telling child they have aspergers

[montague]

I havean 11year old son who has aspergers. He was diagnosed at 2 and a half. He is a bright well behaved boy and has just started at his local grammar school. We have never sat him down and told him of his condition as up until now we have not thought he would understand or that it would have been any benefit to him . We have told him however that he has social skill difficulties but he doesn't like listening to any of our advice and there are no social skill groups in our area. His school is keen for us to tell him but we are worried it might upset him and once said we can't take it back. We also worry what he mightt tell his peers aat school and will they look at him even more oddly. Is this just our pride? Any useful tips from anyone who has gone or is going through this experience, good or bad?

[phasmid]

I'd suspect that he knows there is something 'differerent' about himself already. In which case he might just need to know what that something 'different' is. My AS son was diagnosed at 10 nearly 11 he had figured out that 'something' made him stand apart from his peers. For him his dx was the final piece of the jigsaw. It made him realise why his behaviour was different from his peers (I can't say 'friends' as he didn't really have any).

 

I think it's a judgement call. You know him best. Perhaps you could try a softly softly approach and find a tv show that features AS in some way and watch it together. He may put the pieces in place for himself.

 

Not much to offer other than that, except to say 'hello and welcome' and whatever you decide I hope this is the first of many postings.

[helenl53]

Myabe having some of the books written by kids with AS could help.

 

For instance, Aspergers the Universe and Everything by Kevin Hall was invaluable for me when faced with the same difficulty and he really related to Kevin.

 

Hope this helps

 

Best wishes

 

HelenL

[annie]

Hi Montague,

 

Welcome to the forum <'>

 

I found a site on the net written by a boy with Asperger's who was the same age as my son at the time. He could really relate to what the lad had written. Alex could also relate to 'Freeks, geeks and Asperger's' by Luke Jackson, but by the time he read it he was probably a bit older than your son is at the moment.

 

If I can find the site I was talking about I will post it on here.

 

It is difficult to know what to do, but we found that as Alex got older (he's 16 now)he needed explainations and felt it was better to be honest.

 

Annie

<'>

[Guest flutter]

we told our 11 year old daughter and she is relieved

hubs used the words "jigsaw" when describing her difficulties to her

i think tis best to go with instincs

Cx

[barefoot wend]

Montague

 

Welcome. I think it is always difficult to know when or if to tell your child. I think it's a personal decision as we all know our children best. Certainly better than school.

 

One thing that might be a good idea, if you do decide to tell him, is to get some support from your local Child and Family Health Services (or Child and Adolescent Mental Health Services) via your GP. They might be able to help by discussing it with your son in case he has any particular issues.

 

I'm sure you'll find lots more advice here. Keep posting, let us know how you get on.

 

Best wishes

 

Barefoot

[mossgrove]

It is always a personal decsion as to how/when to tell your child.

 

Sometimes it is tempting to think that you are saving your child from having to be different by not telling them.

 

Children are perceptive creatures though, By his teenage years he will be very aware that he is different, and it will be helpful for him to know how/why he is different.

 

I agree with the book recommendations, I have read and recommend both.

 

Simon

[annie]

This link will take you to Jesica Kingsley Publishers, there are all kinds of books on the link ie for parents, children and teachers.

 

http://www.jkp.com/catalogue/index.php/cat/autism

 

Annie

XX

[montague]

I would like to very much thank everyone who replied to my query. I have never been in a chat room before and I can,t tell you how nice it was to hear from people who are going through the same thing. It was an amazing relief.

We did have a big talk with Rob last night as he seemed to want to talk. I think it went well although he got upset, obviously, it was good to be honest with him. I'm afraid we didn't give it a name though.

[phasmid]

I am sure he will ask more about things, including what 'it' is called when he is ready to. Well done for bitting the bullet on this, especialy as he was ready to talk about things. This board is a godsend for anyone with ASD in the family and no-one to turn to.

[Maria]

Hello Montague

 

your situation sounds a bit like ours. Our son (12) has been diagnosed at the age of 11. We struggled to tell him but finally did. Many will be surprised when I say I am still not sure whether it was a good idea. He did not like the fact of being different at all. He read Luke Jackson's book and could relate to some things , but not at all to others. I must also say that I am sometimes still not a hundred percent convinced that he actually has Aperger's. His confidence has grown so much in the last 2 years.

