Aspergers/ASD support thread

justontime

seven-day-weekend wrote: »

Hi, I've only just read Justintime's post, it was so interestring and many of the things sounded like my son when he was younger, especially not wearing appropriate clothing.

He is 28 on January 30th and he still doesn't always wear appropriate clothing. He very rarely wears a fleece or any sort of outer coat (he says he doesn't feel the cold, apparently some Aspie's don't), never wears a raincoat like justintime's son - he too would rather get wet!

Thank you Seven-day-weekend it gives me some encouragement to know that your son has built an independent life for himself, hopefully mine will too in time. How did the school respond to the issue of not wearing a coat raincoat etc. I worry that they probably think I am a useless parent. He is not exactly portable anymore and when we last had a showdown about him having to wear a raincoat (on way to school) he got out of my moving car into the road and ran in front of a van going the other way. I thought I was going to see him killed right in front of me and I was still shaking when I got to work an hour later. But I still get the 'you must make him' type remarks.

I do worry about how he will cope as an adult and if he will stop doing dangerous things. Hopefully he will be like your son and deal with life in his own unique way. I hadn't even considered driving, but that is a few years away yet - he can't ride a bike, he has tried and tried, but he just can't do it (he has a diagnosis of dyspraxia as well).

Savvy_Sue

justontime wrote: »

I worry that they probably think I am a useless parent. He is not exactly portable anymore and when we last had a showdown about him having to wear a raincoat (on way to school) he got out of my moving car into the road and ran in front of a van going the other way. I thought I was going to see him killed right in front of me and I was still shaking when I got to work an hour later. But I still get the 'you must make him' type remarks.

Ask them HOW you make him? Ask them how THEY would make him?

I am expecting a call from DS3's head of house for his constant lateness. How DO I get him out of the shower faster in the mornings? How DO I stop him showering if I think he's running late? How DO I push him out of the house on time? He's taller than me, certainly stronger, but if they have any ideas I'm prepared to listen! And AFAIK he is just a 'normal' teenager. DS1 was generally far better - the rules said be there for registration, so he'd be there for registration, barring disasters!

I didn't know that not wearing coats etc was common with AS: TBH I thought it was just that DS1 didn't like the 'feel' of anything I ever bought him. When he went skiing he did get a ski jacket, and since then he's worn that, so they do learn. Or at least some of them do, sometimes. Although now I have the same problem with DS3, can you believe he goes out in a t-shirt? In January? And for school he NEVER wears anything over his blazer, even though he's standing in the freezing cold waiting for a bus!

PasturesNew

Savvy_Sue wrote: »

I didn't know that not wearing coats etc was common with AS:

I thought not wearing a coat was common to all kids.

Actually, I've not had a coat for about 20 years. I go out without one all of the time. I just can't find one I like... and if I can't find one I like I won't wear one.



I do have a thin kagoul that I will wear if it's raining. I don't care what I look like. Some people think wearing a kagoul is fogey, but to me it's practical as it folds up nice and small and it keeps me a bit dry and it's not annoying.

Snaggles

blue_monkey wrote: »

Something esle though, changing the subject. have any of your children got birthmarks. When Ryan was a baby I thought he had a bruise and it turned to be a cafe au lait mark, we came home and looked at it on the internet and it said that it can be a sign of other problems later on. The mark has not faded and it has grown with him. have any of your children got birthmarks like this at all, it looks like a patch of darker skin on his thigh, that's all.

My Ryan also had a birthmark. His is on his chest. It looked like a dark red bruise when he was born, and then became much larger, bright red, raised and bumpy as he got older. Over the last few years it has subsided until it is almost flat, and has faded to skin colour, so you can barely see it.

I had never heard of this being a sign of anything else before.....something else to add to my list of 'things I want to find out more about'.

Still no diagnosis by the way but CAMHS have given me an 'indication' that we ARE likely to get a diagnosis, and hopefully we should get it on Monday (although I am not holding my breath).

D&DD

Thats good news Snaggles sort of...well you know what I mean Good from a getting help/know what it is prospective hopefully!
We had Camhs today and are now up in the air totally again re schools...Its just one thing after another at the moment and now we have GP's in the morning to request an urgent EEG ho hum!

PasturesNew

I just saw on BBC News 24, some footage from abc news, Oregon (US)

It was a piece, with video footage of a girl. And the "story" is that girls can be autistic too.

Until recently it has been suggested that boys were more often autistic, with a ratio of 4:1. It has since been suggested that the measurement for boys being diagnosed was different for girls. Girls displayed different behaviour.

The footage showed a perfectly normal girl (imho) in a school gym, trying to join in with others. And she couldn't. She was going up to them, speaking, they were sending her packing. God, I know that one!!!

Anyway. The bottom line is, they are starting to take on board that girls can be autistic too.

I just tracked down a link. Here she is.

http://www.abcnews.go.com/Nightline/story?id=4177353&page=1

Scroll down the page a bit, there's a video link on the left.

PasturesNew

Here's something I've wanted to post for a while, but it's difficult because of what I am about to say.

I feel like that Alcoholics Anonymous moment when I have to stand up and say "Hello, my name is ... and I am an alcoholic"

I quite often find it hard to "join in" here, even here I feel estranged. Odd. An outsider. I think it's because so many of the parents here are not AS and it's all so huggy/huggy and supportive, which as an AS person isn't something I can do/understand.



