Asperger's: to disclose or not to disclose? and if so, to whom? and how?and when?.....

[phoebus]

My 8 year old son has recently had his diagnosis of AS. He's borderline (on the scores) bright academically, but really struggles with groups and friendships at school. He hasn't been aggressive in the past, but unfortunately is just now starting to get more confrontational, (sadly, with the one and only NT child who has so far really tried to be his friend)....so seems hellbent on spoiling his own chances socially at the moment. He's worked out that he himself has special needs, but we haven't yet told him the terminology, or technically 'broken the news' to him....So, first of all, it would be so helpful to hear of some other's experience on the positives/negatives of any disclosure of his diagnosis, to a child of that age...eg: any lessons learnt? etc. (Any regrets or wishes about telling him/ not telling him/ telling him at wrong time etc? ISWIM).

Secondly I'm sure some other Mums and kids in his class must know/suspect that he isn't quite as other kids are....Do they need to know? If so, what exactly do they need to know? and might their 'knowing' just actually make things harder in practice for DS? eg. some kids might use it as a new way to tease or bully him in the playground. I can't make up my mind whether it's better to keep him in the dark for the time being, (as he is so young -of course he must know when he's more ready for it), or whether it will help him to know anyway sooner rather than later. His teacher and SENCO say don't tell him yet, but it makes life harder for me also with other Mums at the school gate wio can sense something isn't 'right' but I don't feel free to be open about it with them. Any wisdom gratefully received....

Hi phoebus just come back to say thank you for the welcome and for such great advice.

I was brave and started my own thread, Ben10 has found me and given me some great links and general support along with lots of lovely posters.

It all feels so, heavy. Although also a bit of relief that some one else has seen it in DD as well.

And in answer to your thread, I have told DD we are going to see the DR on Tuesday to talk about ways to help with her anger and other feelings and I have a feeling it will be a long road before even I know what her outcome is so I will have to get back to you on that one!

We told DS aged 5 straight after his dx. His response was, "Mum, everyone is different. Can I have a biscuit now?"! Gotta love 'em. Joking aside, I felt that it was important that he knew why he found some things quite difficult and other things very easy. Having that awareness has definitely helped him. Only last week he made the connection between talking for hours about TV schedules and his AS! Didn't stop him wittering on though :)

School know and I have told close family and the parents of his two NT friends but I sense that other mums have gathered that he is different. At the moment telling people on need to know basis is working and I do think that it should be ultimately up to him to tell others about his AS when he's older. We'll just have to see how it goes!

Hi again, good to read some more posts on this. Sorry, here goes with another long post....but it helps to put it all down....

I've found that hearing all your experiences has actually helped to crystallize my thinking on this quite considerably (very useful, as DH is actually all for completely covering up / not telling a soul - no, not even DS! - about the dx, which I find not at all helpful). I had a bit of a heart to heart chat with the Mum of DS's little 'friend/enemy' this morning, to try to help sort out their issues, and found that I had no real option but to let her know that DS has now been officially recognised as having a 'special need' (I'm still downplaying the actual terminology of it all, for the time being, for a number of reasons which I don't have time or place to go into here...) This situation compelled me to, really, for the sake of her poor young lad, who has been struggling hard to interact with DC and is feeling baffled and upset by what's been going on, and by what he's been getting back from DS recently. (And little wonder: hell, I've been going round the houses for the last 5 years doing pretty intensive research into AS, with DS's best interests at heart, and there are still times when even I struggle to get my head around it all - no surprise really that all the happily neurotypical community out there need some gentle introduction to/educating about AS - by us!) The other Mum was very sweet, and I think she needed to know from me what she must have already suspected, ie. that it isn't a level playing field for DS, and her young lad may have got unstuck trying to fix the unfixable with him, IYSWIM. I also told her that it's a physical (neurobiological) difference in the brain, hence an invisible disability which makes it so much harder for others to deal with.

