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Best way to tell DD (11) about her Aspergers diagnosis

(21 Posts)
saffronwblue Mon 21-Jan-13 08:57:32

DD was diagnosed a year ago after an assessment with a psychologist. I wasn't ready to tell her at the time for lots of reasons - one being that she is so desperate to fit in that I thought the label would make her feel worse. I also have felt quite emotional about it and wanted to work through my own feelings before helping DD manage hers. She is very bright, very introspective, has difficulties sleeping, worries enormously about things and can't let past injustices go.
She sees the psychologist regularly to help with anxiety. Tonight the psychologist said to me that she thinks DD will benefit from knowing why she feels different from others and strongly recommends we tell her in the next week or so, before her next appointment.
Does anyone have any suggestions about how to do this in a way that will
help her deal with it?

MiddleAgeMiddleEngland Mon 21-Jan-13 09:39:50

No real suggestions, I'm afraid. I don't have direct experience, but I do know that a friend's son was hugely relieved to know that he had something with a "name", rather than just worrying that he was a bit odd. I think they tried to treat him as normally as possible, but had a special time at bedtime to talk privately about anything which had happened in the day. Having that routine, and many others, really helped him.

I hope your daughter gets all the help she needs.

TroublesomeEx Mon 21-Jan-13 09:44:58

Hi

I don't have any advice on how you can tell your daughter, but I wanted to share my own experience.

My son was diagnosed with dyspraxia last year after spending 13 years disorganised, clumsy and 'useless at everything'. The dx was like a window being opened and the fresh air and sunlight flooding in for him. Rather than just feeling like he was "crap" he was able to say "I just find X more difficult because of the dyspraxia".

He's told his music teacher who was able to help him with things in a different way, he's been receptive to coping strategies we've introduced, he's more confident and he's a different person!

I would suggest that as long as you present it to her in a positive way and not as something that is 'wrong' with her (because there is nothing 'wrong' with her) that she will be relieved to having something to explain the way she feels.

SomeKindOfDeliciousBiscuit Mon 21-Jan-13 09:45:26

I was relieved to know that I wasn't just a bitch or mentally ill. I think the hard bit might be explaining why you haven't told her about herself for a year - that makes it seem like a bad thing. Would it be plausible to say you've just been told the diagnosis and express it with a show of relief?

OptimisticPessimist Mon 21-Jan-13 09:50:01

My DS was quite a bit younger (8.5) but the paed recommended I tell him right away. I made sure we had plenty of time and quiet to talk (younger kids in bed) and started off by saying something like "you know how you've been to see Dr. X a few times now? And you know that I went to see her today to have a chat with her" and then explained that the reason we'd done that was to see if his brain worked differently to the way most other people's did. I said that the paed thought that it did and the name for what makes his brain work differently is Asperger's Syndrome. I said it meant he was really good at certain things (maths and computers in his case) because his brain understood those things really easily and knew how to work them, but also that his brain wasn't so good at working out other things (in DS's case, things like understanding other people, impulse control etc.) He was quite open to it, accepted it happily (he knew already tbh that he struggled with things more than other kids in his class, and he was happy to get a reason for that I think). If we need to refer to it in short hand I call it his "special brain" which is a term he finds easy to understand, but that might be a little young for your DD at 11.

Good luck with it - I'm sure, like the PP said, she will be relieved to have a name for some of the things she finds difficult and if she does struggle, you obviously have a good psychologist to help her come to terms with it.

saffronwblue Mon 21-Jan-13 10:00:31

Thanks so much for your swift and helpful responses. I am going to say (with the psychologist's permission) that she has been assessing her all year and has now realised what it is. I do feel bad about the delay- I just have had to process it and get to the point where I do feel positive that it is part of what makes her so gorgeous. I also think I have it as well so a lot of the struggles DD has experienced are very painfully familiar. I do realise it is not about me but about arming DD with an insight into her particular strengths and areas that she finds harder.
I guess it is a moment where once she knows this information, she can't "unknow" it so it feels like a big deal. Am hoping that she will feel relief and understanding - love the image of the window opening and light and air flooding in.
OK am teary now.

PolkadotCircus Mon 21-Jan-13 10:01:25

Hi I have just sent you a pm,there is a book on this subject.

CloudsAndTrees Mon 21-Jan-13 10:02:04

She has been to see a psychologist and presumably knows she has another appointment, so she knows there is 'something'. It is unlikely to come as the bombshell you are expecting it to, because of the appointments and the fact that she will already be aware that she is different to her peers in some ways.

My ds got his AS diagnosis when he was 7, and like you, I didn't want to tell him right away for various reasons. But eventually I thought that same as your psychologist, and that it would benefit him to know what he had. I told him in a very matter of fact way about his 'Aspergers brain' that just does things differently, and I explained it as being no different to any of the other unusual differences that some people have, like double jointed fingers or unusual birthmarks.

It has very much helped him to know, it's his thing that he is going to have to live with, and he can't possibly be expected to do that if doesn't know what he's dealing with. I'd suggest the same goes for your dd. There are hundreds of books on the subject, I'm sure if you do some research you will find a few that will benefit your dd. it can help a lot to read other people's experiences and to hear easy strategies to cope with little difficulties that she might face. If she learns to cope with some of the little things, it will help her deal with the bigger things and hopefully help to reduce her anxiety eventually.

