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SN children

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Original poster

What are the reasons not to tell a child about asd diagnosis

18 replies

nikos · 19/12/2011 21:24

I don't know anyone in RL who hasn't told their child about their dx and am genuinely interested. I was talking to a professional who said a lot of parents don't tell.

OP posts:

IndigoBell · 19/12/2011 21:33

I told. But then my DS is very HF.

The main reason I can think of not telling is if the child wouldn't understand, if the child wasn't aware that they were different.

If the child knows they're 'different' then I really, really, really think you should tell them why.

EllenJaneisnotmyname · 19/12/2011 21:33

I only told my DS last year. He's 12 and was DX when he was 3. My reasons were not to purposely keep it a secret, more that it was beyond his comprehension. Even now, he's not interested in the DX. I wanted to tell him in case he heard it mentioned by others and wanted him to hear it first from us.

EllenJaneisnotmyname · 19/12/2011 21:35

Ah, crossed with Indigo. Yes, DS2 didn't know that he was different, and now doesn't care!

Original poster

nikos · 19/12/2011 21:44

Do you think it's fairly common then, not to tell?

OP posts:

EllenJaneisnotmyname · 19/12/2011 21:52

I think if your DC doesn't understand, then yes it is common, but if they are HF and could benefit from knowing why they struggle with some things, then it is usual to tell them. Choosing what and when is right for your child, that's another matter...

Triggles · 19/12/2011 22:24

Our DS2 is 5yo and simply wouldn't understand at all. When he is ready to understand, then we will tell him.

Ineedchristmascake · 19/12/2011 23:09

We haven't told Dd3[9] yet, she was only Dx'ed in september.

We are intending to tell her but need advice on the best way to tackle it.

3cutedarlings · 19/12/2011 23:29

We started off by telling DD that basically her brain was wired up a little differently this sounds quite harsh, i know, but this was at her level of understanding at the time. We them moved on to give it a name, it has helped her to understand her differences slightly but as she thinks that everyone else in the world has the problem im not sure it been all that helpful. Its helped me as i no longer feel like im talking behind her back iyswim. I never really felt comfortable talking about her ASD to people, when i hadnt actually spoken to her about it.

Dawndonnathatchristmasiscoming · 19/12/2011 23:32

We told Ds2 that we suspected it before dx, and then when dx confirmed we confirmed. Same with Dd2. Dd1 we told a bit later, it was all to do with their processing abilities. Although they all have AS, they all present very differently.

voodoobarbie · 20/12/2011 08:59

ds 7 was dx two weeks ago, although we have known for a while. the only reasons i can think of for not telling are level of understanding although i have read other posts saying they havent told as it maybe used as an excuse for poor behaviour or avoidance of doing stuff. (not my opinion). it was taken out of our hands as ds heard autism dx and thought he had a deadly virus. the proff explained simplisticly how asd affected him but ds switched off wasn't interested in the least once he knew it wasn't a virus. i will sit down and explain further if he asks or if he needs more info. sorry for grammer i am using ds's ds lol

cwtch4967 · 20/12/2011 12:06

DS has a diagnosis of learning difficulties and ASD. I am very open about it but I haven't "told" ds as such because it is totally beyond his comprehension. I will tell him if and when he is able to understand.............

coff33pot · 20/12/2011 12:53

It was me who said I wouldnt tell ds at this stage should we get dx in new year.

Reasons are he is only 6 and very HF to the point that he will use it to avoid attempting anything new. As an example he already shouts its too busy! in the playground and runs away, he doesnt click with peers as he needs to be in control of games and wont play anything that he doesnt know the outcome of. He says he "cant" write. He can and will its just fine motor practice he needs.

I feel he will just not attempt anything by saying "I cant because I have Autism" he is of the type of child if you give him an answer to his problems he will just think "oh thats why ok then" and I dont want him to give up attempting things in school or home iyswim.

He doesnt care that he is different at the moment. His sisters know as I have told them as they needed to understand but no one brings it up in conversation. Now is just not the right time and every child is different. However I have told him about his sensory issues and that he needs things to help him ie mov n sit cushion so he can figit when sitting which he thinks is cool. Headphones are another but I told him in the context that we dont always want to listen to everyone elses noise. Some things cant be told with him but not all.

ArthurPewty · 20/12/2011 21:24

This reply has been deleted

Message withdrawn at poster's request.

thisisyesterday · 20/12/2011 21:52

I haven't told DS1, but he is only 6.

He doesn't need to know right now I don't think. He is fairly sensitive and I don't want him worrying that something is "wrong" with him. He just needs to carry on being himself quite frankly without the thought that he has this thing or that it makes him different,
I also don't want him to be able to use it as an excuse for any bad behaviour (although that's really a minor reason)

I am sure there will come a day when questions will arise and that is when we will tell him

JingleyBalls · 20/12/2011 21:59

DS2 is 6 and tbh he wouldn't understand. He doesn't see himself as different yet so he wouldn't benefit from knowing.

We are open about it though and he would have heard the term autism several times already, but not twigged we are talking about him.

post · 20/12/2011 22:07

We told ds2 because we knew that he must keep hearing it anyway, for example when we were explaining why he didn't speak, or later when he had meltdowns, and we didn't want the only time he heard the word to when we were 'apologising' iyswim. Even though he wasn't very hf at that time, and it did turn out that actually he'd always undstood A LOT more than we thought.
So I made a point of doing things like saying, 'this book was written by someone with autism, like you' as well, so that he wouldn't always hear about that part of who he is in negative terms.
Now it's his excuse for all sorts, which we have to watch out for!

AmberLeaf · 20/12/2011 22:20

I couldnt not tell DS [9] he asked lots of questions during the DX process.

He is/was aware of his differences and the knowledge of his DX helped him understand why

I can understand there not being a point in telling a very low functioning child if their understanding is limited.

I dont understand why parents dont tell if the child is HF.

I dont think my son 'uses' his DX, I think if he has problems with some things [which of course he does] its because he is autistic.

I think its possible that a child not knowing they are autistic but yet still having to deal with the issues it presents would actually be quite damaging to their self esteem.

I think sometimes a parent needs to let the DX 'sink in' and come to terms with it themselves before they are ready to tell the child and then deal with possible subsequent questions that it may bring up from the child.

I have read posts from adults with autism on another forum and they are very much in favour of the child concerned knowing about their diagnosis.

post · 21/12/2011 00:02

Absolutely, of course, there are lots of things that ds2 finds hard because of his autism, and I'm so glad we've given him some framework to understand why some things are harder for him. I think I put it badly; he also sometimes says it's his reason for, for example, being theonly person who won't put his plate in the dishwasher, and whereas the determination he has to stick to that is probably not unrelated to his gorgeous autistic single-mindedness, the reason he doesn't want to do it in the first place is, I think, and of course I'm always only guessing, because I'm not in his head, more like the same reasons his nt (and close in age) brother doesn't always want to; he'd rather I did it. But moaning 'no, I can't, I'm autistic is worth a try.

And I LOVE that he's being a bit of an arsey teenager and trying it on a bit, dh and I grin With excitement when he's out of the room at the 'typical-ness' of it.

I think you're right about parents sometimes needing to get comfortable before they feel ready to talk about a dx. It's maybe another stage of it being 'real'.

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