Here some suggested organisations that offer expert advice on SN.

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

(61 Posts)
phoebus Tue 15-May-12 14:48:38

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....

jandymaccomesback Tue 15-May-12 14:57:42

My DS wasn't diagnosed until 12 and we told him straight away. He had long known he was different and he was pleased to know there was a reason.
It helped at school because it made teachers aware of why he did the things he did. We only told people outside the family who needed to know. He is 17 now and our neighbours still don't know.

I am working towards telling ds (9) (newly diagnosed) and have not shared with anyone except school and 2 friends outside of the family.

flowwithit Tue 15-May-12 15:43:08

We recently had a dx for Ds age 11 and he wanted to know why he was finding things so difficult. He says he doesn't like being different and doesn't want to have ASD but he has said he wished he knew earlier because he has struggled so much and he wanted to know why. We told family and I have told friends too because it causes an atmosphere and i think they would know if you were trying to hide something. I think we should be open and not treat it like a bad secret. However I have not told hos peers classmates ect as I worry about bullying and I don't think they would understand. I don't mind any adults knowing as long as they don't tell their dc's.

SallyBear Tue 15-May-12 15:49:53

My DS was Dx with AS at 8. He is now 12 and we told him about 6 months ago. In hindsight we should have told him when he was first Dx as he could have gone on an ABC for Autism course which probably would have helped his understanding of the Spectrum and what it means to him. We were given bad advice. sad

HotheadPaisan Tue 15-May-12 16:01:53

I am fairly open about DS1's difficulties with others (some issues have been obvious over the years) but I am mindful that it's his diagnosis and I don't want to infringe his privacy or disclose to gossip mongers.

It is what it is though and there won't be any hiding it for much longer. I will definitely be telling him, we already do talk about everyone being different and so on and the things he finds hard and why - his brain is wired differently which makes some things harder for him but other things he finds easier than others, it's as simple as that really.

Ineedalife Tue 15-May-12 16:04:40

My Dd3 is 9.5 and was dx'ed with ASD 7 months ago.

We haven't told her yet but are planning to in the summer hols when she is at home with us and has time to ask questions.

We have been given conflicting advice, CAMHS suggested that we dont tell her till she is older but many people on here and my gut instinct say tell her now.

I am inclined to go with the expert advice on here rather than someone who only knows the theory of living with someone with ASD/AS.

We have told school, closd family and a few trusted people who regularly spend time with her.

Good luck whatever you decidesmile.

merrymouse Tue 15-May-12 16:17:51

Wouldn't it be nice if it was just like telling somebody "Well the optician said the reason you can't see the board is that you are a little short sighted, we'll get you glasses now and you can try contact lenses when you are older". I know for all sorts of reasons that it isn't the same. (For one, it doesn't seem as though even the experts can agree completely what defines having an ASD, whereas needing better glasses is pretty clear cut). But in many way it is.

I am a bit surprised that people like CAMHS suggest delaying?

Sorry for lack of wisdom!

Ineedalife Tue 15-May-12 16:22:15

Yes merry, I was surprised too. I asked for support and guidance on the best way of approaching it with her and it was suggested that she was too young and didnt need to know yethmm.

LocalSchoolMum Tue 15-May-12 17:09:54

DS was in Yr 5 when he was dx with Aspergers. We read through the diagnosis letter with him. I'm not sure how well we explained it as we couldn't totally understand it ourselves. He had a fairly difficult time the last couple of years at Primary school when it was very apparent how different he was from most other boys, especially when it came to games like football. We managed to 'persuade' the school to form a Circle of Friends for him and that helped quite a bit. At least the nicer children could understand that he wasn't always intending to annoy them with some of his more challenging interactions.
Some of the problems at Primary were with staff not understanding ASD even after they were given the information. Now he's in Secondary, in Yr 9, things are a lot better. The SENCO and support staff at his school are wonderful and he has made quite a few friends. Something happens to NT boys brains in puberty and they actually become a bit more like boys with ASD, so perhaps that's partly why he fits in better.
I usually tell people he has ASD and he does, too.
Have you read the book on Aspergers by Tony Attwood? That's a good place to start. There are some good children's books as well, such as the Blue Bottle Mystery.

We told DS a month ago when he was 6.9. He already knew he had coordination and motor skills problems that were called dyspraxia. We discussed that the paed might give him a name for the other things that he found difficult. Then when we got the dx we told him using the All Cats have Aspergers book. His behaviour etc has been so much better since we told him. He is pleased to know that there is a reason behind.

