How do we tell son about diagnosis?

[judellie]

Hello everyone,

I haven't posted for a couple of months as things have sort of settled down a bit since then.

However I saw the paed psychiatrist today with ds1's teacher and did the asd diagnostic questionaire with them. The result is that he has a diagnosis of high functioning autism. The paed psych was a little surprised how highly he scored, she thought he would be borderline AS. She also said that because he was so bright he has been masking his problems very well when he has to ie at school.

The teacher has said he was no trouble in class and just got on with things, however when asked specific questions it turns out the ds1 hardly ever speaks in class, only when asked a direct question. He never initiates any conversation and will sit doing nothing rather than ask for help!

It was quite revealing having his teacher there, she told things that have never been said about ds1 before!

Any way, sorry to ramble, my main question now is how do we tell ds1 about this, he is starting to realise that not everyone behaves like him. How would you explain HFA to a 10 (nearly 11) year old.

Psychiatrist said to explain things to ds2 (8) as he bears the brunt of ds1 aggression, she recommended 'Freaks, Geeks and Aspergers' for him to read if he was able. I have this book but it may be beyond him at the moment. Ds3 is only 3 and too young to understand, but realises already that big brother is (in his own words) 'always naughty'.

 

Feel totally shattered now, and emotionally drained, although it didn't come as a surprise.

 

Thanks for reading

 

Jude xx

[sueeltringham]

Hugs for you!

Although we knew our son's diagnosis (HFA/AS), it came as a surprise to the professionals, just how high he scored too! I remember still feeling incredibly shocked, even though we knew. My son's much younger (5 at diagnosis), but we have explained it that his brain works and thinks differently to other people. He had started wondering why he was different to the rest of his class. We've tried to be very open and very positive. It was difficult to do otherwise as we had loads of different appointments with different professionals and ds wanted to know where and why we were going. I'm sure other people will have loads of advice to give.

 

Sue

[LittleRae]

hi Jude. Sorry, in a rush so can't give you a full answer.

 

We used 'Can I tell you about Asperger Syndrome' by Jude Welton. our DS was 9 at the time. I also printed off lots of stuff from the internet. I have the Freak, Geeks book but haven't given it to DS (now 12) because of the title.

 

The question has been asked lots of times on here, so if you do a search it should bring up a few posts. Just remember that he may not accept it at first. Don't push it but be ready to answer questions as and when he asks

 

Hope all goes well

 

just found these: http://www.asd-forum.org.uk/forum/index.ph...&hl=telling

 

http://www.asd-forum.org.uk/forum/index.ph...&hl=telling

 

http://www.asd-forum.org.uk/forum/index.ph...&hl=telling

Edited June 25, 2008 by LittleRae

[judellie]

Thank you for your thoughts and for the links, I'll have a look at them tonight.

Although it wasn't unexpected I've found I've been walking around in a daze for the last couple of days, can't get my head together at all.

I also thought ds1 might freak at the title of the Luke Jackson book, and I also don't want him to use the diagnosis as an excuse for bad behaviour!

Has anyone else found their ds/dd has done this?

 

Jude xx

[llisa32]

Hiya,

 

Takes a while for diagnosis to settle in even idf you were expecting it - so no wonder u feel drained <'>

 

I recomend a book called 'Learning to live with high functioning autism' - by Mike Stanton.

 

Perhaps not for the kiddies, but I found it to be a really positive book on the whole - not too long, and gives a good understanding of the various manisfestation and reactions etc.

 

I got copies of this for my sons school and various relatives - and it did help them all to view the various positives rathar than focus on the dificulties alone.

 

As for naughty...haven't noticed any change in my 8yr old - he was diagnosed in Feb - we told him about the diagnosis and hes been the same level of behaviour as he was before - oso if he's naughty he gets told off - same as ever

 

He does though seem much more at ease with himself now he knows he is infact a little different maybe than his peers, and the reason why

 

Hope you find a way that works for you <'>

Edited June 26, 2008 by llisa32

[KarenT]

I also don't want him to use the diagnosis as an excuse for bad behaviour!

Has anyone else found their ds/dd has done this?

J's teacher (at the time of assessment) said that she didn't want him to get a dx in case he used it as an excuse to be naughty. I told this to the psychologist who was assessing him and she said "Well of course he will, he's seven, who wouldn't?".

 

In fact, J did often say at times of stress "I have Asperger's, you know", especially in school, which just added fuel to their fire that he was using it as an excuse. But knowing J as I do, and knowing some of the situations he faced at that time, I believe it was more about him saying "Look, I have Asperger's, this is hard for me and I need help" rather than using it to get away with bad behaviour.

 

I think it's a risk we take when we tell our children their dx. They have to feel their way around it and push a few boundaries, it takes a while to come to terms with it and feel comfortable - some longer than others. But I felt it was better to deal with that in Y3 and 4 than to leave disclosure till he was older and have to handle it amid hormones and SATS and 11 year old cockiness. J's worked his way through "I have AS, you know" and just accepts it as part of himself now. He's quite cool with it.

 

karen

x

[Flora]

J's teacher (at the time of assessment) said that she didn't want him to get a dx in case he used it as an excuse to be naughty. I told this to the psychologist who was assessing him and she said "Well of course he will, he's seven, who wouldn't?".

 

karen

x

 

Absolutely!!! However quite rightly that shouldn't stop them from being told. My son was 9 when I told him and I was on guard for any exploitation by him He went through a phase of saying 'I can't help it... I've got a diseeeeeease' but that was quickly nipped in the bud. On the positive side he is now 14 and is very much of the opinion that AS isn't an excuse, in fact he finds it irritating when people assume he can/can't do/understand things because he has AS. He does me proud in this respect. He has a very health insight into AS and how it affects him.

 

I'm very pro telling them, as soon as they are of an age to be able to talk about it.

 

Flora

[Kala]

Dear Judellie,

 

I run a small social and tutorial club for ASD children in Surrey and have used Peter Vermeulens work book with my students (6-16years). I found it very useful and the children had fun using it. It has a variety of sections and some are useful for 9 year olds. However, the workbook takes you right through a variety of teenage issues.

Please look his book below ~ hope you will find this useful. If you have any further questions please do not hesitate in contacting me.

 

Best Regards,

 

Kala

 

I am Special

 

Introducing Children and Young People to their Autistic Spectrum Disorder

Peter Vermeulen

 

Paperback, ISBN: 978-1-85302-916-5, 240pp, 2000, �19.99, $31.95

 

Category: Autism and Asperger Syndrome

 

About Peter Vermeulen:

 

Peter Vermeulen trained as a counsellor and educationalist and has worked for many years with autistic children. At present he is Autism Consultant and Lecturer at Vlaamse Dienst Autisme, where he edits a bi-monthly magazine Autisme, and a freelance lecturer and trainer. He also works freelance at the Department of Psychology and Pedagogical Sciences and the Department of Sociology at the University of Leuven. He has published extensively on autism.

Edited June 27, 2008 by Kala

[lynne]

Dear Jude,

 

Some of our children know they are different and this is a good place to start. Ask why they think they are different to other children in there class.

 

What upsets them etc.

 

We also said Autism is no excuse to be naughty. But they do need to be treated differently for things like assembly etc.

 

Take care I hope it goes well

 

Lynne

[judellie]

Thank you all so much for taking the time to reply, it really helps to know that I'm not alone and that other people care.

 

I will look for some of the book suggestions and will also ring his psychiatrist this week for her advice - she is very approchable. Last week she said about telling ds2, but said nothing about telling M, and I never thought to ask at the time!!

 

Thank you all

 

Jude xx