Is your child aware?

[badonkadonk]

Hiya everyone,

 

I've never started a thread before, but I have a funny churning feeling in my stomach so I know if I don't get this out it's going to stay with me all through the night.

 

I've mentioned before that my mom is a primary school teacher. This year she is teaching two children who are both on the Autistic Spectrum. One child is definate AS, the other is higher up the scale towards the classic Autism end of the spectrum. I like to check how they are doing and I help my mom with her work sometimes, stapling in books that sort of thing. Anyway I don't know how it came about but we were talking about the children and she said something like "well ***** doesn't know that they have an asd, even though the parent is quite aware of their child's diagnosis". The other child is aware apparently that they sometimes think and act differently to other people, but might not be aware of the name of his "condition".

 

At that point my jaw hit the floor. These aren't kids in the reception class either, they are 10 years old, year 6. I actually got quite upset and insistent that these kids need to know and they need to know asap. My mom replied with "well, ten's a bit young maybe?".

 

It got me thinking, how many other parents haven't told their children? Is there anyone on the board who hasn't told their kids?

 

Maybe you think I will have a go now I've said already about them needing to know, but I won't. I'm not going to tell you what to do, I'm only going to give my advice and suggest that you read it and try and take it into consideration.

 

In my own opinion, they need to know. Knowledge is power. Knowledge is key. Until they know who they are and what their ASD is they will not begin to understand themselves, why they are "different" to other people and learn how to properly and appropriately manage to live their lives effectively as a person with an ASD. It doesn't all have to be bad news, there is no shame in being Autistic. In fact, the positives for me far outweigh the negatives. So I don't like talking to people a great deal, so what! The fact that I don't enjoy it means I'm not bothered. If I enjoyed talking to people but didn't know how to then I can understand where the problems can arise from. But approched positively, people with ASDs can make progress in this area if they really want to try and understand how it all works, there are people out there who have done it.

 

Far better I insist that you deal with things and know what you're dealing with rather than spend life confused and unaware that there is an answer out there. By not telling your kids now you will only have to tell them in the future and what will you say when they turn around and yell "why didn't you tell me?". Yes it's going to cause things to change and yes there may be some upset, but again, this has to be dealt with at some point, it's never going to get any easier to find out. The earlier they come to terms with it the longer they have to have a go at making a positive out of it. It's insane to me that anyone would think differently.

 

I only got diagnosed last December, I'm now 23 years old. There are a lot of people out there like me and I bet they all say the same, I wish I had known sooner. I've had good days and bad days since the diagnosis, it's taken a good few months but I'm at peace with it now and actually wouldn't change it for the world. I like my intelligence, I like my quirky thinking. I'm glad I don't waste my time talking about lipstick and what so and so is up to. I like my obsessions, of course I do, I wouldn't get obsessed else. But I've had my bad days too, the "why me" days, the "it's never going to get any easier being around people is it" days. But the more I understand and get to know myself, the better I am at coping with it. I can sometimes make it round a supermarket now without having a super meltdown. I can go out of a night time and know that my boyfriend is there for me whatever might make me upset and we can deal with it and get through it and the night isn't cut short by me running away from a situation. My family are very, very slowly learning to accept me and stop trying to change who I am and are in some cases slowly adapting to me. My sister has learnt this week that I don't start shouting about "taking me into account" when I go in the bathroom if she only takes her hair out of the plughole when she finishes showering and makes sure her boyfriend puts the toilet seat down. Insignificant things to most people, major, major stress factors for me. But slowly she's learning.

 

I can't quite get it all out what I want to say as my brain is going 200 miles an hour, but know that I feel really strongly about this. You're not sitting them down and saying "hey, there's something wrong with you, you're never going to be able to do this and you're never going to be able to do that and you're never going to walk down the path of life the same as anyone else." No, instead you're saying "you know what, there is a reason, it's called Autism, this is what some people might think causes it. Yes, you're going to have problems understanding jokes and being in public and doing a lot of jobs and yes you're facing a rather ignorant world out there. But you're also going to be able to do a lot of things most people aren't and you're different to everyone else, how cool is that. You're you and while you might not walk down the same path as most people, there's another path with hundreds and millions of people just like you walking down it."

 

I'm not saying it's going to be all happy days, I can't speak for those with children with ASDs more towards the classic Autism end of the Spectrum. You can only adapt it to their strengths I guess and take little consolation in the fact that they will probably never know that they are different to anyone else. I don't know, I don't want to go there and offend people. I don't know how much people with Autism are aware so...I'm talking about kids who are aware of themselves, who are intelligent enough that they will figure it out eventually anyway. Or at least know they are different.

