ways to cope with life now that you don't have that to deal with.

PasturesNew

studentphil wrote: »

....

Stop coming here and giving inexperienced advice to people.

Or, just p155 0ff you annoying kn0bhe4d

Chollita

studentphil wrote: »

PN, I think the most important thing is that now you know you are AS that it takes all that weight off your shoulders. It is best to just learn ways to cope with life now that you don't have that to deal with.

I actually agree with SP on this one. Since I first began to suspect that I have AS, I decided that regardless of an 'official' diagnosis, I could use the advice given to AS people so that I could find ways of coping with the world.

LandyAndy

PasturesNew wrote: »

Stop coming here and giving inexperienced advice to people.

Or, just p155 0ff you annoying kn0bhe4d

I thought Aspies were supposed to be direct in telling people what they thought:D .

PS. This is a joke;) .

blue_monkey_2

Hi everyone, hope all is OK your end. I have come with bad news for me and some good news for all of us.

Bad news first, been giving 15 points and even if they give us the points we should have (they have not) then it is still not enough. So it has been a bit of a down day but I'll take it as it comes. I am going to speak to Social Services on Monday so I have them as back up if we end up somewhere grimy and unsuitable.

Good news for me. Ryan has had his referral letter today, it states that they (the medical team) have discussed his problems (per the schools notes and the notes I sent) and he will be seen. They have also referred him to SALT if I consent. So I am going to rather than not and have them rule this side out if need be so at least an acknowledgement is a start on the road (if you know what I mean).

now the good news for all of us. I have emailed Legoland as the kids have dearly wanted to go all of last year but the queues have put me off as you usually get to queue for 1-2 hours and I know there is no way as Ryan will have had enough after 10 minutes and will be climbing barriers, etc... so, just out of pure chance I have emailed Legoland.... Here is there reply.....


<FONT face=ChaletOffice color=blue size=2><SPAN style="FONT-SIZE: 11pt; COLOR: blue; FONT-FAMILY: ChaletOffice">Thank you for your enquiry to LEGOLAND Windsor. We have to schemes that may be of use you and your family for your trip to the park, a carers pass and the exit pass.

Savvy_Sue

Great news about the good news, BM! Sure you will LOVE Legoland.

I had a thought about your DS 'helping' you when you are on the keyboard. I am tentatively going to suggest that it MIGHT help if you had another keyboard - either his own 'computer' or a 'proper' keyboard, just not attached to anything.

It's very tentative, because when DS1 was of an age to want to 'help' me, we spent most of out time swapping tools. Washing up: I have a sponge and give him a brush - he wants the sponge. So we swap. But clearly the brush is THE thing to use, so we have to swap again. Only if I have the sponge, THAT must be the thing to use, so we swap AGAIN! Same in the garden, small trowel each, but whichever one I have must be THE one he has to have, so we swap, and swap back, and swap back ... Sometimes I wondered if it would help if we had identical tools, but I'm not sure it would have done.

However, your DS is not my DS, so his own keyboard MIGHT work?

MyUserNamesTaken

blue_monkey wrote: »

Hi everyone, hope all is OK your end. I have come with bad news for me and some good news for all of us.

Bad news first, been giving 15 points and even if they give us the points we should have (they have not) then it is still not enough. So it has been a bit of a down day but I'll take it as it comes. I am going to speak to Social Services on Monday so I have them as back up if we end up somewhere grimy and unsuitable.

Good news for me. Ryan has had his referral letter today, it states that they (the medical team) have discussed his problems (per the schools notes and the notes I sent) and he will be seen. They have also referred him to SALT if I consent. So I am going to rather than not and have them rule this side out if need be so at least an acknowledgement is a start on the road (if you know what I mean).

now the good news for all of us. I have emailed Legoland as the kids have dearly wanted to go all of last year but the queues have put me off as you usually get to queue for 1-2 hours and I know there is no way as Ryan will have had enough after 10 minutes and will be climbing barriers, etc... so, just out of pure chance I have emailed Legoland.... Here is there reply.....


<FONT face=ChaletOffice color=blue size=2><SPAN style="FONT-SIZE: 11pt; COLOR: blue; FONT-FAMILY: ChaletOffice">Thank you for your enquiry to LEGOLAND Windsor. We have to schemes that may be of use you and your family for your trip to the park, a carers pass and the exit pass.

Hi BM,
Sorry to hear your bad news. Here's hoping things sort themselves out for you.

