How to tell your child

[Rosie M]

Hi everyone, my 9 yr old son has an AS diagnosis and as he is starting to say that he is different from the others in the family I was thinking that maybe now would be a good time to talk to him. When he was diagnosed the doctor suggested that age 11 would be a good age to tell him but I think that he realises there is something. Can anyone share with me how they spoke to their children and how they phrased it. Am worried as my child is very anxious. Thanks for any advice given.

[Sammysnake]

My daughter is also 9 and was diagnosed a few months ago. In actual fact the paediatrician told her the diagnosis in the meeting but, like your son, she was already becomming aware that she is a little different from her peers. She was feeling unsettled, like she knew she was missing something that everyone else was getting but she didn't even know what it was. I'd talked to her beforehand about the possibility of AS so she was prepared for it - in actual fact she was over the moon to know there was a reason for why she felt like she did and has been very positive ever since. I explained that we all have different strengths and weaknesses and that I felt she had an excellent memory for details and could work out logical problems well but it was harder for her to understand what people might be thinking and to know what the expressions on their faces meant (she agreed with this). I said that sometimes there can be a special name for when particular strengths and weaknesses exist together in a person and if that was the case with her then it was great news because it meant there were other people like her who felt the same way about the world and we could learn from support structures that had helped them and know what to do to support her better. She wanted to know that people cared enough about her to find ways to help her more. Her teacher was already being really supportive and I said the doctor would hopefully give the teacher and myself more ideas on what we could do for her.

 

After the diagnosis her teacher leant us the book 'Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family by Jude Welton' which I cannot recommend highly enough. It's short and simple to read and written from the point of view of a young lad in our children's age range explaining to people about his AS, what is means and how they can help in simple ways. We read through it together and it gave my daughter a voice to explain to me how she feels and made her feel really positive. I also leant in to her nans and grandad to explain to them too. We also looked on the internet for biographies of famous people who many believe had AS - like Charles Darwin. My daughter really identified with him and it made her really happy to know that his sometimes unusual personaility traits actually made him a better scientist and paved the way for his world-shattering theories.

 

I hope this helps and that your experience is as positive as ours so far. My daughter's friend at school also has AS and at his birthday party (where there was a quiet room set aside - how cool is that!!) she was giving him a high 5 and saying - 'Aspies Rule!'. So far she's really happy to be an Aspie.

 

Good luck, Sam

[Karen A]

Hi.

I was about to suggest 'Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family by Jude Welton'but Sam is ahead of me.

We found it very useful.

Karen.

[Karen A]

Hi.

This might be useful.It includes several book ideas that could be of interest to your son.

I am very sad and have spent most of the evening searching for it.

http://www.asd-forum.org.uk/forum/Index.php?/topic/22945-book-recommendations/page__p__274845__hl__information__fromsearch__1#entry274845

Karen.

Edited August 18, 2010 by Karen A

[baddad]

It was never a 'telling' thing here... from the day he was dx'd it was just all part of everyday conversation - if something came up where it was a factor it was mentioned and discussed openly, be that at home, at school, socially, whatever.

The idea of there being a 'good age' seems odd to me - can't think where your doctor got that idea from! Clumsy analogy coming up - I do hate comparing autism with physical disabilities but sometimes it helps. If you had a child with a physical disability - say blindeness or deafness - would the doctor suggest you wait until the 'right time' to tell them that most people can see or hear? It's just a 'fact of life' and like the other 'facts of life' the more open, honest and straighforward the telling the less likely a kid is to get confused or hung up over any of it.

Some parents, I know, say 'he/she is in a world of his/her own - doesn't realise he/she is different'... In that case there's two ways of looking at it, I guess - one where the child becomes aware of 'difference' and is then told why, or another where autism becomes a natural part of that internal world and they grow into awareness of both things at the same time. Personally, I think the latter is probably the gentler route to self-awareness. If your son is asking questions, then by definition not telling him suggests there's something to hide - and that's always going to seem like a negative even if the reasons for hiding seem like good ones at the time...

Rather than doing a 'time for a talk' id just say the next time he asks why he feels different 'well you are "different"'. You can then have a casual chat about everyone being individual, and say that in his case part of that individuality is that he is autistic. After that you can just go with the flow - whatever questions he asks just answer them. If you get lots of questions ask him if he'd like to do some reading with you on the subject, but if he's happy at this stage just to discuss things in a more general context that's all good too.

 

very best with it, whatever approach you decide on.