 

So I might never understand Paddy and Murphy jokes....I can do Sudoku puzzles in under a minute. I'll take that trade anyday. You gotta find the positives and work together and never stop learning and trying to understand. Knowledge is power. Knowledge is key.

 

Badonkadonk

xxx

 

Btw, in terms of my mom. I have urged her to talk to the parent outside of the school gates not as a teacher but as an acquaintance being a friend. I have told her that the kids should be aware that they are not the only ones in that classroom who have an ASD or sometimes feel/act differently to others. I've told her that even if they don't become good friends, they will at least have a confidante in each other and if they go to the same high school their lives might just be that little less lonely and happier.

[lil_me]

My son (7) knows the name of his condition as he's picked it up in conversations. We have tried to explain some ways his condition effects him, but he doesn't seem to understand properly, currently looking for books to help explain it to him as he notices the differences now more than ever. I do believe he should know, it's just how best to explain it to him.

[kinky j]

hi badonkadonk,

 

i have to say, i totally agree with you, my son's only 3 and he's aware he has an asd. i've never voiced it as a negative or told him it means he can't do stuff, though i've never voiced it as a positive either i must admit, i've mearly given it as an explaination to some of the things he does. as he's still so young i don't want him to think he's got he's got something wrong with him or that he's got some kind of one up on people because either way that would just cause trouble as he gets older.

 

i try to express it as just another part of what makes him him, like i have blonde hair or his father wears glasses.......c has an asd just part of life.

 

i'm not sure if i've explained that very well?

 

hope you get what i mean.

 

kj

[Brook]

Hi,

 

my son is nearly eight dx ASD, and although he is becoming aware of finding situations etc..

difficult, I know that he would not understand right now, I will sit him down and explain it when he

is older but more to the point when I think he is ready.

If I was to tell him now at his level of understanding he would probably walk up to people and say

"hello I'm autistic" without the real understanding of what autism is.

 

I think this very much depends on the understanding of a child and I agree that they should be told,

but I strongly feel that it has to be the right time otherwise I fear that it could work the other way,

and if he only understands a bit of what you tell him then this may end up confusing him (am speaking

for my son here!) and a build up to more problems.

 

Also I would have to think very hard how to approach it so to avoid causing him more stress.

 

But my son will definitely be told when the time is right.

 

Brook

[oracle]

I 100% agree with you badonkadonk and I have just asked my 9 year old son Matthew how he would feel if I had waited to tell him that he is autistic until now. Matthew was 3 when we got the diagnosis with HFA and he has been aware of this for as long as we have. Matthew (yes OK he should be in bed but isn't) says he would not be happy if I had kept it from him. OK so at 3 how much did he understand? Very little to be honest with you but him understanding was not the point, the point was we were not hiding anything from him because I never want him to feel that he has something that needs to be hidden Matthew has grown up with his diagnosis and we have learnt together. Now aged 9 he has a pretty good understanding of what makes him tic. How can we expect our children to understand others while they do not understand themselves?

 

I actually have two sons with ASD and my eldest now 19 was not diagnosed until he was 13. Although I knew that David needed answers as he was asking so many questions himself, not only that he was working his way through a medical dictionary, I did worry about how he would take it. To me it was no different than waiting to tell a 13 year old that they had been adopted - why keep it a secret? For David it was the begining of a journey of acceptance about who he was and what he was. He like you does not feel any guilt over the way he feels and acts Why should he? David tells me he always knew that he was different and carried that feeling around with him from being 4 years old Now he is happy in his skin most of the time although he does have some bad times.

 

Matthew is still learning but he can now tell me when I am stressed and why and he is usually correct so maybe he will make a good psycologist or shrink I don't really care so long as he knows that who ever or whatever Matthew turn out to be will be just fine with us

 

Oracle

[bramblebrae]

Hi, on the advice of the autism outreach teacher I told Stephen(now 7) when he was almost 6. I got a little book written for explaining HFA or aspergers to a child with HFA or AS. He has read it several times we've discussed it a little. He dosen't think he is different though and has on a couple of occasions told people he has an ASD and whilst there was nothing wrong with him saying so but no reason to either - it made me feel he was trying to justify his actions or excuse them when really I don't feel he should have to. I'm glad for my sake he knows about it but I am not sure it was best for him or not I think he does still find it really confusing because his view of the world is we are all alike I do think long term it is better as it won't come as a shock later when things are at a more difficult point perhaps which would then have maybe added to his stress at that point. He has voiced concerns over his future but says it isn't because he has an ASD.

