Tell him or not?

[Leesa]

Hi, I'm new to the forum. My 8 year old son was dx with aspergers 3 weeks ago. I had suspected this for some time and have always had the full support of his head teacher, if not always his actual teacher. My son also suffers from dyslexia. We caught this early on and felt that he needed an explaination as to why he was struggling in class, as he aware of his difficulties, and so explained dyslexia to him, ie special brain...special person. I now really need advice from people who have been here before me and have made the decision to explain asperger's to their child. My son's behaviour is very extreme and affects everyone in the family,but he is completely unaware that he is not "normal". His headteacher is very much of the view that he should be told for his own benefit and that of his 2 brothers ,what do you think? thanks.

[jewel]

Hi

My son was dx a few weeks ago too and have the same dilemma as you..i have tried telling him about aspergers but i feel he dosnt understand what i have tried to tell him? Does anyone know of any good books that we can let or children read about aspergers in a language they understand? I want my son to know about his condition. but not sure how to handle it!

good luck leesa i hope you get a more helpful reply soon lol

[Leesa]

Hi

My son was dx a few weeks ago too and have the same dilemma as you..i have tried telling him about aspergers but i feel he dosnt understand what i have tried to tell him? Does anyone know of any good books that we can let or children read about aspergers in a language they understand? I want my son to know about his condition. but not sure how to handle it!

good luck leesa i hope you get a more helpful reply soon lol

thanks, Its nice to know i'm not the only one. My son has a good understanding of how we are all different, eg he also wears glasses, and also my friend recently had an albino baby,the list goes on, but he at this point although aware of his dyslexia and inactual fact celebrates this does not realise that his behaviour is extreme and abnormal.

[Clare63]

Without sounding rude we have never told our son that he is not normal, but tried to explain that people with aspergers see things differently and expereince things differently to some other people, rather like the dyslexia I suppose. I think it is important to not make the child feel abnormal about their disabilities, but more to reconise that everyone is different.

 

I do sometimes get cross when people with ASD's are expected to adapt and change to fit in the world around them, yet little allowance is made to help them fit.

 

I know there are lots of good books out there and I am sure someone will pop along shortly with a recommendation.

 

Clare x x x

[sandyn]

Hi, my son was dx with ADHD when he was 6 and dx with High Funtioning Autism about 8 months later - he is 9 nxt week. At the time of his ADHD dx we felt we had to tell him as we decided to trial medication. He found the whole news extremely distressing and TBH it took a long time before he finally came to terms with it. Even now sometimes he gets upset and says "I wish I didn't have flipping ADHD". This is usually when he has been told off at school about something naughty that he has done. Oh they know how to work it when they want to!!!! LOL!!

 

For this reason, I havent sat down and told R about his HFA, but I haven't pushed it under the carpet either. I think I have taken a more casual approach this time. Oh hindsight is a wonderful thing!

 

I bought and read with him some of the books written by Kathy Hoopman - Blue Bottle Mysteries (I think thats the name!), which are fictional books about Aspergers. They are just right for the 8 to 9 year old range (although I thoroughly enjoyed reading it too!!!) I also bought a book called All Cats Have Aspergers- again by Kathy Hoopman. This was actually for my NT daughter (6) but R liked the photos of the cats!

 

One day, R, just asked me if he had Autism and I said "yes". I told him that ADHD and Autism all fall under the same umbrella. For my son, at this moment in time, I feel that he is not quite ready to cope with the fact that he has something else that is different from anyone else.

 

You know your child better than anyone else, but I think these fictional books are fantastic. I feel they explain and broach the subject of Aspergers in a gentle and non-clinical way, as some of the reference books do.

 

Good luck

 

Sandra

xxxx

[Leesa]

Without sounding rude we have never told our son that he is not normal, but tried to explain that people with aspergers see things differently and expereince things differently to some other people, rather like the dyslexia I suppose. I think it is important to not make the child feel abnormal about their disabilities, but more to reconise that everyone is different.

 

I do sometimes get cross when people with ASD's are expected to adapt and change to fit in the world around them, yet little allowance is made to help them fit.

