How do I explain to my son that he may have Aspergers

[kathkin99]

Hi

I am new on here my son started school in September and to cut a long story short he was referred after about three weeks, we have been to see the child pead who said he has flavours of Autism and she has basically referred him on to a specialised centre for a more through referral I suppose, the appointment will take two or three months to come through.

He was 5 in September and at the moment I have managed to skirt around the issue but how did you all put it to your children that they may have an ASD I really don't know how to put it to him I don't won't to worry him.

He has full speech and basically I think I am still in shock really and find it difficult talking teacher, pead about it all without getting upset which obviously makes it difficult to get my point across sometimes did anyone else here have this problem and does it get easier to talk about it without getting upset.

Thanks very much in advance for your help its great to be able to talk to people who understand some of my friends really don't understand.

Thanks

Kathy

[DAS999]

I have been told you can get books for children? maybe someone can name these as I can't remember the names read on hear (i think) once

[oracle]

Does you son asks any questions about himself? Do you think he feels that he is different? If the answer to these questions is yes then he is already looking for answers even at five years old. However you do not have a firm dx yet so I would hesitate at saying anything right now? Although you could start introducing things like the assessment onto the agenda to see what he is thinking about all of this?

 

I am a firm believer in telling our children at as young an age as possible and then they grow up with the dx and the knowledge that they will need to know about themselves. BUT the dynamics in every family is different and we all know our own children best. My eldest was 13 when diagnosed and it answered many of his questions. The youngest was 3 and has known from the off - but then he was diagnosed at the same time as the 13 year old and it was something we spent a great deal of time talking about because of this. It meant nothing to Matthew(youngest) until he was about five and then he started asking me questions. Not all children want to feel different (I know Matthew does not) and that is why I am not pleased that we got him used to the words as soon as we did. Matthew accepts his autism but he will not allow us to talk to anyone else about it - something David (eldest) does not mind at all. As I have said all kids are different.

 

I started by pointing out to Matthew that 'everyone' is different anyway. No two people are the same. I then used my eldest sons best friend as my example as he has bright red hair and that makes him different but he is also a brilliant lad and almost one of our family. I then went on to things closer to home like my Thyroid problems that I have but he does not. It sort of helped him to understand that not everyone else has autism but there are many others who do. Hope some of this is making sense?

 

Go with your gut and if he asks questions then try and be as truthful and as positive as you can be. That is really important we have no negative vibes in this house - well not while they are both awake.

 

Carole

[adamsmum]

I've not told K hes nearly 8 but i wont worry him Till he's diagnosed or asks me. I will start with a book when the time comes

[OPooh]

My son is 9 and is being assessed for the second time right now. He knows he feels different and believes everyone hates him, plus he can find school hard, and to understand what people are saying (speech and language type thing) - I've told him about aspergers and how he might have it - or a bit of it and that is WHY he has the troubles - not because of anything wrong with him. I've also told him that it might just be because he's really clever too - and that's what we are going to find out.

 

I guess it depends on why the assessment was picked up in the first place as to what I would say. But I do believe that whether my son is dx as aspergers or not he had a right to know what was going on.

 

Good luck and welcome to the forum.

[mum22boys]

I was very interested in this question because I am in the same position as you. My son is five and is being assessed. i haven't actually told him we think he has AS or that we think there is anything 'wrong'. He does however know something is not right. I never know what to say to him when we go for an appointment or an assessment and we have another this week. He already knows it is not right that he can't comminicate with the kids at school outside the school environment or cope emotionally with school. He has told me he needs to tell a doctor about the colours he sees floating round the room so he knows something isn't right. I won't be actually telling him anything until i have a firm diagnosis. I believe myself he has AS but even so i can't bring myself to tell him about the reason we see the doctors. i tell him it is to do with his temper tantrums - which of course is partly true.

Yes I believe it is probably different for each child. M will need an explanation soon but I don't know how to do it either.

 

Good Luck and welcome to the forum <'>

 

mum22boys

[spectrumlady]

Everybody is different, but I tend to agree with Carole in her approach. I think its best to cite examples forisntance that some people are tall and thin, some short and fat, some good at maths but not english, some good a sprots, some rubbish etc etc. i.e. everybody is good at something and has difficulties with other things. Point out what they are good at, and explain that everybody needs a little help and support with other things. Hope this helps.

 

<'>

[kathkin99]

Thanks very much for your replies certainly gave me some ideas on how to tell him if anyone remembers the names of the books please could you let me know. I am like you mum22boys for his first appointment I told him they were going to find out how to help him with his concentration ( you said temper tantrums)which is partly true he doesn't seem to know yet he is a little different from his peers.

Carole he hasn't started asking any questions at all yet and thanks for your ideas about how everyone is different I will certainly have a chat with him about that.

OPooh it must be heartbreaking to hear you son saying he thinks everyone hates him I thought Tom my son had got friends at school but when we went to a school disco he had no friends at all it was so sad but he didn't seem to notice yet but I am sure he will soon.

Thanks again everyone for all your help.

