When and how should I tell DS he has Aspergers?

[Niecie]

My DS is just 7 and was dx with AS about 18mths. He also has dyspraxia which he sort of knows about as he is having ST and OT. Not sure I gave it a name but he knows he finds things harder than other children.

However, we have never sat him down and said he has AS, partly because for a while we didn't believe it and partly because he was too young to understand.

Now he has started the juniors I am wondering if we should tell him.

Any advice gratefully received.

Thanks.

Hi Niecie
I have a DS the same age, who was given a DX two years ago.
I haven't told him yet and I don't think he is ready to be told. He hasn't really noticed the differences and things like having a TA, he seems to just take for granted, without asking why he has her.
If he started to question me, I would be quite open with him. I have told his older brother, so it's not something we hide, but it just hasn't felt like the right time has come to talk to him about it yet.
I think you have to decide if you think your DS is mature enough to understand what he is being told and if knowing, at this stange of his life, would be of benifit to him or not.

Thanks isgrass - Like your DS he hasn't noticed any differences yet, it is just that he is starting Juniors now and the older children are less forgiving of somebody who is a bit different so I am wondering if I should say something now or wait until he runs into trouble which seems a bit unkind.

TBH I think if I told him he had AS he would get really stressed and start asking if he had to have an operation - his worst nightmare. I just wondered if I was doing him disservice by not talking to him about it. Also I am worried that if we do tell him when he is older that he will wonder why we never told him before.

I also don't think he could modify his behaviour that much yet to make any difference.

Maybe he never will run into trouble - they say he is very mild. But then I keep coming back to the bouncing and flapping and there is not much that can disguise that is there.

hi...i'll post on this later....we have a great book i bought aimed at explaining it to children....
i'll find its title etc!

My DS is 8 and has AS-he was dx when he was 6. We told him just before his 7th birthday, after much thought. I am glad we did-he is an anxious child and I was concerned that it would worry him, but it has not seemed to cause him undue anxiety. And it has helped explain his differences to him.
On the other hand one of my older DSs is 18 and has only received a dx of AS in the last year. He has had much more difficult coming to terms with it. I would definitely say tell them sooner rather than later as they grow up with the knowledge iyswim.

DS1 is 8 and has dx of HFA (dx'd when he was 3).

He's done very well in mainstream and we've never told him about his dx.

I worry that we should though.

So no help from me I'm afraid!

DS2 had his asd dx at age 3, we have always referred to him being autistic when people stare if he has a meltdown in public and he is aware he is autistc so there will be no need to explain later he already knows he is special. I expect he will want to know the ins and outs of it when he is older though. Bless he once said that 'tistic' made him naughty, I had to explain that 'tistic' made him my lovely little boy.

He is 4.5 now btw.

I told ds1 a few months ago when he was nearly 7. He'd been getting upset about things that he found difficult. Someone on here suggested the Kenneth Hall book so I read bits of it with him. Ds1 actually seemed relieved to find out that there was a reason why he has difficulties with some things. A lot will depend on the individual child though. I have no idea how ds2 (4yrs) will react when he's old enough to understand.

Thank you everybody for your replies.

Sounds like most of your told your dc. Part of me hopes that his troubles will never be bad enough for us to ever have to tell him.

On the other hand if we tell him when he starts hitting difficulties it is already too late - he will already feel different and isolated and that isn't good either.

Coppertop - is the book you mention aimed at young children, something DS could read himself?

Kenneth Hall wrote the book when he was about 9 or 10. It's fairly simple language and describes in small sections how KH feels about different things, eg in a section called "I like being alone" he writes:

"This is another unusual thing about me. I prefer being on my own a lot of the time and I hate crowds big time. I'm also not keen on strangers coming into my house. One thing which upsets me is the noise of the chatter when there are a lot of people together. If I am upset about something being alone helps."

