We told our son today about his ASD

[jomica]

After something had gone wrong this morning, my nine year old son asked me why things always kept going wrong for him - why was he like this when his friends were different.

 

We've been working up to telling him about his diagnosis for some time now - spending time discussing problems as they've come up, but never actually giving his Autism a name. This morning I painted the whole picture for him.

 

He sat, cuddled up on my knee, taking it all in and has been quite deep in thought since but has now come out of his shell for the football, his specialist subject. He's now protesting 'cos the wrong team won, in his view! Sorry to all you Liverpool fans!

 

I've told him I'll answer his questions whenever he wants to know more, but something tells me this is going to help him work things out a bit.

 

Not sure what to expect next - any thoughts?

 

Thanks,

Edited June 5, 2006 by jomica

[jen]

We told our son last year that he was autistic. Now when he meets someone new he says he has autism which is full of lots of good things and lots of bad things.

 

Jen

 

 

 

 

 

 

 

After something had gone wrong this morning, my nine year old son asked me why things always kept going wrong for him - why was he like this when his friends were different.

 

We've been working up to telling him about his diagnosis for some time now - spending time discussing problems as they've come up, but never actually giving his Autism a name. This morning I painted the whole picture for him.

 

He sat, cuddled up on my knee, taking it all in and has been quite deep in thought since but has now come out of his shell for the football, his specialist subject. He's now protesting 'cos the wrong team won, in his view! Sorry to all you Liverpool fans!

 

I've told him I'll answer his questions whenever he wants to know more, but something tells me this is going to help him work things out a bit.

 

Not sure what to expect next - any thoughts?

 

Thanks,

[phasmid]

Hi Jomica, we never had this problem as Phas jr knew what we were doing through the dx period. I guess you'll have to sit and wait and see what his reaction is after it has sunk in properly. Sounds like it was the right time to explain it all though.

 

Good luck, you know where we all are if you need us.

[Zemanski]

kids take it in in different ways, some respond immediately and start asking questions others need assimilation time and return to the subject sometimes several months later.

 

Like Phas, we made Com aware throughout the process, he was 6 when it all really started, and he had an initial diagnosis of dyspraxia, so when the consultant told us he told Com at the same time and Com just accepted it all.

 

Every so often Com comes back to it and asks more questions but it is pretty much part of his life now, He is old enough and aware enough, at almost 14, to discuss some of the more theoretical aspects now and he has a pretty good handle on theory of mind, weak central coherence, systematising, etc and can talk about how he sees his AS in terms of these things. He is very aware that he has strengths and weaknesses associated with AS and our biggest problem is helping him not get too frustrated with the weaknesses.

 

Zemanski

[madme]

There are some good books. My son read LuKe Jacksons book and also think it was " Mice and Aliens" He found it helpful at age 8.

[Flora]

Well done for telling him. I hope it makes him feel better.

 

Watch out for this though. When I told William he was fine about it, and he read some bits and pieces I gave him for simple explanations. The weeks following this though he started to use it as an excuse for not cooperating with anything. I remember one day he was being particularly difficult and yelled 'I can't help it, I've got a disease ' It's funny looking back, but I had to explain that he wasn't to stop trying to help himself! I think it's good for kids to know if you think they are ready.

 

Lauren

[jomica]

Thanks everyone for your comments, advice and support.

 

My little fella said nothing else about the subject until just before he was going to bed last night, and then asked whether there was anyone else at his school with autism. He seemed quite relieved when I told him he wasn't the only one - either at school or at his football club.

 

Today the questions have been coming thick and fast - he's wanting to know whether things he knows about himself (eg why am I learning French when I have problems with my own language - good question! One to bring up at the review in a few weeks!!) relate to his autism, or whether other people have the same feelings, etc.

 

He was diagnosed at age 4.5 yrs so it wasn't really appropriate to discuss it with him then, particularly as we weren't sure of his level of understanding. At that age he was echolalic - something he's since grown out of - and unable to make the language work for him at all. Now that he's nine we had begun to feel like we were hiding something from him - although we had talked to him about the basic challenges he was facing, we hadn't given him the language for it.

 

It's early days, but at the moment he seems to be trying to fit everything into a logical place (well, he would, wouldn't he ) and make sense of what we've told him.

 

Thanks again for your support.

[openyoureyes]

HI Jomica

 

I totally agree about the other language thing, out son who is ASD is doing French but after parents evening next year he will not be doing another language apart from English as he has problems understanding this let alone even trying to learn another.

 

our son who is now 11 has known he has Aspergers from a very early age and he totally understands his strengths and weaknesses, but I do agree that sometimes he can use this to his advantage, when he wants his own way he will say that its because of his ASD that he needs it!!!

 

oh well, I prefer he knows and he seems happy about it, as Luke Jackson says "its cool to be different"

 

well done for telling him

[jomica]

It's about three weeks since we told DS9 about his autism. At first he seemed to accept it well and asked loads of questions and started to piece things together. He told us lots of things that he'd never mentioned before about how he feels in certain situations. One day, jokily, he reprimanded me for not having warned him about the impending journey to school - "Mum, you know I don't like surprises", he said!