I have just started dropping it into normal conversation with a couple of other mums and I know that it will get around.

phoebus Tue 15-May-12 17:56:46

Just got back from school run and read all your posts in response to mine, am so grateful to you all and it's good to feel I'm not alone in this experience, and to hear from those who have been this way before......It does seem that there are several different approaches, and probably to follow one's gut instinct with the child one knows may be the best way. My DS is currently 'stuck' in an ongoing and increasingly troublesome confrontation situation with (ex?) friend, and maybe it will be the time soon for me to sit him down and spell out to him why it's not all the other lad's 'fault', and that he needs to accept that he too has got issues which are most likely contributing a lot more than 50% of the problems.... I have got the Cats Have Asperger's book but haven't shown it to DS yet. I'll look into Blue Bottle Mystery book as that could be a good way in too.

I think I will have to share with the other boy's Mum that DS has got an AS diagnosis, as otherwise I feel it's putting her child in a false position when we try to sort out the whys and wherefores of the boys' recent fallouts. But I guess I am worried that once the cat is out of the bag, that's it: - other parents do talk, and their kids could overhear and then start taunting DS at school saying 'you're an asparagus/hamburger/whatever' (that's from Tony Attwood, yes I know his book well - it's my bible! what a helpful man he is). I'd hate DS to find out that way, so maybe that's another argument for early disclosure. I really know what you mean merrymouse about 'if only it was as easy as short sight' - that's such a large part of the problem. I've often thought how much easier it would be if DS was in a wheelchair or something; because he LOOKS so normal, others assume his behaviour will be 'normal'. The AS disability is actually something neurobiological in the brain - but that's invisible to others (short of an MRI scan?) and also carries all the stigma of a mental health issue to the uninitiated. A lot of teaching staff are also woefully unaware or untrained, I find. Thanks again for all the posts in response; please keep them coming with any other / new comments, anyone else out there who has a DC with AS.

PissyDust Tue 15-May-12 20:21:35

I hope you don't mind my mini hyjack on your thread phoebus but DD2's teacher asked to speak to me today and wants to refer DD to the school SEN nurse..

I'm blush that I know knothing about sen, the different levels or what this will mean for DD.

The teacher also said I should book a dr's appt to discuss her behaviour with them (I have one for next Tuesday)

Deep at the back of my mind I have some times wondered if DD may feel different in some ways, she can be irational, impulsive, nasty,loving, playfull... I won't go on because I don't think I would stop.

Is there something I can read or should I wait for the school nurse to be intouch?

Any help would be greatly received, I'm feeling a bit out of my depth sad and to scared to start my own thread incase I say the wrong thing

Hi Pissydust I guess you are concerned about Asperger's Syndrome as you've posted on this one.

This is a very useful place to start if you want to do some reading.

Also if you want a book this or this which should be available from the library

Feel free to start your own thread. You wouldn't say the wrong thing. Good start though to see the GP. If you are concerned about AS, then you need to ask for a referral to a Developmental Paediatrician. It can be helpful to take a list of your concerns with you to give to the GP.

PissyDust Tue 15-May-12 20:54:36

Thank you Ben I will take a look at your links, I'm not sure what the school think is happening. I asked a few years ago at her old school if they had any concerns about her behaviour, lack of friendship skills etc but they said her concentration is fine and she is working above expected levels so not to worry.

She was labelled by the school as a bully by the end of year 2 so we moved her last September and now this school are saying they think she needds to see some one.

I don't know what to think or expect if I'm honest.

Have a look at the NAS link and see what you think. FYI though children with AS do normally have average to above average intelligence.

The whole thing with SN is completely baffling and scary to start with when you first are told that the school have suspicions that there might be an issue. We are all here to support you.

PissyDust Tue 15-May-12 21:08:55

Thanks Ben I have had a look at the link and I feel a bit sick and emotional as it is DD3.

I can't belive it, she is just our naughty middle child in many peoples eyes.

I've tried eberything to help calm her down, removing certain foods, arranging 1:1 play dates (she can't handle group playing, has to always be the leader and can't just join in)

I looked at the SEN board but was directed here, is it ok to start a thread here even?

sad Sorry again for the hyjack phoebus

Of course its fine to start a thread if your own.

I completely understand your feelings. I just had a naughty boy. However now I have the same lovely boy who also happens to have as. Getting him a dx has helped us all. She will still be the same lovely little girl. Here's a brew. Look after yourself and do a thread and let the mnsn community come and give you a communal hug x

phoebus Tue 15-May-12 23:44:09

Hi PissyDust smile just logged on again, and wanted to say how I feel for you in your situation. I don't mind a bit about your 'hyjack', we're all in this together and I'm fairly new to posting on Mumsnet myself, so I also sometimes find myself in unexpected places! (still trying to learn how to do bold and emoticons too, actually - so you're well ahead of me there). Thanks Ben10 for looking after PissyDust: I know how daunting it feels when it begins to dawn on us that our beloved (but different/struggling) child might actually be on the road to getting one of these scary labels, with all the implications that those carry with them......It's a steep learning curve, and a long road at the same time.

