How and when to tell DD about ASD diagnosis

[meganorks]

My DD was diagnosed about a year ago but as yet we have not spoken to her about it. Largely she gets on ok but I think she is starting to notice she behaves differently to other children.

She will move to junior school in September and I think she is a little anxious about it although excited too. I am also anxious about it as most years we go through a bit of a pattern where things are fine to start with, then we have a period where she struggles at school, then she settles down again and does well. So I am obviously concerned that this will be aplified with a bigger move to juniors.

I have been wondering if it would be best talking to her about her ASD now. But on the other hand I am concerned that it might just give her another thing to worry about. And then at a more basic level I don't really know what to say anyway! And I don't want her to use it as an excuse for behavior she knows is wrong.

In terms of her ASD I think she would be termed as high functioning. Acedemically she gets on very well but some of her behaviour is different to her peers and she doesn't read other peoples emotions well. She gets support from school and we will be meeting next month to discuss the move to juniors. I just feel that we should maybe be talking to her about it but I'm not sure where to start.

Any advice?

I think the earlier you tell a child the better as then there is no big announcement then when they are older - they will just grow up with an understanding that there is a reason why they are a bit different and it is not that they are 'bad' or 'weird'. They are going to notice they are a bit different anyway and waiting until they are older just makes it seem like more of a big deal.

I told my son when he was 6. For a few weeks beforehand I pointed out how we are all a bit different from each other. I also pointed out how some people find somethings easier or harder than others. Then I just casually mentioned one day that his brain works a bit different to other children in his class as he has autism. I told him it makes some things easier for him (like his imagination and exceptional vocabulary) but it makes somethings more challenging (like doing things he doesn't want to do and controlling his emotions). He was happy to hear he had autism as he likes the idea of being different.

My son is now 8 and him being aware of his autism has just been a positive thing in his case. On the occassions when he gets upset at school we can talk openly about why exactly he struggles sometimes and what strategies he can use to manage. This is good for his self esteem as he doesn't start putting himself down or see himself as a badly behaved child. He regards himself as 'good'. He has never used having autism as an excuse to behave badly.

My son likes this video about autism that someone on here recomended
m.youtube.com/watch?v=ejpWWP1HNGQ

There are lots of books out there to help. I haven’t read it, but a friend and her daughter really liked “I am an Aspie Girl”.

I’ve been really up front with my DS the whole time. We talk about how people’s brains work and what makes him different and what makes him him. It’s useful for children to be as self-aware as possible, and to know how to play to their strengths as well as how to accept their limitations.

You do need to think very carefully about your own views on your DDs diagnosis and make sure that you are not going to pass on any negative emotions or judgment about it. Speaking as an adult with autism, I think that I’m very lucky that my parents embraced all the good qualities that having ASD brings and never let me think that my inability to conform or “be normal” was in any way a bad thing.

I like the idea of a book as she loves reading so I will look at 'I am an aspie'. Although I don't think they use the term aspergers now, so I'm not sure if that would be confusing? I just had a google and it looks like there are lots of books out there, so I guess its just a case of making sure it is appropriate and relevant to her.

I have watched the video too which is great so I will have a look again and see if she might like that.

We have talked a little about people being different and her reactions to things being different to her peers. We talk about some people finding certain things easier than others. We could maybe be a little better at embracing the ways it makes her good at certain things. Although she does quite like to 'boast' about things on her own, so I would worry about her maybe annoying her friends with that! By boasting I mean she will repeat herself lots about how she achieved something: 'I am really good at .... aren't I? Did I do it first time? And no one else could do it could they?....

Sounds like she is reassuring herself more than boasting exactly: perhaps because she can sense that she struggles at other things, so she needs the affirmation of the things she is good at?

In which case talking about things she is good at sounds like a good strategy as it's clearly one she is comfortable with and kind of stumbled on herself.

You could have a separate discussion with her about how it's kinder not to talk too much about things you find easy in front of people who find it harder? Maybe use some examples where the same has happened to her? But she can always say it to you at home!

Our DD just got her dx and is only just 4, so we are currently just at the stage of talking a lot about difference and how important it is (how boring it would be if we were all the same, how teams work better when everybody is good at different things, etc.) and also about how mistakes are important and not something to be sad about, but something you can learn from. I agree it might be good to talk about some of that (which I'm sure you do anyway to some extent!) in the lead up to any more detailed discussion about her brain working differently. You could do that while you read some candidate books?

If you look up "Purple Ella" on YouTube she also has three videos that are interviews with her children (two on the spectrum - a boy aged around 10 and a girl about 5 I think and their neurotypical brother who is the middle child). Might be worth a look to see if she might like those? They talk about differences, strengths, struggles and sensory stuff and it's all very positive and not "heavy".

I think a lot of the terminology is moving away from "Aspie" but a lot of the relevant books in print will still use it for a few years yet, so we can't afford to be too puritanical about it.

My son also likes boasting about his good points. He understands now that its not right to brag n front of others but he can talk about how great he is at home with us as much as he likes.

I made a book for dd, who is a great reader. And i largely based it on stuff that a kind mum passed to me and also a great little book from NAS entitled something like Talking about Diagnosis or something.

The great thing about making a photo book is that you can give it your child for them to go over. It's less prone to misinterpretation. It also makes you scrutinise how you frame autism. I found a lot of books and videos much too negative. There's a lot of 'disorder' out there still, and I'm trying to eliminate that shit from dd's view of herself.

It is roughly:me, my family, things that are great about me, one special thing about me is I am autistic, autistic people have amazing brains, I can do xxx, some things are harder but i am making great strides, egs. Autistic people have invented new technology, types of music, art. Famous autistic people include.... what will I be when I grow up?
But flesh it out with her interests and skills, obvs.

Sorry, should add that we did that about 5/6 And it was a massive success. She's really proud of her autism. And she's really able to identify that situations are in her terminology "not autism friendly" rather than her being in any way at fault, which is a win for me.

I'm stuck with this too. Ds is 6. Very high functioning in some way but I don't think he would be prepared to listen to anything about emotions, How his brain works etc because he is totally averse to discussing anything about him or about emotion. Really don't know where to start !!

As mentioned above the book “autism: taking about a diagnosis” by Rachel pike is a big help. It’s suggests ways of talking to your child and materials you can make.

There’s lots of books on the market, but they are unlikely to work for your child’s version of autism - as every child presents differently! We have “my superhero brain” (I think that’s what it’s called) but it includes lots of sensory stuff that is less relevant to DS.