Regarding Legoland...this sort of thing applies to most places (zoos, amusement parks, etc) across Europe and the US. As long as you can show that your child is disabled (DLA letter, or such), you will normally be entitled to some sort of discount as a carer, as well as fast tracking (for amusement parks). I know they do this at Alton Towers too - you get a wrist band, as does the person you are caring for, which enables you to use the disabled person's entrance to the rides and miss the queues. This helps parents with kids on the spectrum or ADHD, as queuing up can be a bit of a nightmare (crowds, etc). Definitely works in Europe too....you ask when you go to pay, or look up details on the attraction's website. Another thing you can get is a Cinema Exhibitor's card, which, for £5 for 3 years, allows one carer to go in free when you take a disabled child to the cinema. Well worth it if you go to the pics with your kids.

http://www.ceacard.co.uk/

justontime

Thank you for starting this thread, I have been reading through the many posts and I found it very helpful to read about your experiences and insights. My 13 year old son was diagnosed with high functioning autistic spectrum disorder when he was 11, but I think I knew that he had aspergers since he was a toddler. I hope it is OK to tell you a bit about him and his various behaviour traits. From my point of view each stage of growing up hs brought its own challenges, but I think he started to be more troubled by his aspergers from the age of about 10 when his peer group began to get more independent and he couldn't keep up. He only manages fairly superficial friendships and he gets very frustrated when he can't do what the others are doing. It would be good if anyone with experience of a teenager with aspergers could offer some guidance please.

Anyway this should give you an idea of Sam's experience of growing up with aspergers.

He didn't sleep through the night until he was 3 and even then he had a tendency to get up at night and go downstairs to play, the Health Visitor had him on sleep diaries and all sorts of things. This behaviour got more difficult as he got older as it is harder to contain him. He had all sorts of rituals and 'odd' behaviour. This involved sorting lego bricks into lines, removing the seats and cushions from the lounge furniture to create 'stepping stones' so that he never had to tread on the carpet; turning the knobs on the washing machine so that they all pointed the same way (he boiled my washing on many occasions). He was totally non compliant with developmental tests, etc. and screamed every time he went to the surgery. The health visitor suspected Aspergers Syndrome at that stage.

He coped fairly well with 2.5hr nursery sessions (from age 2yrs 9mths), but when he went to LEA nursery I had to withdraw him because he couldn't cope. He claimed that one teacher shouted at him (true I think) and he cannot cope with being shouted at. He stayed at his previous nursery then joined Reception at primary school. Even at his first nursery he would not join in certain activities and he showed signs of unusual thought processes, e.g. asking questions like "Why do rabbits do round poos and dogs do long ones?"

In Yr. 1 he developed an irrational fear that a teacher was trying to drown him. This caused conflict between him and some of his teachers, he even screamed at the headteacher when she attempted to make him get into the swimming pool. We eventually found that he had been troubled by a news item in the summer where a boy went missing from a beach and was found drowned days later. It had played on his mind and he kept thinking about what it would be like to drown.

He has always been obsessive, having pet subjects that he researches in infinite detail, at present it is Super heroes, previous subjects have included James Bond, dinosaurs, certain events in history, hamster reproduction, etc. He is and always has been very literal, I remember him having a massive tantrum because there was no ice on the iced bun I bought for him; and I had to fetch him from Nursery once because he was devastated when someone said it was 'raining cats and dogs'. He still has difficulty recognising the meaning of such phrases and this can cause him significant distress. Even now he struggles to understand irony and he sometimes has to ask why a joke is funny, but he is better than he used to be. Often he will label his speech especially when making some attempt at humour e.g. “this is sarcasm” or “this is a joke”.

His rituals have always involved clothes, when aged about 3 he always insisted on wearing a shirt and tie and he refused to wear a sweatshirt until he was about 6 (however cold he was). Even now he never wears a coat and he will not even touch a raincoat, he would rather get wet. From age 3 he had a phase of about 18 months when he constantly wore a tail (a belt/tie/scarf or a toy tail). He has always had a passion for dressing up, but in many other ways he hates to be the focus of attention and avoided having to go up for awards in assembly, etc. He hates being looked at and cannot cope with being laughed at (e.g. if something he says makes me laugh). When he started school he had to colour code his pants with the PE mats that he expected to use that day. Even now he can only do well in a test if he is wearing the correct underwear. It really does seem to influence his outcome so it must have something to do with him believing in himself.

He loves facts and reads almost exclusively non fiction. He read early and has been good at getting info from various sources, e.g. newspapers, Radio 4, internet, reference books, conversation. He still avoids fiction, but earlier in his school life books like 'Cat in the Hat' made him cry because they didn't make sense. He can't bear things not to make sense, he finds it terribly disturbing. He was always very articulate and knowledgeable for his age but he can't manage abstract thought. On the surface he is bubbly and outgoing but he struggles with one to one encounters unless he is talking about one of his pet subjects. I have become more aware over recent years that his social skills are not as good as people assume. He doesn't pick up on signals from people he is with, he doesn't truly interact with people, it is all superficial and he often misunderstands people's motives. He hates talking about feelings or emotions and avoids any discussions about such things. He is very rigid in his thinking, he is very black and white and unable to change his opinion as a result of reasoning. Once a thought is fixed in his head he hangs on to it however irrational e.g. believing that his maths teacher was a witch because she had a mole on her nose. Even now he has not quite established what is real and what is fantasy e.g. partly believing in witches having magic powers and could harm him.