Overall I do feel he deserves to know and long term it will help him to know about it. I think now I need to expand on what he understands of it but I don't want to frighten him about any aspects of it so will have to be very careful as I just realised how little I understand of the way he thinks. I just discovered after we watching the movie 'eight below' that he didn't understand why we eat food at all. I told him the dogs were starving cause they had no food and would die if they didn't find some and he was really shocked, so I explained about needing water too and again he questioned it. It's just another thing I presumed at this age he would just know. We have alot of food conversations too as he is very selective about it and I really can't believe we've never discussed this very basic but most important point. Ahh how little I understand I need to stop presuming anything and get back to basics with him!!

 

take care

Lorraine

[carrieq]

We have told ds too, much to the distain of his Head Teacher, she believes he will now use it as his stock answer as to why he is bad! Just shows how little she understands as he doesn't have the means of thinking along those lines.

He doesn't really understand autism or ADHD but knows the names so hopefully when he is more able to take on the issues surrounding his dx he will be familiar with it.

He has a couple of books but I don't think he has linked the terms to himself yet, he is only 7!!

Carrie

[Bullet]

Ds1 has no awareness as far as I know, though it may be he knows he's different and is completely happy with that. He's got very limited perceived understanding, so it would be impossible to explain things to him at this stage.

For myself although I'm still not definite whether I have Aspergers my mum only told me she always knew I was different when I voiced my concerns about Tom to her. The sad irony is is that if Tom had not been ASD I would have spent my life probably thinking all my difficulties were down to me being me.

[pumpkinpie]

Like you I believe that knowledge is power.

I also think if you arent careful your kids could wnder what else you have lied to them about.

A few years ago my Dad walked out without saying goodbye. We had no inkling something was wrong and thought he had had a breakdown. My Mum had been ill and we thought it was his cry for help. We found out months later hed been having an affair for years with someone hed met on the internet.

I still love him but I could never trust him again!

Once you loose trust you cant get it back.

I personally thinnk if you hide it from your child you arent trusting them. I wouldnt harp on about it but I would get kids books about autism etc and makesure that its a poitive and not a negative word.

Its much harder to deal with things if you belive that those who are supposed to look out for you have been keeping things from you!

[KarenT]

We have told ds too, much to the distain of his Head Teacher, she believes he will now use it as his stock answer as to why he is bad! Just shows how little she understands as he doesn't have the means of thinking along those lines.

Snap. During J's school observation for the second opinion assessment in July, the class teacher actually told the psychiatrist that she thought he'd use a dx as an excuse for his behaviour, while at the same time saying that he isn't a management problem. So what behaviour, exactly, would he be using it as an excuse for ?!

 

This comes from us telling J he had 'AS or something similar' last year, having been given a provisional verbal dx which was later rescinded. J has on occasion said "It's because I have Aspergers", but I can't get it through to school that I've always told him and will continue to tell him that having Aspergers is a reason but not an excuse.

 

Like so many of you, I have always believed that J needs to know what his difficulties are so that he can work on finding ways around them and learn to self-manage. He's only seven and a lot of social stuff goes over his head, so atm he doesn't realise how much different he is from his peers, but those differences ARE there and if he's to cope as he gets older he does need to know, even if those difficulties have to be pointed out to him.

 

This brings me back to something about AS/ASD that's always bothered me - how can a person know they're different if they lack empathy for other people's experiences? That's the case with J - he can't see things from others' perspective and thinks he's got lots of friends and manages well socially. How can I teach him how to do it better without explaining to him where he's getting it wrong?

 

So yes, I'm all for our children being aware of having AS. The timing has to be right and it has to be done in a way that fits the child, but I agree that knowledge is power and there's far more to be gained from knowing than not.

 

Karen

x

[jb1964]

Hi,

 

My daughter's 13 and was only diagnosed ASD last year - we always thought she was different since she was born but she had loads of problems that we kept putting her difficulties down to. The Paed she was under since birth didn't suggest there was a problem either (she saw him at least every six months from birth until she was 11).

 

Although she kind of accepts it - and she has always felt she was different it doesn't make it any easier for her. She is petrified of other people finding out and finds it difficult to talk about it often shutting down at the sheer mention of anything to do with ASD - I printed off another thread that (Badonkadonk) had written - I thought it was a brilliant insight to aggression etc - she shut down as soon as I got it out of my bag.

 

She has read a few books on ASD which has helped her understanding but that is it (and it will only be on her terms when she feels like it). Only my parents, the school, my boss and a few very close friends have been told - and this only on the wishes of my daughter.

 

I agree that knowledge is everything and definitely my daughter asked all the questions of how long did we know etc etc (because she thought that she'd been lied to) - but as for whether a diagnosis has helped her on a personal level - is difficult to assess - yes she now knows why she feels different but isn't particularly leaning towards becoming more self aware or wants to learn strategies etc (perhaps this will come when she's older) - however, I do know that it has added more anxieties in as much that her 'secret' be kept.