All the helpful posters on here who have given me info about when you told your DCs their dx, etc, have further encouraged me (later today) finally to sit DS down and spend a little time talking to him about why and how he is different - as all this seems to me to be pointing towards a modest amount of disclosure to him right now - I'm now feeling he now NEEDS, and deserves, to have a bit more explanation, not just another lecture about acceptable behaviour. Basically elicited responses from him and focused a lot first on what his brain is so good at (academically better than most of his peers) and other positives which have recently come with his specal needs, eg. the red stamp on his hand at Legoland which helped us jump the queues there and have a much better time...) Then we talked about his main areas of struggle (friends, groups, playground, how to play with others). I explained that his 'special brain' does some things extra well and other things much less well, but that he could still learn most things, it would just be harder for him and take him longer. I explained that the current friendship crisis was not DC's 'fault' nor friend's 'fault' but the 'fault' of the 'different bit' of his Special Brain. This seemed to make sense to him...hope I said the right things!! Then I gave him the All Cats Have Asperger's book to look at on his own; after 10 mins he came to me and said, 'I've read it all, that's like me'. I've got another book called 'My Autism Heroes' which I'll give to him soon (again to focus on the positives). I've told him to keep this to himself at the moment, he doesn't need to tell his peers, but now he knows the reasons for his problems. He looked happier and more relaxed, gave me a big kiss, taken it in his stride apparently; and then just wanted to go on the computer! - similar to your DC, cozzie! Good luck PissyDust, sorry to say, it is indeed a long road to dx, but there's lots of support on here. ( And did you know that there is actually some ongoing research into possible future rapid diagnosis of ASD, via MRI brain scanning? not yet up and running for children, but could be... Just imagine going in, to one place, then coming out 30 mins later with a diagnosis and actual hard evidence???? - if only already available! (see my first posts, of last year).

That's fantastic Phoebus. I'm pleased it went well for you. Ds also isn't telling his peers but it much happier to know.

fingers crossed now, things might start to improve a bit at school...though it's still early days and I still feel as if walking on eggshells.... BTW, a few months ago the SENCO told me that doing a 'circle of friends' ( ?) thingy with the whole class was a possibility. Not something I've any experience of, and at the time the feeling was that it didn't quite seem the right approach for DS as (then!) he was keeping a lower profile and the others just seemed to flow around him and accept him (though not play with him really) - he's luckily in a nice class. But now I'm wondering about that approach. Is it any good? any downsides/upsides etc? does it single the AS kid out unhelpfully, or does it really help get the rest of the class more on his side?

Ben10 your mention of an Autism Outreach input sounded intriguing. I don't know about them yet: do they travel to a school on request? and I presume there's a cost involved, to be met by whom, I wonder?

Circle of friends Our school haven't done anything at all to integrate him socially yet but I think that given the right "circle" it could be great.

Autism Outreach are teachers employed by the LA who are meant to be autism trained in that they are meant to give the school pointers on what they can do to help the child with ASD in school. In our LA they have a monthly forum where SENCOs can ask for advice and they will also visit in school for some children if the forum isn;t enough help.

Thanks very much for this you seem to be well up to date and have a huge fund of knowledge and experience in this area Ben10.

That's OK. I'm on long term sick so I have all day to read all the great posts from everyone else . I don't know how I'll fit work in when I am well enough to go back

Yes, being quite new to Mumsnet myself, I am finding it increasingly addictive, and could (do) spend hours on it sometimes....so everything else I ought to be doing gets neglected!! But I can consider much of it as 'work', as people have been so helpful and have given me plenty of great advice and ideas when they've been needed. BTW I have today managed to contact a local agency re: Autism Outreach provision in our area so hopefully will be finding out more about that now.

Get well soon...or maybe that should be 'get well but not quite well enough to rush back into work too soon....'

;)

My son is 8yrs old x

Hi again, tx Pom, your son is same age as mine then....