It's a similar level of language throughout, if that helps you to tell whether your ds would be okay with it? It's just over 100 pages long and written so that you can either read it from cover to cover or just pick out paragraphs here and there that interest you. Dd has just 'helpfully' run off with it but the book is called something like "Aspergers, the universe and everything".

Thanks coppertop. The book sounds the right level. The problem I have is that DS has quite mild AS so that bit you copied doesn't sound like him at all. Is the book something to be read as a whole or can you chose bits that are relevant.

Does it have anything about stimming too?

not quite the same thing, but DS 7 knows he has ADHD and tonight through tears over writing homework he sat a back and absolutely sobbed his heart out and said he just wanted to be born again normal and not have ADHD. It broke my heart

First off, all our kids are different and will respond in different ways to being told their dx. Some will likely become anxious and worry about what it means. Many of you seem to have children who are oblivious to being different so it may be in those cases it's not necessary to share the dx. Others will benefit enormously from it.

My ds is almost 9, has had a dx of AS since he was 7 and a half, but had had three years of inconclusive assessments before we got to that stage. As a bright kid it was clear he was wondering why he was having all these hospital appointments when others weren't, and I felt it was important to explain to him. So he's probably one of the very few children who had AS explained to him before dx! I felt that was right for him because there were so obviously problems that needed to be dealt with in a particular way and it helped him to know that his mum and dad were trying to help him. He was visibly relieved when we told him there was a reason for his behaviour and the difficulties he was having, and he was reassured to know that we were doing our best for him.

Later, when we began on specific strategies to support him, it helped enormously that J understood the reasons why. With him 'on board' and knowing that he would ultimately benefit from checklists, timetables, token systems etc, he adapted to them and now (several years on!) takes them in his stride. In the last year we have worked intensively on managing his anger and he's come on in leaps and bounds, but I'm convinced he wouldn't have if he didn't know that such behaviour wasn't appropriate or that it was linked to his condition. He's not the same angry, confused and unhappy child he was a year ago.

The Kenneth Hall book (Asperger Syndrome, The Universe, and Everything) is lovely but it took me a while to read it to J because I felt it might upset him - he needed to develop his understanding to a certain level before the book would be of use to him. IIRC Kenneth went to a special school and was home-educated for a while - I didn't want J to assume that these things would happen to him as well, just because he had the same condition as Kenneth. A lovely book for understanding the dx from a child's point of view is Jude Welton's 'Can I Tell You About Asperger Syndrome'. I prefer it because it says things like "some people with AS don't like loud noises" etc but doesn't assume that everyone with AS is like that. It allows the child to decide for themselves how they're affected by the condition, which avoids the possibility of them assuming traits they don't have.

There are some excellent AS novels around too, where the main character has the condition and uses their autistic traits to help them solve crimes, mysteries etc (Kathy Hoopman has written a few).

I'm waffling now, and it's time to wake Beelzebub. Hope some of that helps.

I'll also add, in Clare Sainsbury's book Martian In the Playground, most of the people with AS quoted say they wish they'd known why they were different and had it explained to them. That was one of the deciding factors for me in telling J - I though it might limit his confusion if he had some idea about his condition.

But like I said, that's HIM, and it won't be like that for everyone. I guess you have to make your own choices based on how well you know your child.

Thanks KarenThirl. I really don't think that DS has noticed he is different yet apart for the physical stuff and I have explained the dyspraxia bit to him. AS is harder as it is less concrete - it is to do with who you are and what you feel rather than what you do which is harder for a 7 y.o. to understand. But as I say, I don't want to leave it until he is having problem as by then it is too late.

A later dx might have been better strangely, as he was too young to understand when he started the process - his first appointment was just before he was 4 and the dx came when he was 5.5. Seems like 7 or 8 is a good age to be told though.

I will have a looked at the book you suggested. Maybe get him to read it and ask him if he knows anybody like that. See where the conversation goes from there.

I am hoping that we can see an ed psych. this term, not having seen one before so maybe the right time will come up then.