 

Take care,

Jb

[lynyona]

k does know but i dont think he totally understands about it really or he maybe doesnt want to,i explained to him that he is different to people the same age as him and he just said " aw right" as he usually does if he doesnt understand something or a situation.

 

 

lynn

[board]

hello my dd6 was only dx in april so we are still comeing to terms with it but will tell her when the time is right all the best jill

[bid]

We always told my son, from when he was diagnosed with dyspraxia at 5 to AS and ADHD at 7.

 

Personally I think a child is far more frightened of the unknown than reality if it is explained apropriately.

 

I always think how frightening and bewildering it must be for a child to undergo endless assessments and maybe even hospital stays (as my son did) without knowing the reason. In my opinion I think they are far more likely to imagine they are seriously ill or something...

 

As they get older I think they need to have a reason for why they may struggle with some things.

 

As an adult who is struggling through the diagnosis process for myself, I know that for all of my life I have known I was 'different', and I internalised everything and thought it was because I was abnormal and dysfynctional This has had dreadfully far-reaching consequences, which I am having to deal with now

 

A child would be told if they had diabetes or epilepsy or cerebral palsy, etc, etc...

 

Bid

Edited September 20, 2006 by bid

[oxgirl]

My son is nearly 13 and does know he has AS and he accepts it, but there was a time, when he was younger, when I was very fearful of telling him. I thought the knowledge would somehow be the last straw for him and would destroy him. I agonized for quite a long time over how and when to do it.

 

In the end it happened quite naturally when he was really upset about something and I got cross with him and said something awful like, 'the other children in the class don't do this or that or whatever it was' and he said 'I'm not like the other children'. I was so shocked and mortified that I denied it and said, yes you are just the same as them, etc. to reassure him. It was only later, when he was stronger, that I felt he was really ready to know the truth, although obviously to some extent he did know something was different about him.

 

I do think it is a very individual decision though and that parents must feel confident that it is the right time for their child to take on this extra information about themselves.

 

~ Mel ~

[OPooh]

My son is 9 and he's not even got a dx but knows - and have given him books to read on it.

[smiley]

I explained it to my son as soon as he was diagnosed. I feel strongly that it is his body, his mind, and i felt, to not tell him would cause significant problems. But then, he was beginning to recognise he was different, and the dx answered a lot of questions for all of us (he was five at the time).

 

It's a part of life now - and it's nothing out of the ordinary for us to chat about AS. I've been very open with him - and have also put a 'positive spin' on AS. Yes, he has some difficulties, but he also has some very positive attributes (sp??!).

 

After saying all that ! I do think it's a personal choice, what has worked for one child - may make things harder for another....

[baddad]

Hi,

 

my son is nearly eight dx ASD, and although he is becoming aware of finding situations etc..

difficult, I know that he would not understand right now, I will sit him down and explain it when he

is older but more to the point when I think he is ready.

If I was to tell him now at his level of understanding he would probably walk up to people and say

"hello I'm autistic" without the real understanding of what autism is.

 

I think this very much depends on the understanding of a child and I agree that they should be told,

but I strongly feel that it has to be the right time otherwise I fear that it could work the other way,

and if he only understands a bit of what you tell him then this may end up confusing him (am speaking

for my son here!) and a build up to more problems.

 

Also I would have to think very hard how to approach it so to avoid causing him more stress.

 

But my son will definitely be told when the time is right.

 

Brook

 

 

Hi Brook -

Certainly not 'challenging' your POV - it's a very personal area, but my own opinion is that it's less 'negative' if the child grows into his diagnosis rather than being confronted with it when the 'why am I? Why do I?' questions get to big to ignore... I quoted Luke Jackson a few months ago on this subject - he was very angry at his mother for waiting to tell him, and expressed his distress at feeling 'ouside' and 'different', and how much worse that was for not having any sort of handle on the reasons why...

This is a very poor example, I know, but if you think of (i.e.) a kid with cerebral palsy they grow up with a complete knowledge of their condition as their understanding evolves, and accept their 'difference' as a natural part of who THEY are. One of the most fundamental problems expressed by people diagnosed later in life is that prior to that knowledge, prior to that dx, their understanding of self only included the idea of 'flawed' (because they didn't seem to fit in) rather than 'different' in a way that was equally valid and equally valued.

 

L&P

 

BD

[jools]

i've read this thread with great interest.

 

G was dx in june and as yet we haven't told him.

he has known for a couple of years about his dyspraxia.

he knows he has concentration issues (not officially dx add) so knows why he takes medication.

but i was unsure how to tell him about his asd (i feel bad about it now)

it was suggested by the outreach team that we 'drip feed' him info over the hols which we did.

