Think I've mucked up explaining DDs diagnosis to her - any advice please

[Mixingupmywords]

I told my DD (10) about her ASD diagnosis today. She was very brave but also very upset. I tried to keep it short so as to not overload her with information - as she hates this - hoping to discuss it more when she is ready. But I'm not sure I did a good job.

I tried to focus it on how it explains why she finds some things more tricky but that she has great strengths too. But she asked me directly if it was a disability and I said yes. She has really latched on to this and I'm worried this makes it all very negative for her when I was hoping a diagnosis would bring us all more understanding, knowledge and acceptance. (I know it may take some time to process all this to get to that point)

Any advice would be very helpful - either things to say, resources to share or just how to support her with this. Thank you so much x

I think I would show her some examples of other people who have autism, people she may know such as Elon Musk, The guy who created Pokemon and Tim Burton and also maybe buy her a book about it.

There are apparently some good books for kids to explain their diagnosis. I've no recommendations though unfortunately.

There are also some lovely autism 'activists' on Instagram that she may like to see on your phone. The hashtag #actuallyautistic will bring them up and you can show her what young adults and teens with autism are up to.

I just drip feed it to DD2 (similar age). Have books around the house with strong neurodiverse female characters in for her and I'm open about how bits of my brain find things harder or work better at things because of my own diagnosis. We talk about ways to manage when things are feeling too loud or bright or whatever and try to work around them.

I've tried to leave every one of her various diagnoses as something matter of fact and not some big conversation to have at some point.

And yes, it's a disability in that you're walking around with a brain tuned to different settings than the world is generally set up for (I kind of feel like a TV where the contrast's whacked up to the point where everyone's a bit orange and off-kilter) but we don't do wallowing - we do "OK what do we need to do to get this to work out"

Thanks for both your answers these are very helpful. I think finding some good books by neurodiverse writers would be good.

@CoffeeWithCheese I think the drip drip approach is what I'm going to do. Dd definitely gets on better with this. It's nice that you are able to advise you DD and work through things together with her - that must be really helpful for her. I'm NT so won't be able to support her in the same way - though I will try my best.

I hope she's doing okay.

As well as the positive stuff about understanding and acceptance and successful autistic people, I think it's important to acknowledge the negative, and validate her distress at discovering her difficulties are never going to go away completely and she has a lifelong disability. It's a distressing thing to find out.

For adult-diagnosed people like me, we already knew before diagnosis that we are who we are and can't change, sought diagnosis as an explanation of sorts, and the diagnosis can feel like a relief. Even then, it took me a few years to really understand how I felt about the diagnosis.

For a kid who may have hoped that things would get better, hearing they have an ASD diagnosis could sound like a life sentence. So while there's definitely ways to look at things from a more encouraging angle, build confidence and talk about different strengths, I think it has to start from an understanding that for her this is massive news that has come as a shock, and it's okay to feel upset about finding out you're disabled.

It might take her longer than you'd expect to move past it, too, especially if it feels unjust to her. Some of us can… get mentally stuck on things sometimes, especially something that feels unfair.

@FurryDandelionSeekingMissile thank you so much for this insight it is incredibly helpful. I think you've really articulated what is going on for her. She asked several times if she will grow out of it and recently has been saying is my autism why I find this hard and nearly always the answer is yes at least partly. She has also asked what school will do about what she finds hard and reality is there will be some adjustments and hopefully more understanding but probably not much else. There will be no sudden fix.
So yes you right it is unrealistic for me to think she will suddenly find it useful and give her acceptance. Thanks again for helping me see it from her eyes.

It must be so hard for you to see her go through this, but I don't think you mucked the explanation up — it sounds like finding this out was always going to be difficult for her, no matter how carefully you managed the amount and type of information. I hope that the school adjustments and understanding that she has ASD will be helpful. She's already got a mum (or maybe you're a dad) who's on her side and gets her, which is the best possible advantage.

No she won't grow out of it but as you grow up you develop strategies to manage better and learn more how your brain works.

And yes it is a bit shit.

Start telling her now about puberty. Lots of autistic girls find it difficult to deal with. Lots of autistic girls don't fit the model of girliness for NT. This is normal for autistic girls.

Autistic women can be parents and can work. (Maybe not at the same time though) Can go to Uni, can do stuff but it can be harder work but knowing you are autistic gets you more support, legal protection, and helps you adjust your expectations and not get poorly trying to do too much.

My conversation with ds went brilliantly - he was fascinated by the concept, I managed to phrase everything positively, we had a long and loving conversation. He then blocked the entire discussion out and couldn’t remember anything at all. He does that with things he finds uncomfortable or cannot process - there’s an entire year of primary school missing too.

All I’m saying is that there’s no guaranteed right way to handle this - they process it in their own way. Your dd is focusing on one part for now and you just need to be there for her as she works it all out (and it very much sounds like you are)

Thanks for the replies very helpful. Had a lovely chat with DD today. At school she had learnt about Greta Thunberg and they mentioned she was autistic - DD was shocked and also delighted at what she has achieved given her autism. We also looked up a number of other autistic famous people and it was really positive (@ofwarren thanks for the suggestion). Particularly when DD said "Lots of autistic people are amazing, we are pretty amazing aren't we." 💐☺️

Hi @Mixingupmywords, you and your DD might like the series of books by Libby Scott and Rebecca Westcott: Ways To Be Me, Can You See Me?, Can You Hear Me? and All The Pieces of Me. The main character is an autistic pre-teen (as is Libby, one of the authors) and the first book (chronologically - Can You See Me? was written first, but Ways To Be Me is set first) deals with her diagnosis. They're books I wish I'd had when I was your DD's age.

You're doing fine with it - it's not some one-way ticket to desolation and my diagnosis is actually one of the greatest things that happened to me - I'm working now as an openly autistic professional and I really do use it as a asset and an addition to my skillset.