Looking back I suppose it's taken us around 5 years of concerns (initially mostly from DS's carers) and question marks, to have finally arrived at the diagnosis. What I have found hardest has been the being referred (at snail's pace too) from pillar to post, from Health Visitor to SALT to SENCO to OT to Ed Psych to Community Paediatrican etc etc...(and then we moved to another county and had to start all over again!) GP is certainly a good initial point of contact. Interesting to see on tonight's news that the govt now has plans (long overdue) to try to bring all these different professionals under one SEN umbrella, and hand over more control and maybe funding?, to the parents, who are best placed after all to try to get some joined-up thinking re: assessment and treatment for their child. I've found that the system (NHS, not private) can move pretty slowly, paperwork can take forever to circulate, and I've had to be pushy, proactive and definitely on top of things to ensure that professional A communicates with professional B, sends on the necessary paperwork etc. In the end I always made extra photocopies of everything and took them along to each new appointment, as - almost invariably - the person I was seeing (eg paediatrican) should have - but hadn't - had the previous report (eg from Ed Psych) that they should have had. Going private for DC's diagnosis must cost a bomb, but is probably very much quicker, I expect. We didn't consider it then, but looking back I wonder if we should have done so - it might have saved us a lot of tedium, frustration and time-wasting. Things were so vague and inconclusive for poor DS for so long.

Pom75 Tue 15-May-12 23:44:20

My son was diagnosed with aspergers in September 2011, we decided to tell him and explain why he is the way he is. We found this was best for are son as he now understands, in which has helped him to develop friendships. As for telling other mothers this too helped them understand why my son is the way he is. I hope this helps

Penneyanne Wed 16-May-12 11:52:54

Ds,12,was dx with Aspergers in February 2011 and it came as a bolt out of the blue for us when the school asked for permission to refer him to the ed.psych as they had some 'concerns' with his behaviour etc.confused. We went for a private dx as ds was 11 at this stage and the waiting list to be seen was so long . To be honest ,because of his age, he understood a lot of what was going on with assessments etc and took the whole thing rather badly-became very withdrawn for a while and hated being different. We left things for a while and he eventually began asking questions again himself and with the help of some good books which I got for him- Aspergers, what does it mean to me? by Catherine Faherty and Can I tell you about Aspergers?(a lovely short book which simplifies it for the child) he has come to accept it. We have only told close family,friends etc and others on a need to know basis but I am now finding that it is becoming more obvious as ds is getting older.He is already a big,strapping 12 yr old. I recently disclosed it to our neighbours ,who see ds a lot, only to find that they already knewconfused-had worked it out for themselves that he 'was not quite right' but didnt like to mention ithmm. So I now am not sure whether or not to tell people in general or carry on as we are doing.My big fear,as someone else said, is that ds will get teased and bullied etc. sad

phoebus Wed 16-May-12 13:20:25

Thanks for this, Pom75- we may eventually do something like this, as it does seem better in many ways to be fairly open about it especially with those people who interact daily with DC. ( I wonder how old your son was when you told him? as the child's age and level of maturity probably has something to do with how well they accept the news). I think that there's also the aspect of some other parents of classmates perhaps needing to know so that they understand that it's not just a badly behaved child but something that DC can't easily help doing. Without openness, other parents at school gate could quickly come to the wrong conclusions.

Penneyanne thanks for the books you mention, which I'll try to get hold of; personal recommendations are so useful. I do know so well what you mean about the doubt as to how open to be, though: the 'need to know' guideline generally seems to be quite helpful, but as Hothead Paisan also said on this thread, the dx actually belongs to the child and it's his privacy involved too. This makes it harder when the DC is so young and other kids could be cruel. I don't really think that other parents to whom one has 'disclosed' can really be trusted to keep the dx a secret from their kids, as things so easily slip out or get overheard hmm .As Ben10 says, if it just gets dropped into the conversation with one or 2 other Mums I'm sure that the news will spread like wildfire on the bush telegraph......and maybe that's what needs to happen(?)

TBH in our school the two boys out of 310 children who have AS stand out. You can see that they are "different". Something about the way they walk, dress, I don't know. IMO they look so lovely and geeky (hope that doesn't offend anyone - I love my little geek, and my geek husband and dad, oh and me..........)

