When and how to tell??

[chris54]

My son A was diagnosed with AS about 5 months ago. This is after about 2 years of seeing all sorts of people, going down various roots to find an answer to his problems.The final diagnoses is "High functioning autism spectrum disorder presenting so Aspergers syndrome". If he had not had early developmental problems it would be straightforward "AS".

 

I think what was happening is that his problems were being seen in isolation and to start with no one was looking at things as a whole, we are as guilty of this as anyone else.

 

Anyway he knows that he has problems and accepts them and has always felt apart/different from other children, what I really want help with is how do we tell him that what he has has a name. He is very bright and will probably have no trouble taking it in.

To be honest we, his mum and me, are only really now getting to grips with it all our selves.

 

So when, how and how much do we say to him?

 

Chris.

[Marion]

[Hi Chris, when we told our son it was like "wow" how lucky r u! Dont know if this is right but it seemed to work for us, tried to make it as positive as possible.Ds wants to be an animator, apparently Steven Spielberg has AS so that helped, be strong, maz

[Tally]

I think it's important to wait until you are confident in yourselves how you feel about it, so that you can present it in the right light.

 

There are some books especially written to help you explain Asperger's to your child. One of these might be a good place to start.

[Cat]

We learnt on the job as they say. That was because the elder of our two was 13 before he got a diagnosis of AS six weeks after our 3 year old had been diagnosed with HFA. I do agree with Tally that knowing your subject helps when you have to explain it to your kids but I also found that it was best to do this in bite size chunks when there was an appropriate moment. Our eldest wanted to know about his condition and I had been told that one of the most important things was to make sure that he understood that he was not going to grow out of it. That said we made sure that we were as positive as we could be about his AS - not easy as it followed on from a breakdown but we got round that by saying that now everyone knew about his AS life would be easier for him and did our best to make it so. Because of this our youngest has grown up with his diagnosis and although he did not really understand or know what we were talking about when he was 3 the benefits of him knowing from being so small have been brilliant - for him. Learning about himself and how he ticks has made a big impact on him and he has a really good idea of himself and how he works.

 

Everyone is different no matter who we are. Having autism is just a difference and it does not make you a bad person and it does not make you special it just makes you you - at least that is what we have told our sons.

 

Cat

[Flora]

I think it depends on the age of the child too.

 

When I told Bill it was quite soon after his dx and he was just turned 9. I didn't do the sitting him down thing. I just waited until the moment felt right and told him. I can't even remember the words I used.

 

A word of caution though: Not sure how many others have experienced this, but after I'd told Bill and he'd absorbed it, he started trying to use it as an excuse... he would yell out a plaintive 'I can't help it... I've got a diseeeeease' Again I can't remember how I dealt with this either (it was a few years ago now), but I did quickly nip it in the bud.

 

Flora

[malcolmmatthews]

Chris 54,

 

How old is your son? Mine was diagnosed when he was about 5 yrs. old. We started talking with him about what AS is pretty early on. Now that he's 10, we can be even much more open. It helps his teachers to know as well, and we make it a point to meet with his teacher at the beginning of each year to discuss our son's particular areas of strength and weakness.

 

I just wrote a book called WINNING AURELIA (for which I'm currently seeking an agent) about an Aspie child chess prodigy who has a crush on the girl across the street. One of my favourite chapters is the one where the main character's mother and father sit down with him over dinner and discuss his AS. At one point, they refer to it as a "super power." And like most super powers, they explain, AS comes with its own version of kryptonite. Owen (the main character) is a brilliant chess player, but he has trouble in social settings. By keeping the conversation open, light-hearted, and on-going, the family is better able to deal with issues they'll have down the road.

 

In a case of life imitating art, my wife and I used the chapter to help us in our dealings with our son.

 

So far so good!

[oxgirl]

I drew it for my son. He was about 7 and was upset one day and ended up blurting out that he wasn't like the other kids at school. I hadn't realized that he was aware and it started us talking about it. Actually, I think I left it for a few days because he was upset at the time and I wanted him to be calm when we were talking, so I started off with, 'you remember how you said you weren't like the other kids', etc. etc. and went on from there. Then I drew a line to represent the spectrum and I drew people without autism at one end. I drew a picture of a lad he knew with severe autism at the other end and I drew J further up the line, near the non-autistic people, and explained about him having 'a little bit of autism', talking about how he likes to do this and that, etc. Being quite young, this was what I felt was appropiate for him at the time. Obviously, as the years have gone on (he's now 14) we've fed him more and more bits of info and he's now fully aware (although not happy) about his AS.

 

Good luck with it.

 

~ Mel ~

Edited September 8, 2008 by oxgirl

[Diane]

Hi,

 

My sons clinical psychologist explained to my son that he had AS as at the time I would not have been able to answer his questions and I was feeling very emotional about the whole business and I was still trying to reach an understanding myself. I was with my son when this was done and my son did ask questions that I would not have had an answer for.

 

My son was 13 when he was diagnosed. A while after his diagnosis I gave him can I tell you about Aspergers Syndrome? by Jude Welton the book is aimed at children between 7 - 15 years old. I have also given it to a friend of my sons mother and she said she found it really useful as she now understands my son better and has talked to her own son about how life can be for my DS. I do not worry so much when he with them because they understand about his anxiety.

 

I remeber being where you are now.

 

Diane

[Zosmum]

Hi

 

Z got her full dx age 10/11 and I just sat her down one day after a meltdown(that is once she was calm enough to be sat down) and told her the reason she did things like this were because............

 

I also told her it was a reason for it happening and not an excuse for it. We went into all the "yes you are different" chit-chat but pointed out that everyone is different in one way or another and what a boring world we would live in if everyone was the same, liking the same things. Tried to keep it light and easy for her to understand and seemed to get some of what I was saying through to her.

She hasn't really said much about it since but she just kind of shuts these things out of her head. She doesn't quetion things and has never asked "Why?"

 

Maybe I'm one of the lucky ones in that she doesn't question things but she does say that she just wants to be normal.

 

Soz for waffling

 

Zosmum

[chris54]

Thanks everyone for your help.

 

We will do a bit of thinking about it all, make sure we have all the answers and then sit him down and tell him.

 

That is of course if we can get him to sit still that long.

 

A is 8 by the way.

He is on the go all the time, never sits still. But most nights he is in bed by 9, off to sleep as his head hits the pillow and most days its 7am before we see him. So it is not to bad. Always been the same.

 

Thanks.

 

Chris.

[Flora]

Chris, I'm not sure if they've been mentioned in this thread (I'm still too bleary eyed to read through the whole thread again).... but there are books available for children to help them understand ASD. I can't remember any titles off hand but if you search the NAS website you will find them on there.

 

Flora

[chris54]

Just a bit off an update.

 

Well Iv told son, but he doesn't really know what I'm talking about as he does not see that he has any problems, to him it is everyone else that is is out of step with him.

 

When I pointed out thing like hurting his "Friends " at school, "Yeah but they were spoiling my game".

( I did talk to his teacher about that one and they understand what caused it and try to avoid the situations.)

 

To some extent it is probably that we have always micromanaged his condition and that he has never or hardly ever had any big issues at home.

 

At school I have always felt that he sees himself as more of an observer rather that a participant, and joins in thing just to hummer the teachers etc. This is very much as I felt when at school, Really most of my life.

 

 

Off the subject a moment , they have a residential trip at school in the spring. Two nights away, that will be the first time he has ever spent a night away from home. "I don't want to go"" Why not" " They want know what I like to eat".

Now I keep getting reminded to wright a list of what he likes to eat for when he goes on the trip.