 

i have books and i have left them lying around. i've also read the Blue Bottle Mystery to him.

a few weeks ago he did ask me why i kept getting books from the library about the same things and i told him that we thought he may have it and he just shrugged his shoulders and that was it.

 

after reading all your posts i've decided to tell him. will probably wait until the weekend but i will do it

[Flora]

Bill was just coming up for his 9th birthday when he was dx and I told him within a couple of weeks. He's an intelligent lad and I felt it would have been patronising to hold back from telling him. With Ben it's been necessary to take a different approach because of his language difficulties and phobias; he is aware that he's different but only in as much as he has dyslexia,probable dyscalculia and that his obsessions and phobias are something to do with autism. So while I don't hide anything from Ben I have taken a softly softly very drawn out and casual way of helping him understand.

 

Every child is different so the method of telling them should be tailored; but without a doubt I believe that not only do children have a right to know it's also absolutely necessary for many reasons, but ultimately to enable them to gain insight and acceptance of themselves.

 

Flora

[Kathryn]

I think it's essential to tell children when they are young, but we didn't have the choice. My daughter was only diagnosed at 15, and by that stage she had more or less diagnosed herself anyway after pretty much spending a year reasearching ASD herself.

 

I can only guess from the little she has told me since, how it feels to go through life thinking yourself "mad" or "stupid" because you feel different and can't do things that seem to come easily to others. At one point she even believed she had a brain tumour. Two years later, she is still coming to terms with everything.

 

I don't know what the right age is to tell children, but I think it should be well before the pressures of secondary school and puberty kick in, otherwise there are too many changes to deal with.

 

K x

[Frangipani]

I hate to admit that I totally ignored the Autism side of things as my son had ADHD as well and I found it easier to just say to him and people he had that. I found some people were kind and supportive and some rude and ignorant. It wasnt until my childs behaviour spiralled down at 12 the Paediatrician and I sat him down and talked about Aspergers, breaking it to him mildly. But at age 15 my sons problems again spiralled even more that the Paediatrician advised me this is no longer ADHD it is more Autism. I guess I was in denial. When my son turned 18 we are also looking at Fragile X now, so it really that easy to discuss things.

 

I talked to my son when he was 18 and he said he just wants to forget about it and not talk about it, be says I am not a label I am Bob.

 

I guess this is just another angle.

 

Fx

[LizC]

Hi Matthew is a aware he is different, he knows he has something called Aspergers syndrome but often gets it muddled up with asthma lol (he has that too) but then when he has done something he says he can't help it, it is his aspergers!

[Brook]

Hi Brook -

Certainly not 'challenging' your POV - it's a very personal area, but my own opinion is that it's less 'negative' if the child grows into his diagnosis rather than being confronted with it when the 'why am I? Why do I?' questions get to big to ignore... I quoted Luke Jackson a few months ago on this subject - he was very angry at his mother for waiting to tell him, and expressed his distress at feeling 'ouside' and 'different', and how much worse that was for not having any sort of handle on the reasons why...

This is a very poor example, I know, but if you think of (i.e.) a kid with cerebral palsy they grow up with a complete knowledge of their condition as their understanding evolves, and accept their 'difference' as a natural part of who THEY are. One of the most fundamental problems expressed by people diagnosed later in life is that prior to that knowledge, prior to that dx, their understanding of self only included the idea of 'flawed' (because they didn't seem to fit in) rather than 'different' in a way that was equally valid and equally valued.

 

L&P

 

BD

 

BD,

 

As I said, my son will definitely be told when the time is right, I see I'm in the minority here,

but I know my son and I know that it would make him very confused at this moment in time,

if I said to my son that he was 'different' he would obsess over it because he hasn't got the

understanding of receptive language to really grasp what I mean.

He has other issues going on at the moment and I certainly do not want to add to them!

Obviously some childrens level of understanding is much higher and they can work through

what they have been told, my son at this time wouldn't be able to work through it even with

all the help I could give him.

 

My son will be told when he is ready, and not just when I 'think' he is ready but when I 'know'

he would be able to take it on board and that he will be able to work through it rather than

it causing him alot of obsessing and confusion.

 

Brook

[Frangipani]

BD,

 

As I said, my son will definitely be told when the time is right, I see I'm in the minority here,

but I know my son and I know that it would make him very confused at this moment in time,

if I said to my son that he was 'different' he would obsess over it because he hasn't got the

understanding of receptive language to really grasp what I mean.

He has other issues going on at the moment and I certainly do not want to add to them!

Obviously some childrens level of understanding is much higher and they can work through

what they have been told, my son at this time wouldn't be able to work through it even with

all the help I could give him.