Anyway, it is up to you how you do it. It is his diagnosis. It's up to you when you tell him and how. I know that EllenJaneisnotmyname had a session in school where the children were told about invisible disabilities. As a child I had no idea that there were disabilities other than the ones that you could see. This is something that I am considering for DS at school in the next school year (y3). I'm gong to discuss it with Autism Outreach.

phoebus Wed 16-May-12 13:48:25

Hi Ben10 I've just been giggling at your other thread 'Top 5 Reasons not to Piss Off an Autism Mom'.....thanks for that!! (need a laugh at the moment)

Yes my little geek has already probably been well spotted by other Mums already who have just been too polite to mention it to me.....Your suggestion about the school session on Invisible Disabilities, is brilliant and I think that it is just what is needed - not just for NT peers but also for teaching staff and maybe even other parents. After all, the condition is tough/complex/vague enough even for us to get our own heads around, isn't it ?- only fair to give our DCs classmates a bit of helping hand also in getting a grasp of it. I'll see if our school might consider this. It's a two-way education of two different groups isn't it - when two different worlds/languages intersect , some translation is definitely needed!!

Penneyanne Wed 16-May-12 14:02:08

Bloody hell , I am a bit gobsmacked at claw's thread which I have just looked at-ds and porn- my ds used to use binweevils and moshimonsters all the time. He has now grown out of them but I would have considered them to be relatively harmlessconfused. I am going to cheer myself up now and read ben10's thread 'top 5 reasons...' instead.

LovelyLovelyWine Wed 16-May-12 14:13:08

My son was diagnosed at 5 yrs. He is now 7 yrs old and we haven't told him yet, but I think the time will come before his eighth birthday, as he is starting to get more awareness of his differences.

We have told friends and family, although not other children we know.

All the parents of kids at his school knows anyway, as he attends specialist provision.

I try not to blurt out his condition to randomers, but now and then I will need to let parents of children he is playing with in the park or whatnot know, in the hope they will maybe be a bit more understanding of some of his eccentricities.

GiveTheAnarchistACigarette Wed 16-May-12 14:37:23

I told ds pretty much straight away, he was nearly 7 when dx given, just over 2 year ago. It has really helped him and he frequently reads the All Cats... book.

I told school immediately, feeling extremely smug as my suspicions of AS had been poo-pooed by themsad A year ago his fab teacher spent a series of sessions with the whole class learning about AS, I thought it was really important that his class-mates knew why he is different and how they can help. We would certainly explain physical disabilities to other children in a school and expect them to be supportive and kind, should be the same for invisible disabilities.

I've told some of the parents, and I'm sure the gossips spread it further, which I really don't care about, you do need a thick skin parenting a child with SN.

PissyDust Wed 16-May-12 21:13:19

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!

cozzie Wed 16-May-12 21:36:44

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 smile

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!

phoebus Thu 17-May-12 00:18:15

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 confused- 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.

phoebus Thu 17-May-12 10:59:54

smile 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.

phoebus Thu 17-May-12 12:45:01

Thanks very much for this thanks 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 grin. I don't know how I'll fit work in when I am well enough to go back grin grin

phoebus Thu 17-May-12 16:43:23

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....smile'

;)

Pom75 Thu 17-May-12 19:05:42

My son is 8yrs old x

phoebus Thu 17-May-12 20:14:15

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 (!shock) 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'!! confusedconfused

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

PissyDust Thu 17-May-12 21:01:34

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

She is also 8.

phoebus Fri 18-May-12 11:40:00

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

cozzie Fri 18-May-12 13:07:38

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...

phoebus Fri 18-May-12 13:30:49

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). grin PMSL.....)

phoebus Fri 18-May-12 13:32:14

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......

cozzie Sun 20-May-12 19:04:49

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

phoebus Mon 21-May-12 12:07:24

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

Pom75 Mon 21-May-12 19:29:07

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

SophRunning Tue 28-Aug-12 14:06:55

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.

SophRunning Tue 28-Aug-12 14:23:31

.. 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!

riverdeep2 Mon 03-Sep-12 18:07:09

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...

HelenKE Wed 14-Nov-12 20:48:14

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.

HelenKE Wed 14-Nov-12 20:56:32

PS I am sorry that I am so late joining this thread but I am also struggling with who to tell and who not to tell ... I am erring towards being more open but sometimes wonder who it benefits - my daughter is the priority and I am not always sure of the benefit to her unless I can be sure the person will be a sympathetic recipient of the news. The Autism Society has some useful information - http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-asperger-syndrome/asperger-syndrome-broaching-the-subject.aspx

Ineedalife Wed 14-Nov-12 21:10:29

Hi helen I think it is really hard when children are older and have their own opinions on themselves.

