Telling my son

[LizK]

I know there have been posts about this before which I will search the archives for but wanted to ask for advice about my son's situation.

 

DS1 is nearly seven, at mainstream with fulltime 1-2-1 support. He is academically average but in other ways cognitively more immature. DS sees the world through different eyes, he's a bit of a Forrest Gump! Whole swathes of life pass over his head including the fact that he is any different to his friends.

 

We saw his Autism Outreach worker a couple of weeks ago who suggested that we might need to think about telling DS about his diagnosis at some point fairly soon. Part of this is prompted by the fact that his peers are asking more questions about why he is different and we feel if they understand more about why he does certain things it will help him with his fledgling friendships. However I feel very uneasy about talking to his peers about his autism without telling my son more about his autism himself first. Also AO feel that it is better for DS to learn about himself sooner rather than later in a low key way as he is starting to develop more self awareness. I don't want to have in the future a big moment where we sit down and tell him he is autistic, I would rather drip feed him info so it becomes part of everyday life

 

I feel quite unsettled about this, we are entering new territory. I don't even know how to introduce the concepts of autism and difference to him when he views himself the same as his peers. I asked him why he has his 1-2-1 LSA and he said 'because I need help'. When I asked him why his classmates don't have his LSA he said that they have the teacher. He has never asked why he spends lunchtimes inside or does different activities to his classmates at times, for my son it is just how things are.

 

So wondering how old your child was when you told them they were autistic?

 

How did you handle it? Any useful books or resources? Books ould ahve to be fairly simple, he is into books that a typical 5 year old would read.

 

Thanks

 

Liz x

[Diane]

My son was not diagnosed until he was 13. I did not feel it was something I could explain to him and give him the understanding he needed as I was at the time still learning and understanding and coming to terms with it all myself. We had a meeting with clinical psycholist who carried out the diagnosis. I went along with my son the CP explained very gently and carefully to our son that he had ASD and what it meant for him. He answered all his questions and did a couple fo follow up sessions. I left it a few weeks but I gave my son a book called can I tell you about Aspergers by Jude Welton we read this together and we talked about the bits of the book that he said was just like him.

 

Unfortunately he does not want anyone to know he has ASD which makes life difficult. He becomes very angry at the mere suggestion of it. So we are slowly and gently getting him used to the idea that certain people need to know and that it will make life easier for him if they do. He is so anxious about it and he thinks that his friends and teachers will treat him differently. He does not see that they already are doing this.

 

I do not think there is a right or wrong way to tell a child. I think you need to go with what is comfortable for you and your son and what you feel you can cope with. Sorry that is not much help.

 

I know how afraid I felt when the time came for us to tell our son. It was just the worst feeling.

 

You are in our thoughts just now. Good luck with it all.

[Suze]

Just replied to your other thread , just wanted to say that my boy got to a stage where he knew he was different, having more help in class , getting so upset about stuff, and his class mates telling him he was weird , We got to the stage (when he was 8) when he needed to know and I,m so glad we were open about it with him.We talk about stuff all the time as do his brother and sister and he is now 13 and very insightful into his ASD.He has begun to understand himself which I think is really important..........I feel its so important to discuss their condition/anxieties/problems etc with them as with out that how can we help. IYSWIM.

[Sooze2]

Its so hard isn't it. I can only tell you what I am feeling about my son at the moment. Ive rambled a bit!!

 

My son was diagnosed with ASD and ADHD last month, at our last meeting 2 weeks ago the consultant said that he needs to be told soon. I have thought this over and feel that he doesn't need to be told yet - he's 9 next month. He is feeling very confident and good about himself in all areas of his life for the past few weeks and school are happy with how he has settled in his new class etc. The school are great and doing a lot of work to ensure he is happy though so he is lucky.

 

I feel that telling him now will make him start thinking of himself as very different to his peers (which he has felt before but not at the moment) and because he feels that he is fitting in really well it would make him single himself out and move away from the group again.

 

I also know that he will say something along the lines of "I threw her off the trampoline because I have asd or adhd and I couldn't help it" he will manipulate every situation if he thinks he can get away with it so if I give him a get out of jail free card he will use it at every opportunity.

 

Autism Outreach came to school this morning and I had a chat with her about this and she was happy for him not to be told yet, he is feeling good about himself and is settled so now is not the right time. She said I will know when the time is right.

 

Personally I would start inviting his new freinds for tea and see how they interact and if they really do think your son is different and whether they see that difference as a good thing or not. DS's freinds accept his differences and they do make him quite an interesting freind to have and make him quite entertaining, for the moment a least. They get to set up the wooden train set so that it runs all over the house, they can't do that usually because theirs was given away when they were 5 and they tell me that they wished it wasn't because they still like playing with trains really. They get to make things out of wood using real saws at his little worshop, they talk about the inventions they are going to make when they get older and spend hours discussing who will do what. They ask to do Hama beads and learn that they are not just for girls etc etc the thing is you can introduce things to their freinds that they would never dream of doing and as long as you make it interesting they will leave your house feeling like your son is different but in such a great way. DS has boundless energy and can't turn his brain off at all ever so his freinds are never bored when they are with him, they don't get a chance to think about whether he is different or not because he doesn't allow then a chance to think about anything other than what is happening there and then!!