 

However, three weeks on he seems to be getting more and more worried about the longer term implications and what it means for him. Having seemed to accept it initially, he's now getting distressed about his problems and why they won't go away. We're doing lots of work on the positives in his life, but he can only see the negatives at the moment.

 

Is this usual? Any tips about what to do next, apart from stay as positive as possible?

 

Thanks,

[jen]

You could say as your son gets older that you will both be able to learn better how to handle different situations. This than gives your son stratergies to use in the future.

 

We always tell our child he is the wonderful person he is because he has autism and we would not change him.

 

We also had to teach our son the difference between ASD and temper. We had to tell him after each episode if it was ASD or a temper. We discussed the feelings and how they made him feel.

 

They do have there good days and bad days.

 

Jen

[oracle]

David was 13 when he got his dx and although it was a huge relief for him I knew that he was worried about what he was going to grow up like. So I asked one of my male autistic friends to come and stay with us for a few days telling him, but not David why. It was a very low key visit but David took a great interest in my friend joining us for meals etc, something he did not do at that time. After my friend went home David announced that he was cool and that he could see a great deal of himself in my friend that he liked

 

A few months ago it was David's turn to help a friend whose son was having some problems accepting his dx and what it will mean for him. He does not have David's need to ask questions he simply sits and observes David from a safe distance But he keeps coming back with his Mum and has stopped being as quite as anxious.

 

All of our children are different but for us it helped introducing David to my friend - BUT - I would chose the adult with great care. My friend is cool and a brilliant role modle.

 

Oracle

[elaine1]

awww i hope he will continue to ask questions. we felt our son needed to know about his AS he was beginning to notice the difference between him and his peers the older he got, the more he stood out in a crowd.

 

he was sad but fine about it, i found freaks geeks and aspergers syndrome by luke jackson helped him a great deal. he is 13 and still dips into this book, luke has as and has written clearly and often movingly about his life with as and given some great tips on how to 'cope' with the condition as you get older.

 

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[krystaltps]

"Of Mice and Aliens" is one of Kathy Hoopmann's books. My 7-year-old started reading "Blue Bottle Mystery" last night (another one of Kathy Hoopmann's books). I had got it yesterday when I was at university. I hadn't meant him to start reading it until after the dx was complete, and we had told him, but he had found it in my room and took it into bed with him (I didn't know). He came pounding down the stairs at 11.30, to tell me he had read the first and second chapters of my new book and he was so excited. He was flapping about and telling me that the boy in the book was the same as him and liked computers and science and didn't like sports so that meant it was okay not to like sports and he didn't have to pretend to like them now... and the boy got confused about the funny things that his teacher says just like he does. Bless him. He was so happy. I panicked a bit though, because the character gets diagbosed with Aspergers in chapter nine. But I have decided just to let him read on... it might be a good way of introducing him to the subject. His dx will be complete by Monday, and we'll have the outcome by end of June... so the timing could work out okay.

I think it's great she's written these books for children, as it gives them someone to identify with. It may be worth your while having a look for some of them: there's three in total - the third one is "Lisa and the Lacemaker", and they're published by Jessica Kingsley Publishers. Good luck,

[curra]

I've found a book called "What does it mean to me?" by Catherine Faherty (TEACCH) quite useful to help my son understand himself. It's a workbook in which he chooses the answers that apply to him from a list of alternatives, then we can discuss them if he wants to. There are also answers to typical questions, for example: "autism is not a disease and it does not mean that I am sick."

 

My son has gained more insight and he has been more open to talk about it and value himself.

 

Curra

[misterfredrogers]

I explained to my son last year when he was 6.He agrees he is different,infact he relishes the fact but cant bear the word "aspergers" it doesnt sound nice apparently so it is banned .Him knowing he is different that his brain works differently from the other boys and girls helps him when he gets angry with himself with physical things like swimming or PE go wrong or he gets cross with his peer group for not understanding in his opinion simple things like reading or maths.

[curra]

I explained to my son last year when he was 6.He agrees he is different,infact he relishes the fact but cant bear the word "aspergers" it doesnt sound nice apparently so it is banned .Him knowing he is different that his brain works differently from the other boys and girls helps him when he gets angry with himself with physical things like swimming or PE go wrong or he gets cross with his peer group for not understanding in his opinion simple things like reading or maths.

 

Hi Misterfredrodgers,

 

My son also accepts that he thinks differently but he hates the words "aspergers", "autistic" and "aspie". Have you used any particular word when you explain why he's different from his peers?

 

Curra

[jomica]

Thanks, all, for your comments. My son seems to have settled down again now, just asking questions as they arrive.

 

He's not sure about the word "autism" - he calls it "that A thingy that I've got". I think he's happier to talk about the components eg social skills, communication, etc, rather than the larger picture, but if it helps him to make sense I'm happy to discuss whatever he likes.

 

I'll get the books. They sound useful - although he loves sport and, being so literal, might not identify with that bit!!

 

Thank you.