Just dropped the A-bomb

[Greensleeves]

we've just sat our 7yo ds1 down and told him he has Aspergers, what it is, etc

am feeling very wobbly and a bit tearful

he wasn't happy about it although we tried really hard to present it as something positive and fascinating

his first reaction was "it sounds like an illness" and "why couldn't you just keep quiet about it"

we had a long talk about it and discussed things like famous scientists who had ASD and about special interests and high intelligence etc, and also explained that knowing about it can help both him and the adults around him to understand why he finds certain things hard and how to support him

for some reason I feel worse about it all now than I did when he was diagnosed

anyone else been through this?

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No - but didn't want to read and run. I'm sure someone will have some wise advise.

Big hugs to you and DS.

Yes Greensleeves, ds2 was dx with hfa in 2007 when he was 6 and after a couple of months we told him and his siblings that he was autistic. I spent ages preparing what I was going to say and it was a bit of an anti climax when it was all over. They listened, and took as much on board as they could at that time. I cried buckets when I had a minute on my own and felt dreadful - wasn't sure if we had done the right thing, etc.

However, we are about 3 years on now and I'm glad it's all out in the open, we can explain ds2's behaviours to his siblings and himself (and peers) and just be free and honest about it. I can't imagine it any other way, it was the right thing for us x

Sorry no experience (yet) - I wonder how to tell my own son.

He will come to appreciate you telling him, I am sure. Imagine how he would feel if you didn't tell him...

Best wishes

Hi Greensleeves, I do know how you are feeling. I was really worried about telling my 7 year old ds about his dx. (He was given a verbal dx of Aspergers in January - although we have since been told that this dx is quite likely to change. )

Its a toughie, I really didn't want to say anything that would make him feel weird or different, but then again he already does feel different, so what we were trying to do was reassure that it was ok.

It sounds like we approached it in a similar way to you. We sat him down and talked a bit about the spectrum and how different people are at different points along the scale, with him being very near the top end. We also said that basically Aspergers is just the name of the man that first understood children that had struggles and problems like ds has and that some of the worlds cleverest and most brilliant scientists etc had Aspergers.

We explained that everyone in the world has some difficulties and problems in some areas of their lives and being dx with Aspergers just means that we and the doctors have been better able to identify which things he struggles with, which is a good thing as it means we and they can help him. We tried to focus on the fact that, now we know what the problem is, we can help him to improve on or even overcome some of those problems and hopefully he will be happier and more relaxed as a result.

That was about as far as we took it at the time, but he has asked a few more questions since.

He has asked if it is an illness and we said it isn't an illness, its just a different way of thinking and experiencing the world.

On the face of things he seemed to take it quite well, but he tends to internalise worries quite a bit, so I think we will have to be the ones to keep up the dialogue and make it just a normal part of every day life.

I suppose it will take a while for in to sink in and process and then he may come back with more questions. I really don't know what the best way to handle it is, I guess we just have to play it by ear and keep reinforcing the positive slant as much as we can.

There is a factsheet on the NAS websitehere about telling children about their dx, but to be honest I did't find it all that helpful personally.

Sorry, not much help really, but wanted you to know you aren't alone.

thanks everyone

I think we had to tell him now, really, because more measures need to be put into place in school, he is finding things harder and harder to cope with and there have been some problems between him and his teacher lately

dh and I both feel a bit like we have taken away his innocence though, it's probably irrational but I just feel really sad

he asked dh at bedtime "is there any way you can change your basic personality using hypnosis?"

Oh, poor thing. DS said similar things, he asked if there was a cure for AS.

It is good that he knows; with all the interventions he will realise anyway and he'd probably end up overhearing it in discussions as well.

Do you have any of the books written about AS or by people with ASD? I liked the Kenneth Hall one for DS, as he is quite like him. Luke Jackson has written one which is good too but he was less like DS so not so helpful for us. There is one called 'Can I tell you about Asperger Syndrome?' which is probably good for your DS's age. I also remember browsing a book which had profiles of famous people who had ASD traits but I can't remember the title right now.

Just adding to the book recommendations, one that's more a pause for thought and a celebration than full of helpful information, but brilliant, all the same: I am Utterly Unique. It's an A-Z of all the positive things about aspergers/HFA.

