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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) 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 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.

notactuallyme Tue 15-May-12 15:01:11

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

Message withdrawn at poster's request.

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.

Ben10NeverAgain Tue 15-May-12 17:16:54

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

Ben10NeverAgain Tue 15-May-12 20:27:06

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.

Ben10NeverAgain Tue 15-May-12 20:58:55

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

Ben10NeverAgain Tue 15-May-12 21:47:23

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(?)

Ben10NeverAgain Wed 16-May-12 13:34:00

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.

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