 

I know there are lots of good books out there and I am sure someone will pop along shortly with a recommendation.

 

Clare x x x

I totally agree with you I have never told my son that he is not normal, and thats my point. he is for us normal, but abnormal to everyone else. he knows that he has a special brain and learns differently to his peers and he thinks that this is great with regard to his dyslexia. As far as the asprgers's goes he is not aware of his differences and thats why i need advice.

[Clare63]

Hopefully you will perhaps be able to get him to understand his aspergers in the same way as the dyslexia, though obviously I appreciate they are so very different.

 

Sorry I have not been much help, its like you say its everyone else, and that's how my son see's his aspergers he OK its just everyone else's problem.

 

Good luck

 

Clare x x x

[Leesa]

Hi, my son was dx with ADHD when he was 6 and dx with High Funtioning Autism about 8 months later - he is 9 nxt week. At the time of his ADHD dx we felt we had to tell him as we decided to trial medication. He found the whole news extremely distressing and TBH it took a long time before he finally came to terms with it. Even now sometimes he gets upset and says "I wish I didn't have flipping ADHD". This is usually when he has been told off at school about something naughty that he has done. Oh they know how to work it when they want to!!!! LOL!!

 

For this reason, I havent sat down and told R about his HFA, but I haven't pushed it under the carpet either. I think I have taken a more casual approach this time. Oh hindsight is a wonderful thing!

 

I bought and read with him some of the books written by Kathy Hoopman - Blue Bottle Mysteries (I think thats the name!), which are fictional books about Aspergers. They are just right for the 8 to 9 year old range (although I thoroughly enjoyed reading it too!!!) I also bought a book called All Cats Have Aspergers- again by Kathy Hoopman. This was actually for my NT daughter (6) but R liked the photos of the cats!

 

One day, R, just asked me if he had Autism and I said "yes". I told him that ADHD and Autism all fall under the same umbrella. For my son, at this moment in time, I feel that he is not quite ready to cope with the fact that he has something else that is different from anyone else.

 

You know your child better than anyone else, but I think these fictional books are fantastic. I feel they explain and broach the subject of Aspergers in a gentle and non-clinical way, as some of the reference books do.

 

 

Thankyou Sandra I will get those books, I also feel that K is not ready to deal with something else. He has a huge mountain to climb everyday. I don't know if adding to that would be of any help?

Good luck

 

Sandra

xxxx

[Cat]

I think the younger a child knows about themselves the better. That said I don't know that sitting them down and telling them all about themselves in one go is any use at all. If the child is having problems then I do think that it helps to be able to explain to your child why they might be feeling the way they are. Autism is a reason why someone does something in the way they do. Our youngest son was 3 when he was diagnosed followed by his older brothers diagnosis (he was 13) six week later. Because of this autism was a word that he grew up hearing. By talking openly to our eldest our youngest was hearing the words floating around him and so they have always been with him. He was 5 when he asked his first question about his autism and everytime he asks a question we make the time to answer him as truthfully was we can. We try to deal in positives and not negatives but there are times now when our son really needs to talk about the negatives wanting to know how hecan deal with himself .

 

 

I am a firm believer that self awareness is crucial in the development of any child and so is understanding what makes you tic and or explode at times is also something a child needs to understand.

 

When our youngest did ask me about his autism I told him that we are ALL of us different no two people are the same. My eldest none autistic son's best mate has bright red hair and so he too stands out in a crowd. He kindly allowed us to use himself as an example of being different but not in a bad. I myself have a goiter and that makes me different but not in a bad way. We said that he had a very clever brain that sometimes worked things out differently to other people and that was not a bad thing. We sold and I do mean sold and continue to sell being different as a good thing. My youngest and I are now quite famous for saying out loud 'who wants to be a sheep anyway'

 

Cat

[Zosmum]

When Z was dx'd, she was with us in the Dr's office so heard everything

When we got home we expained to her that it doesn't mean she's not normal or naughty or stupid the usual stuff they go thro'

We told her she was just like everyone else " eyes, 1 nose, 1 very loud mouth etc etc It just meant that this was why she struggled making freinds, coping in school and why she often did things differently to other people

Also told her the world would be so boring if everyone was the same

She seemed to accept this and hasn't wanted to be any different ever since

 

She does however use it to her advantage now and again ie-It's because of .........

