Telling the child of their condition?

[Claire82]

Hi, my ds has recently been dx with asd/aspergers, although we have 'known' for a lot longer. The trouble is I am struggling with what, if anything to tell ds about his condition. He will be 8 in July and part of me thinks that maybe he is too young to be told anything and we'll just wait until he's older, but part of me thinks we should try to explain a little of it to him, so that he understands why he gets into situations (mostly at school) that get him into trouble.

The thing is, I don't really know where to begin. Have any of you told your aspie children at such a young age? If so, how and what did you say?

 

I thought that maybe we should just tell him that the messages in his brain sometimes get mixed up and that is why he ends up feeling confused/angry/frightened etc.

This is so hard, it was bad enough trying to explain it to (adult) relatives who can understand the terminolgy used, but to try to explain it to a child, and about himself too, I don't want to hurt his feelings either, I don't want him getting uspet and thinking that there's something wrong with him! I am rambling now, sorry lol!

 

Any advice would be much appreciated, thanks.

Claire

[justamum]

My son asked when he was 5 why he was different. Although we had no, and still have no diagnoses he is probably autistic. When he asked we explained he had a short circuit in his brain, he is in to robots, and sometimes things he hears and sees get lost in his short circuit.

 

Unfortunately when he was in school the teachers decided to be the parent and tell him there was nothing wrong with him and he was just a bad boy then go to chastise me for telling him there is They then were surprised when I bit back and my son got totally confused which lead to more 'bad behaviour' as he now felt he was not understood!

[Frangipani]

I was always completely open and honest with my son, he realised he was different and found many things very difficult to do day to day compared to his peers. So it was always an ongoing, gently gently with what I felt was necessary for him at that time. As he got older he would ask more questions and I would along with the Paediatrician just go with questions he felt he needed to know.

 

If I gave him too much information it would only stress him out.

 

So little by little as he was ready. There are also many good books in Resources that can help prepare you if you feel anxious about it.

 

He always felt much better about things when we would talk, as he could understand himself and others better.

 

Often Retail therapy would follow as I would have a fit of anxiety over it all and swamp him with new things to take his mind off any bad thoughts or 'why me' thoughts. I always made him think he was the best son in the world, and how much I loved him.

 

Thats what was really important to him, to feel reassured.

 

[ogsplosh]

martian in the playground

 

Maybe this book will help?

[gothschild]

I also felt that it was better to be honest with J.

 

He is quite interested in his condition and I think he is also a bit relieved to know that there is a reason for the way he behaves. I told him as much as I thought he could understand when he got his official diagnosis at 9. We read through books from the library and leaflets from the NAS to help with the explanation. Before his dx I told him that his brain behaved in a different way to others and that it would sometimes make him confused, if this happened and he was unsure I told him to ask me or a teacher to explain things to him.

 

I can totally understand how its a tricky thing to do because you never know how much to say and do not want to make them afraid of their condition.

I hope everything goes well <'>

[pearl]

JP was about 10 & it was unplanned though I had thought about it IYSWIM, it grew out of a conversation about why he had a TA. I explained his brain was wired differently, and to explain the different degrees of autism (he knew a profoundly autistic boy so needed to know) I said it was like being on the beach. NT's are on the sand: he was paddling in the shallows: the boy he knew was swimming out at sea. I dont know where that came from or even to this day if it was a good analogy, but he "got" it straight away & has often referred to himself as "paddling" over the years

[bid]

We were always open with my DS when he was little (dx's came between 5 and 7) because we were concerned that as he was having so many assessments, hospital stays, plus regular physio/OT, he might imagine far worse things than the truth.

 

IMO, I think it's good if it is something that is just part of everyday life and talked about naturally when it arises.

 

Good luck <'>

 

Bid

Edited May 31, 2008 by bid

[SarahSH]

I agree about talking about it and finding a way that seems natural to your family - whether it's the paddling idea or circuits/wired idea or any other way that feels like the way your family talks.

 

We did talk about it with my son (now 16, diagnosed about 8/9), but not as a disability, as a way of thinking and seeing the world. I suppose I'm just saying I couldn't separate my son from the way his mind works, so I can't talk about it as a terrible thing or some kind of disease or even badness like the school above.