 

L&P

 

BD

[Jules71]

This is one of the questions I was going to ask My son is 10 years old and we heard we had the diagnosis for AS on Monday. We haven't told him yet, we do intend to, just unsure how to go about it. Like others have said he is becoming aware that he is different, he gets very upset sometimes about it and we are hoping this will help him understand things better. Anyway there is some great advice in this thread and I'm going to have a look for that book now.

[baddad]

This is one of the questions I was going to ask My son is 10 years old and we heard we had the diagnosis for AS on Monday. We haven't told him yet, we do intend to, just unsure how to go about it. Like others have said he is becoming aware that he is different, he gets very upset sometimes about it and we are hoping this will help him understand things better. Anyway there is some great advice in this thread and I'm going to have a look for that book now.

 

Hi Jules - I think you've already got your starting point from the dx you received on Monday You can just say, quite casually at some point, 'oh you know when we went for that meeting at xxxxxx (insert name of relevant clinic/hospital/service)- we'll we've just got the letter telling us what they thought...' You can then discuss in more detail if he seems to want it or just leave it hanging for him to do some thinking on his own if that seems to be what he wants to do. You could also reassure him by saying something like, 'We thought that's what they might say, but didn't want to jump the gun by guessing' - which would explain why you haven't mentioned it before while suggesting that, from your POV, it's 'no biggy'. Of course, from a parents POV it often is a 'biggy' even if it was what you were expecting, and that's perfectly natural and understandable too, so don't beat yourself up if at the mo you find you're telling a few 'white lies' while you get your own heads round it.

 

Hope that's helpful, and hope all goes well.

 

L&P

 

BD

[Sally44]

As BD says, I just talked through things with my son as they arose.

I already knew he had sensory issues from a baby and that runs in the family (I also have hyper tactile, smell, taste and touch), so as he reacted to things (so did I) and we talked it through together.

That helped because the reaction to sensory stimulus is related to how you experience it. So he did not understand how his peers tolerated things that he could not. So it helped for him to know that his experience was different and how to cope with things. (It is also important to know that the reaction to sensory stimulus can vary from day to day.)

So from the time he got a diagnosis of an ASD we have talked things through. Just go into as much depth as the child needs to answer the question. If they want to know more they may ask more. Or ask "has that answered your question or do you want to ask me something else?"

Sometimes I do need to ask a direct question after something has happened like "do you know why xxx makes you feel upset/angry/mad etc). That may lead onto another conversation.

I find talking in the morning better before the day starts.

My son has always known he was different and stared saying this from about the age of six upwards. Understanding some of the reasons why helps him not to be so judgemental on himself. However he does sometimes still call himself stupid, rubbish or a loser at the time something happens because emotions tend to run high and his performance is always well below what he expects and wants to be capable of. So there is alot of frustration and low self esteem issues too.

We are working on being "a good loser" at the moment. We are playing chess together and he can now beat me! But he throws a wobbly if he loses. So I have to keep reminding him how I react when I lose, and that if he wants to play chess with other people he will sometimes lose and if he loses and gets upset then other people may not want to play with him again because it is supposed to be enjoyable! These are hard lessons to learn, but have to be taught even if the child does not fully take it on board for years (or ever!). It has to be repeated over and over.

And remember that when you are talking about differences, talk too about the things he is good at. And identify other people and what they are good or bad at - so that he sees that it isn't just him that is poor at sports etc.

Just try to be very matter of fact about things.

[Sally44]

The only thing I would add is it is harder if the child does not want to accept that they are different. Some children know they are different and the explanation comes as a relief. For others they are struggling to appear the same as everyone else and to be told "you will never be the same" is impossible for them to accept. That does make it harder. My son finds it hard to accept any kind of help because he feels that proves he is different and that he is not as good as other kids. Again this is a lesson that has to be learnt. Everyone needs to accept help and be taught certain things. So I try to point it out when others ask for or receive help or are taught something.

But I know many children find this aspect hard to deal with especially in a school environment when they are older they may not want the TA to be seen to help them etc. So help has to be given in a form and at a time that is helpful and acceptable for the child.

[Jules71]

Thank you, you have both been really, really helpful. He does know we have been trying to get help for him so that should help matters when we tell him.

 

I think we both need to get our heads round it before we talk to him. We were expecting the diagnosis from the things the lady at CAHMS said during the whole process but it's still hard to take it all in.....

[Rosie M]

Thank you all for taking the time to reply. Have ordered the book and am now more confident in having the conversation. Thanks again.

[Jules71]

I also ordered Can I tell you about Asperger syndrome and also The Bluebottle Mystery, they arrived this week and I've read them both, they are great!!