 

I know that it will change as they get older though and I think the parents will probably be the ones who point it out to their children rather than the kids noticing!

 

We do talk a lot about his thoughts and feelings about things and he is aware about being different but he feels there are a lot of possitives that go with it. I have bought books to read to him written for asd kids and I will get them out soon and see if the questions come and go from there. Everything is lead by my kids, if they ask I answer so I will go will the flow the same goes for everything including the "where do babies come from and how do they get in there" question

 

Not much help am I really but I thought I would add a few possitives to being different.

Edited September 22, 2008 by Sooze2

[single autie mum]

Its so hard isn't it. I can only tell you what I am feeling about my son at the moment. Ive rambled a bit!!

 

My son was diagnosed with ASD and ADHD last month, at our last meeting 2 weeks ago the consultant said that he needs to be told soon. I have thought this over and feel that he doesn't need to be told yet - he's 9 next month. He is feeling very confident and good about himself in all areas of his life for the past few weeks and school are happy with how he has settled in his new class etc. The school are great and doing a lot of work to ensure he is happy though so he is lucky.

 

I feel that telling him now will make him start thinking of himself as very different to his peers (which he has felt before but not at the moment) and because he feels that he is fitting in really well it would make him single himself out and move away from the group again.

 

I also know that he will say something along the lines of "I threw her off the trampoline because I have asd or adhd and I couldn't help it" he will manipulate every situation if he thinks he can get away with it so if I give him a get out of jail free card he will use it at every opportunity.

 

Autism Outreach came to school this morning and I had a chat with her about this and she was happy for him not to be told yet, he is feeling good about himself and is settled so now is not the right time. She said I will know when the time is right.

 

Personally I would start inviting his new freinds for tea and see how they interact and if they really do think your son is different and whether they see that difference as a good thing or not. DS's freinds accept his differences and they do make him quite an interesting freind to have and make him quite entertaining, for the moment a least. They get to set up the wooden train set so that it runs all over the house, they can't do that usually because theirs was given away when they were 5 and they tell me that they wished it wasn't because they still like playing with trains really. They get to make things out of wood using real saws at his little worshop, they talk about the inventions they are going to make when they get older and spend hours discussing who will do what. They ask to do Hama beads and learn that they are not just for girls etc etc the thing is you can introduce things to their freinds that they would never dream of doing and as long as you make it interesting they will leave your house feeling like your son is different but in such a great way. DS has boundless energy and can't turn his brain off at all ever so his freinds are never bored when they are with him, they don't get a chance to think about whether he is different or not because he doesn't allow then a chance to think about anything other than what is happening there and then!!

 

I know that it will change as they get older though and I think the parents will probably be the ones who point it out to their children rather than the kids noticing!

 

We do talk a lot about his thoughts and feelings about things and he is aware about being different but he feels there are a lot of possitives that go with it. I have bought books to read to him written for asd kids and I will get them out soon and see if the questions come and go from there. Everything is lead by my kids, if they ask I answer so I will go will the flow the same goes for everything including the "where do babies come from and how do they get in there" question

 

Not much help am I really but I thought I would add a few possitives to being different.

what a lovely positive message great to hear he has friends who accept him for who he is thats fantastic my son's been in autistic unit since 4years old and about 3 years ago when he was 8 he asked me why my friends children were in the mainstream and he could see them in their yard and asked me why he was in a seperate yard class to them i told him he was special and that he had something called autism and it just made him act in in a bit different way and it just made up who he was a lovely little boy i ve slowly told him bits as hes got older

[dogfish]

I am planning on telling my boy soon. He doesn't have the social awareness at the moment to perceive himself as different though. He tells everyone he has special needs and doesn't really care what people think. I am wary of giving him a label to hang all his problems on but i also don't want to drop it on him later. It is a difficult decision. Good luck.

[jlp]

I started mentioning things to my son for quite a while without mentioning the actual diagnosis.

 

During various conversations I'd drip feed things like how he had special ears that didn't like loud noises, and how his brain worked a bit differently etc - all very casual and part of everyday conversations. If he had questions I'd answer them honestly.

 

When he was 7 he asked me what I was reading and I said it was a book about Aspergers Syndrome and he asked if he had AS and I said yes.

 

We've always answered any questions but never had a 'big' chat about it.

[Diane]

I am wary of giving him a label to hang all his problems on but i also don't want to drop it on him later. It is a difficult decision. Good luck.[/b][/color]

 

 

I had this same concern about my son knowing and the teachers at school said he would do this.

 

Although my son is aware that he is socially different he has never used his ASD as an excuse for his behaviour or problems. I lie there was one occassion when a teacher repeatedly asked him to look at him when he was talking. To which my son replied 'I can't because it is difficult for me to look at people when I am having a conversation with them.I have aspergers!' the teacher then said he knew this. I won't go into the detail of what followed. It does not belong on this thread.

 

I think there is never a right time and it will always be a difficult conversation to have as you do not know how they will respond and you do not want to cause upset. It is a horrible feeling I will never forget how I felt and I will always wish that it never had to be done. Although my son is struggling now with accepting his diagnosis (some 18mths down the line) I think it has given him an inner peace that he did not have before.

 

So for all you guys out there having to go through this <'> >< <'> >< <'>