What to tell my son?

[Mookamoo]

Hi

 

I am wondering how people approached the problem of what to tell their sons/daughters etc once they have been given a diagnosis. Our son (aged 6) has been diagnosed with Asbsergers and has been receiving educational support for over a year now. He is doing well in mainstream school but they have to try a lot of extra strategies to keep him manageable.

 

He has a special desk he can use outside the class room, if often given special one to one treatment at playtimes, which he finds very difficult and is given different work to do if it doesn't challenge, or involves group co-operation.

 

This is now adding up and he is aware he is 'different' and his classmates are also becoming aware that he is treated differently.

 

What I am worried about is that if we tell him he has 'Asbergers' he will think he is ill and panic.

 

Has anyone had a any sucess with telling their children, or anything that I should avoid?

 

Thanks

 

S

[pearl]

Hi

There was another thread on this recently, check out this

[sueeltringham]

Hi Mookamu,

 

We are in a similar situation. My son is six and just got an AS/HFA diagnosis last year. When we were going for all the appointments we told him we were going to find out why he thinks differently and have so far told him his brain is a little different/special to other children, which means that he finds some things hard (insert eg.s here) and some things easier (numbers and reading for us). That's all we've said so far, but we do chat about things occasionally. So far he's not aware that he gets special help, though he does have his own space in the classroom and a LSA. Other children have not worked it out yet, either, but they are incredibly accomodating and tolerant of him. I think you've got to bring it all down to their level and explain it in a very positive way. After, it's not an illness and many very special and gifted people have AS.

 

Sue

[baddad]

Hi -

 

IMO the best way is just to let them 'grow into it' gradually rather than talking it through... That's a bit difficult in this case, as his dx has come at the same time as his awareness of 'differences', but in general I think the more open you are from the outset the less 'different' it feels when they do realise. It's a bit like 'the birds and the bees' - when they ask, tell 'em, and usually their own curiosity means the bridges involved get crossed piecemeal!

Try to be as positive as you can, and find positive role models that they might identify with - Einstein and Mozart as 'probables' are a good starting point, but as a keen golfer my son was really impressed to hear of Mo Norman...

On the downside, I don't think it's helpful to paint too rosey a picture, as there are going to be hurdles and it can be much harder if the 'special' tag has given them an unsustainable sense of superiority when those hurdles come.

 

Hope that's helpful.

 

 

BD

[Karen A]

I found a book called ''different croaks for different folks'' helpful.It is a good book to read with a younger child and is written for children with SEN including ASD.There are also some books written by children with AS about their personal experiences but they tend to be more suitable for slightly older children.Karen.

[Mumble]

I found a book called ''different croaks for different folks'' helpful.

Aaawwwww I want it for my frog collection

[Kazzer]

Hi,

We told JC 10 - in october half term, We were honest and told him from our hearts - that he was diffrent we knew why,

 

we explained that is His brain was wired diffrently to mine and His Dads , he said ok, - asked if he could watch TV !

then has spent the last 5 months asking questions and learning about his AS, He offten asks questions, " am I like this beacuse i have AS?" - Some times we say yes,but some times we say no, it is beacuse you are 10 ,and that's what boys of 10 do...... <'>

we have found Tony Attwoods book - fab and social stories ( Linda gray ) - have been a help.....

 

Jc - has told his closest freinds , that he has AS, ( His cousin -who also has AS, and another cousin ).

 

 

He is trying hard to work with it, we are pleased we told him, however it was a rocky road once the words were out.........

 

we are over that - and are able to be open and honest with him which I hope he will remember .....

 

Be yourself and say what you think is right - no right or wrong answer - but it still made me cry

 

 

Kazzer - JC 10 AS & Dyspraxia ??? is this the spelling

[CupOT]

There is a good book which is very simple called 'Let me tell you about aspergers' I bought it off internet for about �3.99 recently. It's written for friends and family aimed at ages 7 - 11yrs, you might find it useful. Our daughter hasn't got a full diagnosis yet but found it helpful as we picked out the bits that related to her, this helped her understand her differences whilst realizing she wasn't on her own. Her 6yr old sister read it and she related areas to her sister as did her 12yr old brother who thought she just made it up all these years!

 

CupOT

[Mookamoo]

Thanks all - thats a great help.