Asperger's is not really an issue anymore . But now his got the label and he might ask himself, what's wrong with me? I'm not that different, am I? I don't know. What if he was wrongly diagnosed? Sorry, I think I am drifting off now. Just wanted to say that not every child feels having a diagnosis is liberating.

 

Maria

[sara]

Hi Montague

 

I told my 7 year old son today as I felt I needed to explain some things to him as we have made a very possitive decision to remove him from main stream school and home educate him. So to approach this topic with him I asked if he felt different from the other children in his class, of which he replied yes and explained that he doesn't want to do the same work as them and that he is always in trouble. I told him that this difference is because he is special and very clever and that the work the other children are doing is not intresting enough for someone who is as smart as he is. I then told him that this is because he has Aspergers of which he responded"I know i've got aspergers i've heared you mention it before but I didn't know what it meant." He was very pleased to be told. I' m sure that this will need to be discussed more as he grows older but it will be something that will be discussed openly from now on.

 

 

Hope all goes just as well for you

 

sara

[Minxygal]

I can only tell you how it was for us. My 11 year old has Aspergers and telling him was the best thing that xould have happened. Deep down James always knew he was different. Getting the diagnosis and telling him about it was really healthy for him as it gave him permission to be himself.

[bid]

I think that all children are different. My son had his dx at 7, and we told him then.

 

He didn't really 'accept' things until he was nearly 15, but I don't regret telling him at all.

 

For us it was important to have told him the truth. We were concerned that he was having so many assessments that he would imagine something really dreadful was wrong with him.

 

But really we all know our children best, and what they can take in, etc, at any given age.

 

Good luck, and trust your instincts.

 

Bid

[jomarie]

My son got his dx in August & the paed told him a small amount about it, since then it's been open for discussion whenever he feels like it.

 

He seemed to be in denial about it until I gave him 'asperger syndrome, the universe & everything' by kenneth hall, M related to so much in the book that he then seemed happy to talk about it. He's just finished reading 'blue bottle mystery' & 'of mice & aliens', the asperger adventure books. He enjoyed them so much that I found a note at the top of the stairs yesterday requesting more books like them!!

 

The one thing we stick with here is the thought that everyones different in one way or another, only M's different has a name, & he seems totally cool with that idea. The difference in him has been brilliant since he found out... much more relaxed & settled in himself.

 

Mind now we're going through a stage where he trys to get away with all sorts & blames it on his as I've had to point out that I know the difference between his as difficulties & him just pushing his luck

[Surrey]

Its everyones personal decision - but I feel that you cant learn how to cope with a difficulty if you dont know you have one!!! My son is the same age and has just started secondary school. He knows he is different and I have told him exactly what is wrong with him so he knows why other people find him 'strange'. He is being taught to accept his problems and find ways around any difficulties that he experiences.

 

I also felt that if other people didnt know they would expect him to behave normally, and this is impossible. Does that make sense?

[BusyLizzie100]

My AS son's younger brother has been 'in the system' since birth and autism was suspected when he was about 4 and confirmed as having an ASD when 4.5. At that time my elder son, then 6.5, said to me one day: 'I think I must have autism too, because I've got lots of the things that X has'. That was such a natural way to introduce the notion that yes, actually, he has Asperger's. At the time we had a fairly woolly diagnosis for him from his paed, which is being clarified as I write - ie, he's being assessed by a fantastic multi-disciplinary team here in Hertfordshire who are trying to work out if ADHD etc plays a part - but that's another story!

 

I think it's amazing that he practically diagnosed himself. As a result, we have always been open about it and tried to be as supportive as possible, although there are those odd occasions when he seems to play on it - then we make it very definite that we can tell what is and what isn't AS. Sometimes I think he's not sure himself, even though he knows he's 'different'.

 

Someone else has referred to Luke Jackson's book Freaks, Geeks and Asperger syndrome, and in that he describes how he eventually 'found out' he had AS and was hugely relieved; his advice is to 'get them told'.

 

I think you have to be guided by your knowledge of your child, but reading that and other books has enlightened me enormously. I've just finished Pretending To Be Normal, by Liane Willey, an AS mother with an AS child, and she discusses how her AS traits have eased off to a certain degree as she has grown older, got to know herself and learnt to cope. Incidentally, she only put a name to her 'difference' when her daughter was diagnosed.

 

Got to dash - the ASD chap is on the move (the AS one is fast asleep, exhausted by trying to be normal all day!)

 

Lizzie