 

My son will be told when he is ready, and not just when I 'think' he is ready but when I 'know'

he would be able to take it on board and that he will be able to work through it rather than

it causing him alot of obsessing and confusion.

 

Brook

 

 

Brook <'> <'> I hear where you are coming from, some childrens conditions are so severe like my sons he wasnt able to grasp it either, thats why I went with one label at a time.

 

Perhaps when the time is right there maybe some good books in 'Resources' to help you through this process. I feared my son would take it really badly too. Poor dear struggled a lot just to try to be Bob.

 

Maybe Baddad is thinking along the lines gently gently as it may just ease their minds, why their life seems so difficult to grasp compared to others. <'>

 

A day at a time hun, <'> you need to be emotionally ready too. Perhaps reading some of those books will help you figure out in your mind just how, you could approach it.

 

Fxx

[oracle]

Personally I don't think that the understanding is important. If the words are floating in the air around them then nothing has been hidden. It does not have to be a sit down and this is what you have talk. Of course there are some things that I discuss in private and away from the boys but mostly we talk openly to one and other about their autism. But that is us and we are all different and that is what I have explained to both of mine. I actually used my poor eldest sons best mate as my example. He has bright red hair. That makes him different but we are all different. Never have I sold their ASD as a negative.

 

A friend of Matthew's was finally told by his parents last year he was 9 years old. Matthew had known about his friends autism and because I told him not to mentioned it to his friend he did not. Although the little lad took it well at first when he found out that everyone in the family, his teachers and even Matthew knew before him he was most unhappy.

 

Oracle

[Frangipani]

Again Oracle, if it is only Autism that is okay. But some kids have a whole range of problems on top of ASD and more labels, I think the mum and doctor know best in some cases that it isnt always best to tell them until a little bit older. Each case is different. Depending on the 'disability' as a whole.

 

If it were just Aspergers or Autism, their mums wouldn't hesitate, we have to be careful not to generalise, and respect that.

 

<'>

 

Fx.

[oracle]

My own two have lots more going on than just their ASD. For example do I chose not to tell David that he may well need a double cornea transplant in the future just because he already has autism, multiple allergies, some of which are very serious and acute asthma. Matthew also has Cyclical Vomiting Syndrome which can make him very ill needing hospital attention as well as eczema which is at the moment so raw that he is bleeding all over the place.

 

No one can ever tell anyone else what to do and nor should they try I can only say it from my own POV, so apologies if it sound like I am trying to tell anyone how to do things.

 

I guess I just have a BIG Mouth

 

Oracle

[Frangipani]

My own two have lots more going on than just their ASD. For example do I chose not to tell David that he may well need a double cornea transplant in the future just because he already has autism, multiple allergies, some of which are very serious and acute asthma. Matthew also has Cyclical Vomiting Syndrome which can make him very ill needing hospital attention as well as eczema which is at the moment so raw that he is bleeding all over the place.

 

No one can ever tell anyone else what to do and nor should they try I can only say it from my own POV, so apologies if it sound like I am trying to tell anyone how to do things.

 

I guess I just have a BIG Mouth

 

Oracle

 

For trying to help others at 1am in the morning I think you are a very caring and loving person, and no one thinks you said anything offensive. <'>

 

<'> <'>

 

Fxx Get some sleep woman <'>

[Bagpuss]

We havn't told our dd (5) that she has autism. She would have absolutely no understanding of what the heck we were talking about........she also does not know she has muscular dystrophy either.....again, because she would find it impossible to understand. We keep everything simple....we talk about her having wobbly legs etc.....having to use a wheelchair when her legs get wobbly......basic conversations along those lines. When we feel she has reached a level of understanding then she will be told. I would never keep it hidden, but I also wouldn't attempt to try and give her information I felt she was unable or incapable of dealing with or understanding.

 

Our eldest dd (8) was dx AS last month is a whole different scenario and she will most definately be told very soon. She is aware she has some difficulties and we feel it is wholly appropriate for her to be told, and that this can only help her now and in the future. We are in the process of looking into books etc to help us with this.

[noogsy]

hmmmm.my little boy was diagnosed at 6 and we told him everything from the start.he was seen by two specialists and both of them spoke to him and told him things.they would sit and ask louis if he had any questions.louis is now 9 and he has a huge amount of knowlege of asd and adhd.he tells people about what is wrong with him whether they ask or not...lol....because he wants people to be awere he may not understand or he may need to be told things clearer.also because louis is on medication and the medication worked(appart from his tic)so louis understand what a good day feels like when things are clearer for him.........so in lot of ways he knows what his asd is......love noogsy

[badonkadonk]

Hi everyone,

 

Thanks for all the responses! It's made me feel much better that a lot of you have already told/begun to tell your children. And it's positive that most of you are thinking of telling them at some point.