 

I genuinely don't think there are only two ways, the NT way (what's that?) and non NT. I think each person makes sense of life in their own way. Granted some people find it harder than others, but they also see things that others don't, that seem totally obvious to them.

 

AS seems to me to be an intrinsic part of my son's personality. I have found his perspective on the world to be original and fascinating and I have learnt a lot from him. I certainly would say that he has to overcome obstacles that other people don't, but I admire him for that and he knows it. Those obstacles are often a result of extreme sensitivity in my view, which has a lot to teach those of us with thicker skins. He's also had to learn to deal with the fact that even though he's so sensitive, he still can't always have the world re-arranged around him, much though he might prefer it.

 

I've found AS (in him and in other people we know) to be very much on a graded scale, depending on how stressed he is, how much information comes in at once, age, situation, all kinds of factors.

 

It can feel like a real problem sometimes and has certainly not made my son's life any easier. But there's no doubt he's a real original and I'm proud of him, and I have tried to talk about his AS in those terms.

 

all the best,

Sarah

[pearl]

Lovely post, Sarah <'>

[Thompsons]

We've just been really casual about it.. I think Levi knows.. He's heard us talking about it, ect. And he's had tests and I know he's aware that he's a little different from other children, but he's never actually asked or said, "I have aspergers."

We're wondering if he's a little in denial at the moment or simply doesn't want to know, so we don't push it. If he asks though, we'll explain it to him Having my issues explained to me really helped because it finally felt like people understood and I wasn't alone. It helped me to understand what was going on with me too. I guess kids are all different and you need to handle it with your childs sensitivities in mind.

Edited June 1, 2008 by Thompsons

[pookie170]

The way I see it, its a good idea to treat the subject as you would any other. If your child was adopted, for instance, all the advice I've ever read states that its best to ensure the child knows this, so it becomes part of their identity in a positive way. If that makes sense?

 

We've tried our best to keep Cal informed- obviously, as he gets older he becomes more able to handle certain aspects of it, but to us its just another part of Cal, like his blue eyes, skinny feet, aptitude in I.T. or his gravitation towards toilet humour- he wouldn't be the same without it!

 

Having said that, he's going through a bit of denial at the moment, but I'm trying to get him to look at the positives ...I think he's becoming aware of his differences, socially and hates the fact that his personality doesn't appeal to everyone. But he'd have to get used to that whether he was NT or AS!

 

I love your analogy, Pearl, must relay it to Cal at an appropriate moment. Wot about those of us who might be on the sand, but are buried up to our necks, though???!!

 

Esther x

 

(pass us a spade, would you?)

[Frangipani]

or AS!

 

I love your analogy, Pearl, must relay it to Cal at an appropriate moment. Wot about those of us who might be on the sand, but are buried up to our necks, though???!!

 

Esther x

 

(pass us a spade, would you?)

 

I couldn't have put that better, pass me the spade please.

 

 

I think my son rides the surf, tries it all, then by choice goes back to sea. Its where he feels most comfortable, but, he has a very cool boat.

 

[Babylicious]

We've told Paris that she has Aspergers but she doesn't quite get that she's different.

[pearl]

Wot about those of us who might be on the sand, but are buried up to our necks, though???!!

 

or digging an even bigger hole for ourselves?

[Kinda]

Hi

 

My son is currently 24years and while we have known for the last 4-5 years that he has AS issues in terms of behaviour, relationships etc he has a masters degree, and a good job. He was diagnosed as dysphasic when he was younger and had great trouble with being different, so much so he didn't want his statement of special needs recognised and just wanted to be treated as normal.

 

We had been advised he was now OK but during university we noticed things weren't quite right and not all of it could be put down to "the teens". It was only when talking to a work colleague that he said he thought my son may have AS so i researched it and found it gave me a lot of answers regarding his behaviour and relationship.

 

I've never mentioned it to my son because I'm not sure a) what good it would do him now and I worry about the fact that he seems to be happy without the knowledge. Having said that he has asked me why I seem to read a lot about AS.

 

He goes to a counsellor who specialises in AS so not sure what is said in those sessions, nor if it is touched on or not and guess if I was to ring the counsellor up he wouldn't tell me anything?

 

 

I guess I just feel telling him now would not solve anything at present. Guess I also don't want to risk changing his current happy state but it does worry me whether I'm doing the right thing.

 

Kinda