My Dd3 was 9 when she was diagnosed but I didnt tell her till she was nearly 10.

She is very certain about who we should tell and who we shouldnt.

She has just started on a course at school which is called "understanding me" [i think]. It is all about understanding the diagnosis, what it's implications are and how it affects each of the children in the group.

She finds it tough to accept that there are things that she is not good at and social skills are one of those things.

Maybe you should start your own thread on the board, some people might see the original date on this thread and not read to the end.smile

3b1g Wed 14-Nov-12 22:18:43

DS2 was diagnosed soon after his ninth birthday. The diagnosis was given while he was in the room. After we left, he asked "Why were they talking about Asparagus? I don't even like Asparagus!". At the time I was a bit put out that they'd disclosed the diagnosis to him without asking us first, but as time has gone on, I'm actually grateful that we never had to face that decision of when to tell him. He sees it as a difference rather than a disability, so isn't bothered by people knowing at all. In fact he is going through a stage of leading with this when he introduces himself to new people! hmm He will be moving to secondary next Autumn, so not sure whether to talk to him about maybe saving the information about Asperger's for once he gets to know people rather than opening with it in the first 30 seconds...

Hi everyone,
I'm not sure this is the correct thread in which to post this so please feel free to tell me where to go ;o)
I am concerned that my daughter is somewhere on the Asperger's continuum... she was adorable as a baby: smiling, waving and playful. However, since she was a toddler we have had terrible problems with her behaviour in terms of not looking us when we are talking to her; being deliberately defiant; rolling her eyes in an alarming manner when we try to discuss her behaviour with her or advise her on manners; not understanding other people's feelings or the need to say please, thank you or excuse me; being overly anxious about things such as flooding(!), social interactions joining in with other people at school or after school activities. She didn't make any friends at all at nursery except with one little boy, and she struggles to manage relationships at school. Her teachers have described her as disengaging from them, being very quiet but very bright, top of her class etc. It has got to the point now where she attacks me when I try to enforce rules at home - where do I turn? Is it the school or the GP? How do you get your GP to take you seriously and not just dismiss your concerns as typical pre-teen behaviour? I am aware that we may have handled her in completely the wrong way and made things worse, or even (horror!) created the problem in the first place, but I would very much appreciate some advice. Thanks x

alison222 Mon 19-Nov-12 11:50:24

Hi courduroyangel.
I would suggest making a list of your concerns- like you have here, and getting the school to do the same and then take them to your GP. You do not need to take your DD with you. Ask the GP to refer you. The process seems to be different in different parts of the country, we were referred to CAMHS where DS was seen by a clinical Psych and a SALT and given a DX, but I know that others have had a different route to get a Dx.

Thanks Alison222 - I am not even sure that it is possible for a girl to have Asperger's as all the references seem to be about boys. I can identify with many of the posters here, though...

alison222 Mon 19-Nov-12 12:17:42

Less girls are diagnosed, as they present differently in a lot of cases.
There are people on here with girls diagnosed with AS.
I am sure that some will turn up and tell you so.

HelenKE Wed 09-Jan-13 20:02:59

My daughter was diagnosed with high functioning autism (=aspergers) 18 months ago after referral from GP to CAMHS. She struggles with the diagnosis but it does help her understand her feelings a little. Life is tricky for her. A steep learning curve for us all. Sometimes heartbreaking, often inspiring. The new school term is already proving very tricky but I think her diagnosis is helpful although of course there aren't straightforward solutions. She has currently been referred back to CAMHS for CBT and we are so hopeful that her days will become more manageable as a consequence. Good luck - I strongly recommend explaining your concerns to your GP but be prepared to be assertive in requesting information and help.

BiddyPop Thu 10-Jan-13 13:02:26

Corduroy angel - I hadn't seen your post before, but our 7yr old DD has Asperger's ADHD dx. And the Psych who did the dx said that she does see a fair few girls with it, just that all the research does seem to be about boys as they are easier to "standardise" and tend to be more prevalent in the US in particular (where lots of research is done).

Thanks Biddy... whenever I read about Asperger's it always seems to be talking about boys. I have since been told that it can present differently in girls - my DD is bright but won't join in with other children unless she knows them; won't join any groups (Brownies etc); appears to be very ill at ease with other children and has never made many friends. I thought she would get better at it as she got older but sadly not. Have now approached Home School Liaison and been directed to school nurse... here goes! Thanks for your message x

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