 

 

He has a break over Easter and is changing teachers after that so we though now would be a good time. I'll let you know how it goes.

[LizC]

Hi Matthew was dx at 5 with aspergers. It is wierd really but he knew he was different and you couldn't keep anything a secret really. he wanted to know why he was getting assessed and why he was feeling like he did. it has never been a problem and no different to him being told he has asthma and excema etc

[Mum2one]

We haven't directly told our son, who is 7 next month, but he is aware that he is different. He quite often says his brain is different to everyone elses and that nobody else in the school is like him.

 

I would like to actually tell him but I don't know how he would react, would definately have to wait for a good day! I would also like the school to explain to his class and possibly the whole school about autism so that they understand why he does some of the things he does. Maybe it would stop some of the teasing which can wind him up, although I suppose it could also have a negative effect. Has anyone else experience of the other children in school being informed?

[baddad]

it has never been a problem and no different to him being told he has asthma and excema etc

 

 

Mum 2 One - I think the above is the right approach in schools too, and when/if it comes up with peers to just discuss it very matter of factly. Most of the 'negative' associations (IMO) arrive with the kids from the parents (I don't think kids are naturally prejudice - just thoughtless - but at around year 4-5 you really do start to see the attitudes of mum and dad emerging in the most awful ways ), so the more of a handle they have on your childs behaviour before those influences emerge the more likely they are to reject them, because they can see for themselves that the assumptions don't 'fit'...

 

The other positive to discussing openly as and when it comes up is that it teaches the child how to do the same thing. My son will tell people about his autism quite conversationally (at the dr's a couple of weeks ago a nurse asked what he did in the half term - he said 'communication group', she said 'what's that?' he said, 'well I'm autistic and in communication group we learn stuff that helps us to understand other people better') when it's relevent, but doesn't mention it at all when it's not.

 

I think whole school awareness raising is a good idea generally, but better if applied to disability issues across the board rather than being autism specific.

The downside (IMO) of 'waiting for the right time' is that chances are the kid is aware of some differences anyway, and having answers is always preferable to assumptions... Additionally, 'why didn't you tell me earler?' can emerge as 'why did you need to hide it from me?' - the latter by definition implying all sorts of negatives.

 

L&P

 

BD

[av16]

It's tricky but I agree with baddad about being open about things. When our son was diagnosed 2 yrs ago in March we debated about what to do. He knew he was different and he had already been assessed for ADHD- we had discussed this many times but they referred us for ADOS as he doesn't have ADHD. We didn't tell him how he was different as we were worried that he would panic about being ill. We planned to tell him during the summer holidays. Unfortunately in the April when we went for a meeting at CAMHS 2 psychologists asked us (in front of him) 'How has he coped with his diagnosis of Autism' .

He is a bright boy and we could tell that he understood what they were saying - we had some terrible scenes after that meeting and a lot of explaining.

 

In hindsight we should have told him - matter of factly. However 2 years on he still will not accept his diagnosis and doesn't want anyone to know about it. He hates me using this forum.

Whether this is due to how he found out I don't know

[sandyn]

Oh boy, what a hard thing to do. My son is nearly 9 and I told him about Aspergers/autstism about 8 months ago.

 

I love Kathy Hoopman books. Her pictorial - All Cats Have Aspergers - is great. I hate cats and so does my aspie, but we both enjoyed this. The other book that we have read is the Blue Bottle Mysteries (again by Kathy Hoopman) - this is a fiction book about a boy discovering he has Aspergers. There are more in the series, but we haven't read them yet.

[Janey]

I love Kathy Hoopman books. Her pictorial - All Cats Have Aspergers - is great. I hate cats and so does my aspie, but we both enjoyed this. The other book that we have read is the Blue Bottle Mysteries (again by Kathy Hoopman) - this is a fiction book about a boy discovering he has Aspergers. There are more in the series, but we haven't read them yet.

 

I used these books to tell Toby about his ASD they're really good. Toby identified with the main Character in the Blue Bottle Mystery straight away and he was quite happy to find out that he was the same. He had begun to notice that he was 'different' and it was definitely the right time and thing to do to tell him. I'm not sure how much he understands of his autism but we are quite open about it and it now makes it possible to explain the things he finds difficult.

 

Janey