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When/how do you tell them?

10 replies

Flame · 30/11/2009 13:25

DD1 (6yrs), in our opinion, has Aspergers. It is "mild" (I have never found a good way to explain that), doubt it would ever be properly dx'd (gave up on comm paed), but she is def not NT either.

I grew up with my sister being pretty much the same as DD1 but we never knew, she just always had an "attitude problem" or came across as selfish.

I don't want that for my children. I understand and can cope with DSis so much better now we know.

But, how/when do you talk to them about it? DD1 is pretty much oblivious to any differences with her peers (which is nice), she seems a bit baffled by why they don't always follow instructions to the letter etc, but that's about it. But we're getting to the stage of trying to deal with home issues like the chair.... she has to sit in the same chair in the same position for dinner. DS has started trying to change the positions every now and then (I think because it winds her up ). He is old enough (3 1/2) to start getting miffed that a) he can't sit there and b) she always "wins" that fight. At some point I need to be able to explain to him that some things she needs the same and she's not just arsey.

I know I am thinking in advance w/r him, but it seemed wise to ask in advance

OP posts:
troutpout · 30/11/2009 13:43

Not sure...we told ds as we went through the dx process so it was pretty straightforward i think
Are you sure she will never be properly dx'd? Hope i don't come across as rude...but what i'm saying is that if not perhaps you could leave it open and say something like "you have these difficulties...so does Auntie susan... we think that maybe the difficulties you have could be called Aspergers..perhaps one day we could see about getting you some help with the things you find difficult"
Ds seemed too mild for a dx at 5 or 6 but by 8 it was becoming evident that he would eventually have a dx and funding...so maybe it's something you could mention.
ds has a little sister who we could mention his dx too from about 3.She has a good grasp of his difficulties now (she's 6) and she can (on good days )! accommodate pretty well.He is quite flexible though...so haven't had the fair/unfair arguments as much.

Marne · 30/11/2009 13:45

Dd1 is almost 6 with Aspergers, i have told her that she has AS but i am not sure how much she understands, dd1's AS is very mild, she knows that she can not control her feelings like other children and she knows she has a very high IQ.

Her sister is 3 and has Autism, dd1 is always asking 'why can't dd2 talk' and 'why doesn't dd2 listen?' i tell her that dd2 has Autism and has trouble to communicate.

I think its best to be open with them, i tell dd1 'that most people don't see things the way she see's them but that's not to say the way she see's things is wrong'.

WetAugust · 30/11/2009 15:44

You need to explain it as you would explain adoption to a child - as early as possible with the explanation getting more sophisticated as the child ages.

Flame · 04/12/2009 18:04

Just realised my reply to this didn't post Thank you so much

OP posts:
BriocheDoree · 05/12/2009 06:24

I've already had to start explaining to DS (2.5) about DD (5, severe language delay, PDD-NOS) because he was getting upset that she didn't say "bye bye" when she went off into her classroom in the morning .
Don't think I'll be in a position to explain it to DD for a long time.

lisad123wantsherquoteinDM · 05/12/2009 09:03

we havent told dd1 yet, but have explained to her that she has difficulties with worries (which she knows herself) and so we are all trying to help her find an easy way of coping. We have books about the house about asd, and she knows she gets extra help in the way of boards ect in school.

Again dont want to come across rude, but isnt it goingt o be difficult as she gets older thinking/saying she has ASD but without an dx school refuse to accept this? Could she just have traits? Could you push further for a dx? I can just see it will be difficult for her when teachers refuse to accept this explanation as no dx, this world is confusing enough for them as it it.

Flame · 05/12/2009 10:13

So far the teachers that she has had have just accepted my word for it that she has traits, asked what makes life easier and have gone with it. She is generally much better at school than at home as it is all rules and routines - she just comes across as VERY well behaved (if a teacher has said not to do it, then she won't do it etc and gets very stroppy with friends who DO), and slightly pedantic (following instructions to the letter when they weren't meant to be quite that rigid).

I really don't know what to do for the best tbh. The comm paed was useless, kept telling me that she wasn't autistic and that AS is language based and can't even think about until she is 7/8 . The whole language based thing made me have no confidence in seeing him when she is 7/8.

Oooh just remembered that in my pregnant haze the HV told me that they have a new woman at the surgery (nurse/HV/something) who is specialised in all things SN. I'm taking DD2 to clinic next week so will ask about seeing her and get things more official again.

OP posts:
lisad123wantsherquoteinDM · 05/12/2009 14:37

what do they mean by language based? DD1 was an very early talker and could hold a full convo by 2

Flame · 05/12/2009 14:51

Not a bloody clue tbh. I think they mean interpretation of etc. He was prob very good with physical SN but anything on the spectrum he was useless

OP posts:
lisad123wantsherquoteinDM · 05/12/2009 16:52

hard one, dd1 doesnt get all the reading between lines/emotional stuff and does take things to the letter eg "get off my back" "Im not on your bac"!
Keep trying have you seen anyone from CDC yet?

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