Oh dear, it is really difficult to know what to do for the best.

i promised to name a book...but cannot find it at home- think ds's school have it!

but basically...i do encourage parents to tell a child about their diagnosis...but only if it helps reassure/explain their difficulties.

this will stop their self esteem suffering.

as they get older (and for me age6/7 is when the Aspergers can really cause hassles at school)...they don't get invited to parties...no friends call to play....they seem to always being told off....they can't do anything right....they don't feel they are like the other kids (maybe they are not interested in the latest games/fashion)

thats when you know its the right time to explain.

up till then they have been 'happy in their own little world'...but at some point they realise they are different.

to go through years (needlessly in my opinion)- feeling like a square peg in a round hole...growing to hate yourself...feeling usless, powerless etc...

to then find 'the reason'...later on in life.

I am talking from MY OWN EXPERIENCE here....if when i was younger, i'd been able to be raessured that there were reasons for how i felt- i may have been a happier child.

Thanks MissesF - at the moment ds is still oblivious to being different I think. He was only 7 in July and has just started Juniors so I think I expect him to start noticing soon.

The thing is whilst he has his 3 good friends I can't see him being worried about birthday party invites as they always invite him and so far he seems moderately interested in the latest games/films/tv. Enough to understand what others are on about.

His new teacher is very aware of his dx and has approached me twice in the playground after school already to ask if he normally does this or that as she doesn't want to tell him off if he can't help it. Maybe a bit too kind? Maybe the other children will start to notice he gets away with things. I don't know.

I think, from what you have all said that it might be too soon to tell him but I will watch out for the signs and maybe get one of those books to hand so that I can give it to him when the time comes.

Thanks to everybody for their replies.

Hi again Niecie
I was thinking about your dilemma and remembered a book I have called "Can I tell you about Asperger Syndrome?"
by Jude Welton. Published by Jessica Kingsley.
The forward says- This book has been written for boys and girls aged 7-15 to help them understand the difficulties faced by a child with AS. It tells them what AS is, what it feels like to have AS and how they can help. It is also a useful, friendly book to share with children who have recently had their own diagnosis of AS explained to them.

I picked it up when my DS was about 5 and I was having problems with him, but had no idea that he could have AS, I found that so much of it fitted my DS, that I had to buy it.
It is black and white with some line drawing and very simple to read.
I read it with my eldest DS when I explained to him about his brother and I will use it for my DS with AS when the time comes.

Opps didn't read all the post, so didn't realise someone had already said about this book

Don't worry isgrassgreener, I know it's a good one now.!

The more info the better.

Not sure if my post is relevant or not as my DD doesn't have Aspergers but has a genetic condition that causes overgrowth (she is tall for her age, but not that tall as luckily her dad and I are not on the tall side) and delayed development.

Because she has two elder siblings and we have always talked about their sister and her condition, we have never had to cross the bridge about talking to her about her condition because she knows she has it.

If someone mentions to her that she is tall for her age, she just turns round and says I have Sotos (although I am sure she doesn't actually know what Sotos is) - for her, it is the same as having blue eyes or blonde hair. It is just something that makes her who and what she is.

She is aware she is slightly different in that she goes to mainstream school but has 1-2-1 help but she is only 5 and any problems she may encounter may arise in years to come.

Having Sotos is who and what she is, although she doesn't actually know what it involves.

Luckily she only has it fairly mildly (if you can have it mildly as she has definitely got the chromosome mutation) but she goes to mainstream school, talks, walks, swims, is out of nappies etc. whereas other children with the same condition, at the same age, sometimes don't walk/talk/be out of nappies.

Because we have always talked about the condition in front of her (not in a bad way), I have never had to sit her down and explain to her, although if she was not aware, I am not sure that I would do this at the age she is now and I would probably wait until she was older.

isgrassgreener...THAT'S the book i was on about too!!!

(JK publishers are very good....i have 10 books by them!)