Just thought I'd sort of throw it in there.

seven-day-weekend

justontime wrote: »

Thank you Seven-day-weekend it gives me some encouragement to know that your son has built an independent life for himself, hopefully mine will too in time. How did the school respond to the issue of not wearing a coat raincoat etc. I worry that they probably think I am a useless parent. He is not exactly portable anymore and when we last had a showdown about him having to wear a raincoat (on way to school) he got out of my moving car into the road and ran in front of a van going the other way. I thought I was going to see him killed right in front of me and I was still shaking when I got to work an hour later. But I still get the 'you must make him' type remarks.

I do worry about how he will cope as an adult and if he will stop doing dangerous things. Hopefully he will be like your son and deal with life in his own unique way. I hadn't even considered driving, but that is a few years away yet - he can't ride a bike, he has tried and tried, but he just can't do it (he has a diagnosis of dyspraxia as well).

When Ben was at school AS was not recognised as a condition so he has not been formally diagnosed (although all of us now, including him, know that he has the condition).The school never said anything about him not wearing a coat - he would wear his blazer though. He was quiet and well-behaved at school though - he just wanted to be left alone - although he didn't do any work.. - so I think they just didn't bother with him half the time, although he was called 'lazy' and 'irritating'.

Ben took loads of driving lessons and about five tests when he was 17-18 and failed them all. He only did the lessons because I said he had to and paid for them. Once I didn't make him any more he said he didn't want to bother. he can ride a bike and in fact goes everywhere on it, but he's pretty dangerous.

Ben is quite clumsy and does show signs of dyspraxia - like never having learned to tie a tie. (See comment above about riding bike!)>

A nice colourful post for you! Just a few more things to comment on.

Ben tends to wear the same clothes whatever the weather although he has been known to put a sweatshirt on in the winter instead of walking round in a tee shirt, and he does wear long tousers for work instead of shorts!

His girlfriend, who is 7.5 years younger than him, has been diagnosed AS, so if Ben had have been a few years younger, it would have been picked up at school. We did have to take him to an Ed Psych, who smiled and said he was a 'square peg in a round hole' (a good description I thought), and also the school used to say he was 'unstreetwise' which tbh, I didn't see as a problem.

BTW, most of his school problems were at Primary School, where he was bullied and really unhappy. He liked Secondary School much nbetter where thy didn't mind if he sat up a corner in the playground with a book, and wasn't bullied because he hated football. He still didn't do any work though, even in subjects he liked. We drilled him and made him sit in his room doing past exam papers under exam conditions to practice for his GCSEs however and he ended up with reasonable grades (2Bs 4Cs 1D and an F in French which he could never cope with.

Unlike many Aspies he was quite good at creative writing -eventually. At first we had loads of trouble with it - tears, bad tempers, the lot - he couldn't get it into his head what he had to do.

Then one day he was telling me a story he'd made up. I quietly got a pen and wrote it down for him as best I could. I handed it to him when he had finished and said 'there is your creative writing essay'. Well you should have seen his face. It was like a light has been turned on. He said 'do you mean it is just what comes out of my head?' I told him it was and after that he loved English (he liked the teacher too, and the teacher liked him, which helped). He even had a story sent in to a creative writing competition.

He has had problems sometimes with employmet but as he has matured (and after a spell of three years being unemployed) he has realised that you don't walk out of a job without having another one, or argue with the manager because you think he is doing something wrong. He works at Matalan now, on a minimum wage job, but he likes it for several reasons. One is that he can walk away at the end of his shift and forget about it, the other is that he can didvide the day up into bite-size chunks, which is better for him as he has problems with organisation and sequencing. As he says, he can serve a customer, take their money, wrap their purchase, give them their change, job done. The next customer is a different job. He is bright and friendly and very personable with the customers and has been praised at how fasr and accurate he is on the till.

He can't afford to buy a house, or rent one on his own, but that is not a problem at the moment as he lives in our UK house with two other young men (we live in Spain).

Yes of course we would have liked him to be a Doctor or a Lawyer, but in the end we are just glad he is happy.

Sorry this has turned into such n essay!

seven-day-weekend

By the way, do any of your AS children have sleep disturbances? Ben was never a problem to get to bed, but he quite often had nightmares and has sleepwalked once or twice.

Just wondered if it was relevent to the condition.

PasturesNew

seven-day-weekend wrote: »

By the way, do any of your AS children have sleep disturbances? Ben was never a problem to get to bed, but he quite often had nightmares and has sleepwalked once or twice.

Just wondered if it was relevent to the condition.

I've never slept well. I can't remember ever, in my life, having had a proper/good/full night's sleep. It's 03:47 and here I am, yet again....

When I was young I was always sleepwalking. This (I think) stopped in my early 20s.

When I was young and we went on holiday (holidays were always in a caravan, usually with just 1-2 others and a chemical loo in a farmer's field) my parents had to stay up all the first night as apparently I would climb the walls and try to get out. this was something I would do every time I slept somewhere new. I still can't sleep anywhere new for the first night. After that it's back to my usual sleep problems. But that first night is always an "up all night" time.

I remember when I was 8 and having problems, I was taken to a Doctor and given some black/red capsules. I was told at the time that my problem was that "Other people's brains stop when they go to sleep, yours never does. Your brain never switches off."

I used to have a lot of nightmares too. But I think most kids probably do.