Kathy

[mum22boys]

I think also Kathkin you should remember that even though you notice he appears to have no friends he may actually be very happy like that. It has taken me a long time to adjust to this and it is mainly through people on this site reminding me when i have been distressed about him not wanting to join in or even go outside that he is happy. I think because we want to see them being the same as the others we assume they can only be happy if they are the same as their peers. This is just not true. M is happy being obsessed with his wires and playing by himself. he enjoys either missing birthday parties or taking a book and looking at that rather than joining in. He doesn't want a part in the school play even though all the other kids love it, i could go on and on.

Sometimes they like being in there own little world as strange as it seems for us.

 

Try not to worry too much.

 

mum22boys <'> <'>

[Steve_colour-se7en]

I have placed a link here thought it may be of interest http://www.phpbbplanet.com/forum/viewforum...autisticspectru

read the post for you steve, then the reply, it's how we dealt with it hope its of use.

 

 

Steve..

 

I think the boy means well but he is distinctly inclined to be inattentive......

Tutor of Winston Churchill to Lord Randolph Churchill,

Winston's father

[oracle]

I think when they are really young it is so very important to sell their autism to them, if sell if the right word, as something positive. I only hope that because of the fact the we do try to concentrate of their plus sides this will help with their self esteme?

 

Even now when Matthew goes for his 6 monthly check up I tell him that he sees his doctor because she loves to see how well he is doing and how clever he is. We are lucky that his Consultant also has this attitude with Matthew and so we have no problems in getting him to comply for her. We don;t exactley wear badges saying wear your autism with pride but what I don't want is my sons seeing their autism as something nasty.

 

My eldest never wanted to mix when he was a young child in fact it took him until he was 16 before he wanted a social life and only then the social life that he wanted. The youngest has always been a bot of a social butterfly but always manages to get it wrong. If I had to say which one is easier to live with then it's the son that never wanted friends by choice. It's very hard when they crave friendship but don't have the skills required to make it work.

 

Carole

[OPooh]

OPooh it must be heartbreaking to hear you son saying he thinks everyone hates him

 

 

Yes and it can be confusing because I'm not sure whether they are bullying him and need to move schools or whether it's just his perspective or a bit of both. Been told by loads of people at the school that he just has a different persepective on things but I'm not so sure. However, he does think that me and his dad hate him and want to really kill him (not just metaphorically) and that can be rather upsetting too.

 

Anyway good luck.

[loulou]

Hi,

 

I have recently been through this with my son.

 

I started another thread on this topic called "Appropriate time to tell child of diagnosis", but i'm no good at links!

 

My son is 7 (ADHD/ASD) and he has only recently realised that he is "different" from other children. Up until then, i hadn't told him of his diagnosis. He started getting upset and saying that his brain was "broken", so i decided to tell him.

 

I used advice given on this forum, and explained about everyone being different. I told him he had a very special brain, that thinks differently to others, but is very clever. He seemed to accept this ok.

 

If you look on the NAS website, you'll find a selection of books, although they are generally aimed at older children.

 

Personally, i think you should go with your instincts on this one. If your son is happy, and not really aware of his "differences", i wouldn't push it too much. I though about it long and hard, and decided that i didn't want my son to think that there was anyhthing "wrong" with him.

 

Loulou x

[Tally]

I only found out about Asperger's in adulthood, and I spent most of my childhood feeling like a freak (and being told my other kids that I was a freak). Knowing wouldn't have prevented the things that other kids said, but as an adult it has helped me to be less bothered by what other people think. Rather then believing I am stupid and/or have a mental illness or some kind of defect, I now realise that I think differently, cope with things differently, understand situations differently, and am actually better at some things than most people seem to be too. Different is not necessarly inferior. If I am happy, who cares what other people think - as long as I am not hurting other people.

 

What I'm trying to say is, if your child recognises that he is different from other children, it is (in my opinion anyway) important that they come to accept this difference, rather than thinking that they are inferior.

 

With regards to the assessments and appointments he will have to attend, Carole's idea about "he wants to see how clever you are" sounds great, or you could tell your son that they want to find out how to help him with the things that he finds to hard.

[Paula]

Jessica kingsley publications are a site you can find online that specialize in all sorts of books aimed at all aspects of autism,tourettes,downs syndrome ,adhd absolutley alsorts.

 

You can order online or teleephone an order through.Ive had loads of books from them so i can vouch for it.

 

 

My son is 12 this month hes AS.Hes only just realiseing hes different.We did the "selling " Autism to him.Weve always said hes special and stuff and pointed out all the stuff hes a bloomeing whizz at that us meare mortals arent.

 

He attends a special school and his stamented againe we say this is because hes far too much of a genius foir the normal teachers to teach.I know not every body will agree with this method but hes happy were happy so no harm done.Hes proud to be AS and uses the word when he talks about himself.

[kathkin99]

Thanks for all your replies you have certainly helped me decide when and how to tell him its great to be able to talk to like minded people that understand and to know I can come here any time and find out the best way for my son.

Look forward to speaking again.

Kathy.

[Bullet]

Hi . I am not going to be very good posting about this, but I will tell you off my own experiences.