[bikemad]

Same with ds he kinda knows cos he is so intensly interested in the appointments he notes everything in his head n is like a bleeding elephant with it and he has once or twice also said something is because of it but we wised up to that n he dont do it now.

[chris54]

Been thinking about how to tell my boy.

Then other day at doctors, was talking to doc about his ASD dx,"A" was there. Any way afterwords "A" asked me what I was talking about , I said. "You know when you went to see that lady who talked to you and played game and we have a video of it". "yes". "Well she has decided that you have Autism". "Oh". That was it and there I was thinking that this was a opportunity to tell him all about it. Not mentioned it since, so now he knows he has ASD but does not seem the slightest bit interested in what it means.

 

Perhaps he has put 2 and 2 together, trouble is maybe he will come up with 5.

[sammykin]

i too have this problem - my son is having therapy at the moment to deal with his extreme temper that is destroying our house!!!!! he is adament he does not want others to know. heres the difficulty - he is my step son, all three were removed from their mother last year under terribly traumatic situation. she is vindicative and mentally ill herself. she will use our diagnosis as a lever to go back to court again with!!! trouble is i would like him to know and his siblings but i also dont want them to tell their mum. they see her 6 weekly with supervised contact - any advice? sorry no spell check - it wont do it!!!

[joybed]

We were totally honest from day 1 with our son as i felt he needed to know as we had so many apointments where we all sat talking about him i though it wasn,t fair to not let him in on the secret. He accepted it well as we made it all sound very normal. As he is getting older however he is finding it difficult to deal with and as you said he feels that everyones elses way is wrong and he is right on everything this leads to so many discussions i get exhausted. On the whole though it is easier that he knows as we can talk openly about his condition. He aslo hates having autism and needs a great deal of attention to build up his self esteem which at the moment is rock bottom.

[Sooze2]

I am starting to think my son needs to know, he's feeling very frustrated and anxious at school because he know he needs a lot of help and isn't getting it. He knows I am trying to get him help and that I talk to the teacher about this. He feels very sad about the fact that he is on the bottom tables for school work even though he was boosted up last year and told he was very good at maths.

 

He knows he's different and its starting to upset him. I think it's time to get the books out to read together.

 

Its so hard isn't it. <'>

[ginger0705]

hi, i'm in a similar situation. we've just been told that our older son has HFA (though no official dx as such), our youngest has asd but has communication/language probs. concerned on how to explain that he has something with a similar name to little one but why he is so different from him.

 

we've been told by our psychologist not to tell him anything yet but we're not comfortable with keeping this from him when others know about his condition.

we're a very open family, he knows all about his brother's asd.

upsetting me that we're keeping secrets from him but we're not seeing pstch. for another month and we've just had this dropped on us and have been left with no support or advice on how to deal with things.

[Karen A]

Hi.We have Ben who is 10 and was Dx AS last Monday although those here know it had been on the cards for three years,

We told Ben the same day....partly we wanted to tell him before somone else did which is not unkown.

He was very pleased although he has been a bit up and down over the weekend as the news sinks in....as have we.

I think for Ben it will help him understand himself better and he will know why he finds some things more difficult.Karen.

[Karen A]

Hi

My son was dx a few weeks ago too and have the same dilemma as you..i have tried telling him about aspergers but i feel he dosnt understand what i have tried to tell him? Does anyone know of any good books that we can let or children read about aspergers in a language they understand? I want my son to know about his condition. but not sure how to handle it!

good luck leesa i hope you get a more helpful reply soon lol

 

Hi.I have two recomendations :-

'' Can I tell you about Asperger's Syndrome '' by Jude Welton.

''Freaks,Geeks and Asperger's Syndrome'' by Luke Jackson [more for age 11-teens].

[Leesa]

Thankyou for your replies. I guess the overriding view is to be honest about his differences.

[saffronsunflower]

Hello Leesa

 

Welcome , i am also new to the forum and in a similar position. I have a boy who will be 6 soon who just had his formal diagnosis in the summer.

