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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)....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....

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

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).

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.

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.

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 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.

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

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...

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

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

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.

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...

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!

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.

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

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

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

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

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

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......

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.....)

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 11:40:00

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

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 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.......

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

My son is 8yrs old x

;)

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