Nowadays when my ds (now 12) is fixated on an idea and is finding it very hard to see anything any other way but his own, I can say 'that's your Aspergers brain that's making you think that, but other people tend to se it this way', and he accepts ideas much more readily that way. He might still think he's right, but he is at least more open to thinking that his way is not neccesarily the only way.

CwtchesAndCuddles Mon 21-Jan-13 10:04:00

If you re post (or ask MNHQ to move) on the special needs children board you will get a lot of resposes from mums who have been through this and will advise some good books etc for your dd.

EllenJaneisstillnotmyname Mon 21-Jan-13 10:13:46

All Cats have Aspergers book is a nice one for her to read as well.

When I told my DS2 he had ASD he was 11. I kept it very positive, your brain is wired differently to most other people and this means you are really good at, eg maths or remembering facts, or music or whatever fits, using a bit of poetic licence if necessary. It does mean that you find, eg making friends, thinking up stories etc more difficult. 'There are many people who have Aspergers,' and you can give a few role models like Bill Gates, or whoever might appeal?

My DS2 was fine about it, all I have to worry about is that he doesn't try it as an excuse to get out of homework! wink

mrsjay Mon 21-Jan-13 10:19:50

Try and find a book that may help her or maybe the autisim society website may have some info sorry no realy advice

DD is dyspraxic and it is difficult it is only in the last few months she has understood why she is different and a bit disorganised and clumsy ( she is 14)

Branleuse Mon 21-Jan-13 10:19:56

Be blasé, talk about peoples differences, and how different people have strengths and weaknesses. Ask her if shes ever wondered why she finds some things tricky, or wondered why she has to see the therapist.
tell her that she has aspergers, and that a lot of people do, and that its ok. Ask if she has any questions. Talk about the famous people who have aspergers.

I cant remember how the conversation went with my ds1, but he was totally ok with it and is quite open about it

Branleuse Mon 21-Jan-13 10:20:42

havent told ds2, but hes only 5 and wouldnt understand yet. Ds1 was diagnosed at 7, but we didnt really explain it to him till he was about 9 or 10

chocoluvva Mon 21-Jan-13 10:30:22

I compared it with being left-handed.

The way his brain works is similar to a minority of people which can make it harder for him sometimes. We use the phrase, 'neuro-typical'.

I discussed individual differences with him and strengths and weaknesses. DS is 13 now and wants to fit in with his peers. I sometimes tell him to consult his older sister about clothes, skin care etc and this gives him confidence.

chocoluvva Mon 21-Jan-13 10:31:40

My approach was the same as Branleuse's.

I think it's working.

makethemsmile Mon 21-Jan-13 11:42:55

I told DS when he was eight, when he was first undergoing assessment (it was clear to me he had AS even though we didn't get the written dx until he was 9). I used a variety of books to help him, one was 'Can I tell you about Asperger Syndrome' and 'The Curious Incident of the Dog in the Night Time' (actually that was not the best choice for DS as DS found it hard to relate to the main character). I found some websites listing famous people on the spectrum (am actually a bit hmm about some as many were never officially dx and there is some controversy about them) - but for the purposes of boosting DS's self-esteem, they helped him view AS in a positive light. There are more books and media examples I think now that have emerged even in the past few years.

I think it is better, the earlier you tell them. DS is 14 now and is very comfortable with his dx. He goes to a specialist AS school now, which really helps as it normalises his issues and he can see that there is a broad range of AS. Some students have more difficulties than him in some areas, but others have strengths that most people wouldn't think possible with AS.

I didn't try to downplay it though, as DS's issues are obviously quite severe to need a specialist school, and it's a lifelong condition, as well as a disability - I think it's important that they recognise it as such so they can develop the tools to self-advocate. It's not just 'being different' - like being left-handed - it's being different in a way that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

I think it can be most helpful for dc to come into contact with other young people on the spectrum, so they don't feel they are the only one. Even if your DD isn't a candidate for an AS school, they may be able to access a special needs play service through Short Breaks, or you might be able to meet other parents through local support groups and arrange a playdate.

I hope your DD is getting the support she needs educationally - that was one of our biggest battles, and also getting DLA and respite.

Catchingmockingbirds Mon 21-Jan-13 11:45:56

All cats have Aspergers is a great book, that's how I explained it to DS but he's younger than your dd so she may benefit from a more age appropriate book.

Catchingmockingbirds Mon 21-Jan-13 11:49:08

I kept it very positive too, for instance you're sensitive to sounds and loud noises was instead - "you've got very good hearing, better than mine or dads.".

saffronwblue Thu 31-Jan-13 07:52:13

Just updating to say I told her today. It went quite well. At one point she said "I'm not sure what I'm meant to do with this information." Later she met with the psychologist who lent her All Cats Have Aspergers' to take home. DD's main point was "Yes it (the dx) makes sense".
Of course she may have future different reactions but I am so relieved to have told her.
Thanks again for all your support.

troutsprout Thu 31-Jan-13 08:16:41

Glad it went ok

chocoluvva Thu 31-Jan-13 09:12:19

Thankyou for updating. Good luck.

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