Several events spring to mind. When he was in Yr. 1 I came downstairs one night to find that Sam had got both hamster cages on the floor and open. I asked what he was doing and he said he had been mating the hamsters, he explained that he had read the breeding chapter in the pet book and he had checked that they had done it properly. He knew exactly when to expect babies, but thankfully no babies arrived. A few days later I got up and found him reading the chapter on reproduction out loud to the hamsters so that they would get it right next time!!

When he was almost 7 I was driving him to his Youth Club one afternoon after school. He said "You know I'm gay don't you mum". I had a thousand different thoughts in the space of a few seconds but I managed to keep the car on the road.
I said "that's interesting, what does that mean". I got such a detailed answer that I had no doubt that he understood. I made little further comment as I didn't want to respond in a way that made him feel rejected. This continued for several weeks until one day Samuel made a comment about a shapely lady on TV, I commented that I thought he was gay. He very seriously explained that he had only said that to stop people saying that he fancied a girl in his class!

He will not do anything unless he understands the rules absolutely. He was once invited to a disco party (he was about 8 or 9). He didn't want to go because he couldn't dance, so he ate the invitation! He refuses to go to school sports clubs as he doesn't fully understand the rules.

When he was in Yr. 4 they had the 'boys talk' at school. The teacher told them to use deodorant and mentioned Lynx. At the time there was an advert for Lynx where women's clothes undid themselves as the man wearing lynx walked past. Sam worried about his teacher in case it happened to him and made him embarrassed! The following year Sam asked me for a book about periods because he didn't want the girls to know more about anything than he did!

Somehow he doesn't seem to receive information in the way that other people do. He often feels 'got at' and confused by how people respond to him. He processes things differently and he can't explain himself. He is often angry, always chaotic (but what looks like a mess to me has some sort of order in it for him), and he is very exhausting to live with. He is much more vulnerable than he seems and often appears to be isolated or to isolate himself. Some people seem to think he should be made to cope with the real world sink or swim, but I know from previous experience that this approach just provokes more odd behaviour and gets him into trouble, e.g. re the swimming problem, school treated him as if he was just being naughty and they were very firm with him. He ended up shrieking at the headteacher in front of the whole class. To her credit she recognised that she was dealing with a terrified child and eventually with careful support he overcame his fear.

He did not enjoy Year 5 and seemed very unhappy at school. We had huge problems with him refusing to go to school and turning every morning into a major drama. He was sent home from school two or three times feeling ill, but recovered rapidly as soon as he left school, and he would claim to be ill almost daily - at times he was extremely convincing. To be blunt, his teacher was a large part of the problem. He didn’t seem to like Sam because he takes a bit of getting to know and his teacher just made inaccurate assumptions about him. Sam found him difficult, because he was very inconsistent. Sam saw the GP, and she assured me that there was nothing physically wrong. She was very supportive of him and made it quite clear that he was experiencing tummy aches/aches & pains, but the cause was probably emotional. She thinks he should be supported and encouraged rather than criticised or treated as though he has been naughty. His willingness to attend school improved slightly in Year 6, but he was still unhappy.

Sam has never been especially well organised, but since age 9 or 10 he has been even more chaotic. He has also opted out of all his after school activities, e.g. Boys Brigade, Music School, etc...The only thing that he does willingly is his one to one academic tuition, but even then he refuses to ever tell me what he has done! To some extent I think he is bored or frustrated at school and because he can’t tackle subjects in as much depth as he would like, so he simply can't be bothered and does the minimum necessary. I think he enjoys being able to do things in more detail with his tutor, as he is not limited by the curriculum.

His move to senior school was difficult as he doesn't like change but he gradually adapted and to some extent school has adapted to him too. There have been countless examples of him misunderstanding, but I will just detail one of them. I noticed that whe I collected him from school (Yr 7) he was always desperate for the toilet. He claimed they were not allowed to use the toiet at the end of school, this was nonsense of course, but he had taken the head teacher's instruction literally - that the boys had to walk down the stairs in an orderly manner at home time . The toilets were upstairs, so 'obviously' he couldnt get to them by going downstairs!!

Sorry for going on, but it is so good to come across people who understand some of the challenges we face.

Savvy_Sue

If I PROMISE not to laugh if I ever meet your DS, am I allowed to have a little private giggle at the thought of reading aloud to the hamsters?

If I could be more helpful than that, I would. DS1 made friends at secondary school who made him look positively normal! And he has never minded being 'different', which we were warned was a key thing: if he wanted to be like everyone else, and found he couldn't, he might become upset / distressed etc.

I hope Seven-Day-Weekend will be along in a mo as her son is older and she might be able to encourage you better.

Strapped

blue_monkey, I have been to Legoland with someone with physical disabilities and I have to say that they were the best place we've been to. They couldn't do enough to help and we never had to queue. They had also obviously trained their staff well, as we didn't have any of the "talking only to the carer" stuff you so often get. I know it's a different situation to taking an Aspie child, but it bodes well I think.