It sounds like you may have a bit of an adjustment period to deal with and lots of questions, but yes, your DS will be noticing he's different, anyhow, so it is a good thing that he learns why.

We've been quite open with DS1(6) about his autism for a while, since he knows he has different treatment and routines at school (he doesn't even stay for a full day, at the moment), plus DS2 is also autistic and DS1 has actually noticed that he is different from other kids his age. His attitude when we talk about his is along the lines of "well, yeah, everyone's different, of course!" but he gets a bit more uptight about his brother. I think that's because DS1 isn't actually very self aware, so simply doesn't appreciate how different from his peers he is. DS2 not being able to talk is blindingly obvious, though!

we have recently told DD1 she is 7years too, as there is one to one work happening with her and alot of people going inot school for her and she asked. We are lucky one of our good friends has a dd who is great friends with our dd, and her older brother has ASD. We explained that some peoples brains just work differently, not wrongly just differently. We have also just brought the book, "let me tel, you about Aspergers" (think thats right will look up later) and weirdly enough 2 things happened this weekend. On Friday she told me she would be doing Autism questions every friday and she had been shown a report that said she had Autism (IEP I think), and we talked that though, and then this evening Misdee (my sis) called to say she had emailed her daugther and told her too I was a little shocked as didnt know if she understood, but clearly she did.

I guess in a long way round is, he will take time but he'll be ok. maybe he just needs time to deal with it and will come back for questions later. Do you have any friends he knows with ASD that he would see as positive??
good luck

I told dd1 (6) a few weeks ago that she has AS and her sister has Autism.

She started asking questions about dd2 (ASD) and was asking 'why doesn't dd2 talk as much as me?' and 'why is dd2 allowed to do things i'm not?' so i explained to her that dd2 has Autism and finds it hard to communicate and dd2 does not understand rules etc. Dd1 then asked 'if dd2 has Autism, what do i have?' so i told her that she has Aspergers which is why she gets anxious and upset easily.

She took it very well, i told her that her and dd2 are very special, that they think differently then some people and are both very bright/clever (dd1 has a very high IQ).

Now when i tell her off for being naughty she say's 'i can't help it mummy, i have Aspergers' .

I tell dd2 that there are good points of having AS:

As people are always on time/reliable.

They have great memories (dd1 has loads of useless facts stored in her head but also remembers peoples bithdays and important things.

They stick to the rules, which is a good thing (no one likes a cheat).

Hi,
My DS was diagnosed AS at 5 1/2 yrs. The consultant told us all together in his office. He explained to my son the pros and cons of it. The consultant was brilliant. My DS took it all in his stride and finally had an explanation of why he was 'eccentric'.

I, on the other hand, felt very upset as it completely changed my 'plans' for my sons life. School/Uni/Work/Family it all changed in that instant and it was almost a grieving process. I felt I had lost the child I thought I had and he had been replaced with something else. (sounds awful to think it, I know.

Strangely he was such a weird baby that we called him a changeling (fairy child. LOL

My husband was uneffected by the diagnosis as he has AS himself and just sat there, his usual bland, unemotional self.

I cried when we got the diagnosis even though we had waited a year for it and wanted to get it. We told ds fairly soon afterwards.

We read through the diagnosis letter with our ds and he took it fairly matter-of-factly. We also read Tony Attwood's book (the Complete Guide to AS) and talked about it together because it's so positive and you can have fun discussing meanings of different phrases together.

I liked the Blue Bottle Mystery book which is about a boy being diagnosed with Aspergers, it's written for Primary school children.

Going to Legoland and getting the special stamp on our hands was a bit of a boost as well.

Aw, Greensleeves

I'm sorry you're having such a hard time of it.

I'm in the process of paving the way for a formal diagnosis for my 7yo ds. I've been fortunate in as much as DH has AS too, so I have been able to tell ds that he is very clever like Daddy but - like Daddy - sometimes finds it difficult being around people and gets upset easily. Our GP was fab too - kept emphasising the positive aspects and talked about Bill Gates a lot.

I had to tell my ds why he'd been to the GP and why we are soon (hopefully!) going to be seeing another doctor. I am no expert in all of this, and am very much feeling my way, but at least I have dh to use as an example.

I'm sorry I can't offer you a better answer, but you have all my sympathy.