 

I also understand those people who are not quite ready to have the conversation just yet if the diagnosis has only just happened recently or if you feel the child is too young. And I agree with Oracle, I don't think you should feel pressured to do the whole big sit down serious conversation thing and worry about getting it all right first time. But I do feel that as a parent you should at least make sure that your own understanding of ASDs is as broadly informed as it could be. So I definately urge you to look at books and things like that so that the diagnosis is presented in the best possible way to your child. It's a big responsibility, but it's not like that's going to be the only conversation you ever have about it, at least I hope not!!! :-) Nobody's perfect and I think as long as you work with your child and take positive steps forward you can't really go wrong.

 

Kathryn I fully understand what your daughter went through, for years also I thought I had a brain tumour or that I was going insane. I used to scream at my parents to just send me away, put me in a mental hospital. I had constant headaches (and still do sometimes) because of the amount of stress I was under just trying to live my life so that just made my worries about brain tumours worse. I also couldn't agree more when you said that you think the children need to know before secondary school. This is why I'm so worried about the kids in my mom's class, they're in year 6 so they don't have a lot of time to prepare and I think if they knew that each other had an ASD as well it would make things easier. Also I find it's much easier to get swallowed up into the system at high school. Nobody knew about my Aspergers when I was at school, who knows why, but my behaviour was never even questioned. I was labelled as naughty from about 6 weeks in and the label stuck. I try not to look back at the last 23 years and think "if only"...but it's hard not to sometimes when I know how much better things could have been. Which is why I get so frightened up and upset when I think about it happening to another child.

 

Karen T - it sucks doesn't it, the whole bad behaviour thing with the headteacher. Before I knew I had AS I had tried already to go to uni a couple of times and study. The first time was at a uni in London (I just wanted to escape my life at home, but because me being undiagnosed was the problem, it followed me to London lol), I couldn't cope with being on my own, strangers yada yada yada. So I transferred to Wolverhampton but arrived late October and couldn't get settled, didn't know my way around that sort of thing. I've always wanted to help people and my mom, my elder brother and his fiance are all teachers so I thought teaching it is. In hindsight it's probably never going to be the career for me, but I somehow managed to do a 6 week teaching practice, though it damn near killed me and I suffered really badly with exhaustion and depresison once it was all over. But I had the same problem there, I taught two kids with AS (perhaps this is the reason I was meant to do the teaching practice as I was still undiagnosed?? lol), one was very sweet and daft as a brush, but school wasn't for them, they wanted to write stories about monkeys all day not read Macbeth. The other was a different story, very, very intelligent but very badly bullied and so they used to lash out etc. Unfortunately he was labelled as naughty first, AS second. I've had a little idea of how you could get the head to maybe understand better. I've already talked about this with my mom because I said why can't someone just go in there and tell the head all about Autism and make them understand. Apparently it would insult their intelligence or something!! Anyway, the NAS are doing a Sudokuthon thing to raise money. It's a real long shot, but maybe if you could persuade the school to get involved this could lead to a better understanding??? It's probably a stupid idea, but it's all I've got!

 

Ok, 2 more to go lol

 

JB - Perhaps you could leave a list lying around for your daughter of positive ASD role models. Even if it hasn't been confirmed, list them anyway. She might get a kick out of belonging to that club! I know I do!! Even if I'm not as intelligent or haven't achieved as much I still put myself in there lol. Also does she know about this site? It might help. There are also a lot of videos popping up on YouTube from kids who has Aspergers Syndrome. Though I would urge caution because it is YouTube and have a look at the videos first to find the good ones and then perhaps show them to your daughter. It's different to reading in that even if she shut down she would still be sat in front of the computer and would have to listen even if she refused to watch. I'm also here if she ever wants to ask any questions or just chat.

 

Jools, good luck this weekend if you do decide to tell your son. Maybe you could make a few colourful mind maps or charts or wall displays that explain his ASD? And get some cake in or something lol, I think a little spoiling wouldn't go a miss, especially if he plays "ball" with you guys. A big hug from me to you to pass onto your son. Hope things go well.

 

Ultimately though I think you are doing the right thing, what makes telling kids when they are young all the better is that even if they don't really understand what it is that they "have" (Aspergers, Asthma...it's all the same lol!!), what kids do have is an ability to think differently to adults anyway. They might ask the questions now that they might feel uneasy about asking in the future. Kids are less likely to feel silly about saying how little things bother them than adults are. Kids also have a little more optimism (hopefully) that a lot of us who have been exposed to the world for a lot longer than they have. (Is that too drab??)

 

I'm going to get my mom to point the parent of the child who doesn't know, in the direction on this website and specifically this thread. If it does nothing else it might get them thinking.