Just for info: DS came home from school today (following our First Big Serious Disclosure Chat y'day about his Special Needs): he had a really good day, actually joined in PE (!) had no cries - and seemed to get on OK again with ex-friend/enemy/??friend-again, who now seems a little bit mollified after strenuous efforts on my our part....Despite my counselling DS to take it slowly (over revealing all to his peers), he announced: 'I told X that I had special needs, and he said that I didn't'!!

Well, no one ever said this would be simple, I suppose.......

So glad it went well for you phoebus DD would probably announce any dx at show & tell!

She is also 8.

Yes PissyDust that's probably the very next thing that DS will do!!!

Phoebus - I am so glad it went well. I have found that being honest and straight with DS1 has been the best way to go. DH had also explained to DS1 that his brain was like a Mac and everyone else's were like PCs with different operating systems. DH definitely has AS traits!

PissyDust - that show and tell idea has got me thinking! Don't think taking in his chewy sticks would all that great though...

cozzie by the way I wanted to say that my DS is ALSO fascinated by the TV schedules, and also programme ratings - and has been for ages - spooky eh? (He even wrote out some for our own family along the lines of:

'Mum, Dad and DS': 18 certificate: some swearing, mild violence and nudity (in the bath). PMSL.....)

And my DH reminds me more and more of DS now that I'm dealing with more of DS on a daily basis as he gets older, too......

Phoebus - we haven't got into programme ratings yet - but I loved your DS's!

Yes they can come out with some real howlers at times, can't they!

That's super Phoebus, my WS told everyone about his aspergers! He also has learning difficulties i,e cannot read or write! It took me from primary 1 to primary 3 to get his school to get someone to access him! Then I had a fight on my hands to get the authoritys to place him in a special needs school! He starts his new school after the summer holidays, where there is only 10 children in his class rather than 30. We told him the other children have the same kind of difficulties so he won't feel different. I had to remove him from mainstream school for 2 weeks before they understud I was determand an hey ho it worked lol. It's hard for owner children but they are all special to us and would not change them/him for the world x

Hello, I thought I'd add my experience for what it's worth though there's already so much good stuff on here.

My daughter has Asperger's and it took us five years to get a diagnosis: five years of knowing that there was something different about her, during which she became more and more isolated at school and increasingly bullied for failing constantly to understand social situations, while at the same time her vocabulary was exploding and her creative writing and art and musical abilities started to separate her from the crowd. We told her straight away when she was diagnosed, and she was relieved. Her reaction: "So I'm not stupid after all." She's now ten and a half and we're still learning every day I blog about our experiences here but since finding out that she's got Asperger's, my girl has blossomed. She sees herself as unusual and is quite proud of it - and is very up-front in situations she finds difficult about saying "Sorry, I'm not very good at this because I've got Asperger's." Her schoolmates are starting to accept her for who she is, and while I think she's always going to be a bit of a loner, her confidence is growing every day.

Good luck.

.. I forgot to add that my daughter did a Show and Tell with her class about AS after her diagnosis. She said she wanted to explain to her classmates why she'd been often so difficult to be around and to have a conversation with them about why she found their behaviour so tough too. I went in and talked to her teacher first and gave her a couple of books I've found the best and clearest is Can I Tell You About Asperger Syndrome? by Jude Welton we were lucky in that her teacher was very supportive and did a lot of research herself. She told me afterwards that watching the kids listening to my daughter's Show and Tell, she could see the penny drop!

can anyone tell me if there is a link between aspergers and 'confused personality', or even 'multiple personality'... am looking to point someone in the right direction for help...

My daughter was diagnosed in August 2011 - she was 12 years old. She had worked out the diagnosis but was adament she didn't want to be labelled. We talked through the book all cats have aspergers - through which she kept repeating "I'm not like that" and I gently replied "you are a bit". Next Monday (15 months since diagnosis) we are meeting someone from Autism Family Support - I am so hopeful that they will help me to help her accept the diagnosis. She struggles so much with social interaction and I believe her diagnosis could be a life line to help others accept her differences and embrace her delightful eccentricities. We will see.