Our decision was taken out of our hands as some children at school asked him if he had aspergers, his big bro had let it slip.

 

I was quite anxious at first believing him to be to young ( he is for most of the info) but i believe now it was the right thing,

we have tried to drip feed him little bits of info, focusing on the positives such as his sense of humour.

 

Many of the books are geared to a much older age group.. i did however find using a book called" all cats have aspergers" useful. This book is actually a humerous book aimed at an older reader and some of the comments i would never use, but it is a useful tool with a younger child to stimulate conversation with the child as it has funny photos of cats and draws parralels between an aspie behaviour and cats.

 

For any one who also has ADHD in the family, we also bought "all dogs have ADHD" for my older son and they compare notes and its helps them to have a giggle about each others quirks.

 

Best wishes

 

Nic

[Tally]

Hi Leesa,

 

I am an adult with AS. I was only diagnosed last year, but I has suspected for a couple of years before this and have recently found out that my parents had suspicions from a very young age. For me it has been an empowering realisation which has improved my self-confidence and enabled me to begin overcoming my problems with depression. I really wish I had known when I was growing up and I think it could have helped to prevent some of my issues now if I'd had a better understanding of my difficulties growing up. There will come a point when he will realise that he is not "normal," and it is better for him to understand his differences than assume that there is something "wrong" with him as I did. However, I also think it is important that you hold off until you have come to terms with it all and can see a positive way forward, as it's important that you present the news in as positive a way as possible, and you can't do that while you are feeling bad about it yourself.

 

Sammykin, I think your situation is different from most people's, and I would recommend you consult with a solicitor about how your stepson's mother might be able to use the information. She may actually have a legal right to access his medical information, and it might be better if she was offered the information, rather than found it out without your knowledge. I would have thought it would be even more important for your step-son to have a stable home life given his diagnosis. If the courts deem her incapable of parenting her son without supervision now, his diagnosis should not change that fact. If you seek legal advice now, at least you will understand exactly where you stand.

[sesley]

hi my son is 9 this year, and i must admit i don't know how to tell him, why he acts the way the way he does. I suppose it depends on what they understand and how much communication skills and understanding they have and how to tell them in a way they can understand. I find i don't readily offer why he does things in public to people i don't know. Why should he go around with a label ? no one else does.

[av16]

Hello, I would agree with others you need to tell him. We had the unfortunate experience of being in a meeting with psychologists with our son, a few months after he was dx at the age of 8, when they said they were from the autism team. He raised his eyebrows, then they asked how he'd been since his diagnosis of Asperger's- cue very raised eyebrows. They had the decency to turn bright red when we said we hadn't told him yet. I had to spend a long time afterwards reassuring him - he found comfort in a list of 'famous' people who alledgedly have/had AS.

I hope it goes well for you, DS is still in denial 3 years later, we give him lots of reassurance and emphasis how he has skills that he can use to his benefit that others may not have- persistance being one.

Good luck. <'>

[aspiesrule]

Hi,

 

Our son A, 10, has just always sort of known about his AS for as long as he can remember. He was only 5 when we had the clin psych test done which confirmed what I had felt for a couple of years, that he met all the criteria for AS. He was already starting to wonder why he behaved differently and got into trouble for trying to make other kids stick to rules etc. so I think he was glad of an explanation. We have always told him that his brain works in a slightly different way to lots of other children, but that doesn't necessarily make others better. We have praised his AS traits such as honesty and focus, and pushed the positives and told him we'll always help him deal with the negatives. He feels really positive about it and has even told me he is proud to have Asperger's sometimes as he has peers who lie and cheat and bully others and he doesn't think that's nice. He is very bright and we have told him that is common in AS, so he thinks that is great, too.

 

I think it has been very important for him to know and have an explanation, but as we know our kids are all different. Personally I think A needed an explanation for his differences to make sense of the world.

 

Have also got most of the books mentioned in this thread and agree they are all helpful.

"Can I tell you about Asperger's Syndrome '' by Jude Welton was especially useful when A wanted his teacher to explain his behaviour to his class.

 

Good Luck

 

Cheryl