I am thirty and for as long as I can remember I have known that I find a lot of things difficult. I am married to a wonderful man and have two gorgeous young lads (one of which I think has ASD) but I have been hiding so many things for so long. When I was child a lot of things about me (eg my very fast talking) made people suggest to my parents that I might need to be seen by a specialist. My mum refused as understanding wasn't as progressive then and she could see me being treated harshly.

The thing is, is that because I have never been diagnosed I an always left to wonder. Do I have Aspergers? Would it be counted as High Functioning ASD? Is it dyspraxia, or hyperlexia? Or do I come close to these things but don't quite fit onto them. It's the not knowing that is so hard.

I've not explained myself very well

[Tensing]

Henry was sat on the floor playing when the pead said he would refer him to the assessement team, he imediatly asked "Why", so the descision/task of explaining was taken out of my hands. In some ways it can be great to have a child who as he puts it "just has to know everything".

[Brook]

I dont think that my son would understand at the moment, although he is starting to get frustrated about

certain things and realises that other children dont do them, but I certainly will explain his ASD dx when

I feel that the time is right. I have been thinking about what I would say, but at this current time if I

told my son of his autism then I think he would not understand and would most likely say to anyone that

he met that 'I have autism' rather robotically without the understanding of what he was saying.IYKWIM.

 

I think it has to be geared to the individual's level of understanding and as we all know no two people are

the same. I think I would start with the situations that he is realising ie.. 'why' he screams and gets upset

at things that other children dont etc...

 

The day will certainly come and to be honest I think it will be a tough one for me to explain, but I definitely

want to explain it in terms of his level of understanding, but will try my best, which is all we can do.

 

I found this link to a book, but it is age 8-12 I think.

 

http://www.jkp.com/catalogue/book.php/isbn/9781843108153

 

Brook

[lindy-lou]

I think when they are really young it is so very important to sell their autism to them, if sell if the right word, as something positive. I only hope that because of the fact the we do try to concentrate of their plus sides this will help with their self esteme?

 

 

 

Carole

 

how young do you suggest doing this?indias only 3 so when should i make her aware?she doesnt start full time school til spetember so should i try and make her as aware as a 4 year old can be before she starts or is this to young for them to understand?

[oracle]

I can only tell you what I think is best Lindy but not what is best for you.

 

Matthew was dx'd aged 3 and the words autism,ASD and AS have been used in this house ever since. At three I think that this is enough. I never tried explaining anything to Matthew but we talked openly and freely about autism. Remember though that David aged 13 had just had his dx and he had millions of questions. Matthew was five before he asked me was he artistic too I said yes he asked no more so I said no more. Little by little he asks and I respond. But part of our HE is to teach Matthew about himself and that means about his autism. He understand so much about what makes him tic and what makes him toc (meaning he also knows that somethings are difficult for him)

 

I have a friend who did not tell her son that he had AS until he was 9 and he asked her right out what was wrong with him. He took the dx brilliantly. What he did not take well at all was that there were many other people, including his teachers (who he said are not even in our family who knew before he did) He felt his parents had lied to him for years and did not like that at all.

 

Again a personal belief but I child does not have to be able to understand to just hear the words circulating around them. They become words that are familiar to them and so when the words are explained they do not come as a shock.

 

ALL of the above is my own personal beliefs and how we did it but every family is different.

[Anneuk]

Although my dd only got her diagnosis age 10, she new she was always different and asked questions from a young age 4-5 about things,

 

We have always just told her that everyone is different, and that she sees things in a special way...

 

Ovr the years she has read more and more and is more confident in her difference, although as puberty approaches we are now having a few set backs as the gaps widen again....

 

As others have said, when children hear things all the time they just accept things and extras can be added as they develop and ask more questions.

 

Anne

[cmuir]

Hi

 

When attending hospital appointments for my 4.5 year old, he asked why he was there. I explained that I was concerned because he gets cross a lot (most obvious trait) and that we wanted to help him. He simply said 'oh okay then'. I added that he's a very special little boy who sometimes thinks about things a little bit differently. I guess I think it's best to keep it very simply and not tell them too much. I think for now that's all he needs to know until he's a bit older.

 

Best wishes.

 

Caroline.

[baileyj]

Gosh, we have never said anything to Max (5), he just wouldn't understand. He went through assessments and things when he was 3. I don't think he knows he's different, as he has no empathy with his peers, its just not something he thinks about. He's in mainstream school, and has had a full-time TA through playgroup, nursery & now Reception, to him it would be strange to not have help. His communication is very basic, non of this would go in at all.

 

Ive not thought about telling him, but reading some of you have 5 years olds and have, its surprised me a little. I think for me, I'll wait till I feel the time is right and he is able to understand.

 

Jo

[Stephanie]

My son is the same age as yours, he is unaware of his differences and is quite happy - loves school etc etc.

 

I feel he doesn't yet need to know about his ASD - what would he gain from knowing at this point? To be told that he is different at this age may have a negative impact.

 

I am going to wait until he is older and starts asking questions.