 

Thanks again for all your replies,

 

Badonkadonk

xxx

[Gardenia]

No I haven't told my son and i don't intend to yet and he is 8. I also haven't told his older brother what his younger brothers dx is. Ds2 knows he 'understands' things in a different way to others and for the time being that will be enough for him to handle.

 

Gardenia

[Kathrynh]

Really found your post interesting badonkadonk and your thoughts so well organised. I agree with much of what you say. As a mum of a child at the classic end of the spectrum it is true that I do take some consolation from the thought that he might never understand that he is different from other people and so it may never be a problem to him. He will miss out on the stresses of living a "normal" life and maybe thats not such a bad thing. If he ever does develop to the point where he will understand then I would definitely want him to know his diagnosis but I dont know if this will ever happen.

[lancelot]

We (or rather I, as DH prefers to avoid the subject) told C when he was 8 and starting to have appointments all over the place. This was about a year after diagnosis and probably three years after we knew, unofficially, what we were dealing with.

 

It's been good and bad. One downside has been that he has met a couple of other AS children, disliked them, and assumed that he is somehow less likeable by association. But that's outweighed by being able to talk to him much more openly now about why certain things affect him the way they do. It also meant that I could try to explain it to his younger brother, who (at 6) had already caught the words 'syndrome' and 'appointment' and turned out to have been thinking C was dangerously ill.

 

 

Anyway, so many professionals were starting to discuss it over his head as if he was deaf that I couldn't have avoided it. Did anyone else find this?

 

L xx

[oracle]

Anyway, so many professionals were starting to discuss it over his head as if he was deaf that I couldn't have avoided it. Did anyone else find this?

 

Yes we have had this and on occasion I have felt as if they were talking about my kids as if they are exhibit A and that makes me I now always ask for Matthew to be able to leave the room if the discussion is going to be about him rather than including him. My sons are autistic not stupid and I will not have them talked about as if they are not there.

 

Oracle

Edited September 21, 2006 by oracle

[Lucas]

Wish I had gotten my post in earlier but I'll do it now.

 

I was certainly one of the first few hundred in the UK to recieve the AS diagnosis as this was late 1994/95 and the only others would have been those who had direct contact with Lorna Wing and associates, I knew the word Asperger's Syndrome from the age of ten. But that is all it was, a word, I was given no information on what it meant or it was something to do with Autism and what that meant. For me that mean Asperger's Syndrome was what was 'wrong' with me and I didn't know what was my fault and what was AS's fault- it's understandable how it can be mistaken for a Schizoid personality or how that can develop through clumsy handling of information. For proberly did have a Schizoid personality for much of my teens because Autism was a living entity inside.

 

What I know now is that there is no such thing as 'Autistic behaviour', I've had that demonstrated to me by some very clever Autistic people(some who can be called low-functioning). The behaviour is only different because the things in the world that people respond to look different to me, but I still choose how I act unless the stress is overwhelming. So Autism does not by default excuse any bad behaviour and I find this is more a phantom invented by professionals who split the world into good and bad behaviour, but don't see reasonable and unreasonable in the behaviour: I think Autistic children are very reason-driven so absolutely every exhibited behaviour can be said to be because of Autism, while at the same time it's not 'Autistic behaviour'.

 

I think it's the same with ADHD, those who have that are not predisposed to bad behaviour but it's a self-fulfilling prophecy created by professionals that the reason for a child with ADHD to misbehave is ADHD. It does not question wether such a child is actually misbehaving(if they are copying someone else who has not been told to stop, they can't possibly be misbehaving from their view).

 

There is no excuse in saying that a child may use their diagnosis as an excuse for bad behaviour; when people say that, they are in fact telling children with DXs to do that and that in no way informs kids of the condition except to give them misconceptions. I work in a youth club where ADHD members don't know anything of their condition, just what they learn from being told they are to be feared because they will misbehave and they have no choice in that, they can't help misbehaving. It can't be good for their self-respect either.

 

So I think a person should know of their diagnosis as soon as they are able to understand it as judged by their parents and the information should be given in very large chunks: as I've explained before, Autistics learn by breaking things down themselves, not having others do it for them then building up the bigger picture bit by bit. The information should also be accurate, more so than a typical NAS leaflet(which I continue to be disappointed with, not only their LOW circulation but weak content too).

[jen]

Our son was diagnosed at 5 years. He knew he was different but he did not understand why. We told him he was AS when he was 7. This helped him to understand his condition and realise that we needed to address his differences.

 

Its very important to make it clear to the children that they may be difference but they can still achieve in the areas they are good at.

 

Our son was not ready to hear the diagnosis at 5 years because it would not of made a difference to him.

 

Jen