When to have the chat?

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Not *that* chat. The other one. The autism one.

My daughter exhibits many of the same ASD traits that I do, and some that I don't, in ways that are probably more extreme than me. She's coming up to 10 years old.

We've been going through the process of having her assessed for ASD for years now. It's taking forever. We don't have a diagnosis yet and we were pretty much holding off talking to her about autism until we did. But she's growing up.

She's obviously very aware that she struggles with stuff that her friends don't struggle with. She has special clothing needs that she doesn't want her classmates to know about and it causes problems like when the class goes swimming or they've got an overnight school trip coming up. The clothes are the tip of the iceberg really.

We talk about the sort of difficulties we both have, I tell her about things that I struggled with at school and how I coped and she tells me about stuff that's going on with here. We discuss a lot of stuff that would fall into the ASD bucket of difficulties.

But we've never said to her, "Look, this is probably what's going on - you're autistic and that means you're experiencing the world a bit differently to other people."

I mean, she knows she's different and she occasionally seems like she's giving herself a hard time about it. I know what that's like and it breaks my heart a bit.

But I'm still cautious about having the autism talk.

There was a thread somewhere else here about whether you would rather have known earlier or not. I've been thinking about that a lot. If she's autistic she has a right to know, but we don't have a diagnosis of autism yet and I don't want to tell her that and then have a doctor say she isn't. Another part of me knows it doesn't really matter what a doctor says about her, I know she's on the spectrum.

I guess I'm just thinking aloud here. Unless anyone has any advice? When did you talk to your kids about it?

My youngest is 13. He has signs of being on the spectrum. But not as many as his older brother. Autism is one thing. A diagnosis is another. My sister’s son has lots of symptoms of ASD but never got a DX. My sister would hide things like his delayed speech growing up so people wouldn’t think he was strange. It is a mixed bag. Knowing might help but might make DS13 feel even more strange and “less than”.
Plus he is him no matter what dx or no dx.

YMMV (your mileage may vary)

I think it sounds like you're great parents, Duck. I like the way you're aware of her struggles and you can identify with them by sharing your own. In my opinion that can continue, even if you don't use a label. You can say that she's not alone because there are many people on the planet who find their clothes uncomfortable for any number of reasons, just like yourself. You could say that you thought you were alone in that regard too, until you found out you were autistic.

If you use that word you could say maybe she fits under that umbrella too, or maybe not, but regardless of any words or identifiers you know she has a sensitive nervous system. Ask if she has any questions about you, or your experiences. That might get her talking with an "OMG Me too!" type of reaction, where she's identifying with you instead of you saying that you identify with her. Then she might be curious enough to ask more questions, and you could further the topic then.

A diagnosis only helps if it brings resources. I've been saying that for a long time now.

It helped me psychologically, resources or not.
I wanted to understand myself.
It sounds like Duck's daughter is the same type of thinker.

I was referred for a few services (OT, PT, SLP), but I didn't need a diagnosis for them.
Anyone can request support from an OT, SLP, etc.

It sounds like you are already having the talk(s) with her. The only thong missing is the label. You may have to choose if using a label would be helpful or not.

Explaining things in terms of a sightly divergent neurology can be handled like explaining how some people are taller than others.

Thanks everyone who thought about and responded to this, I really appreciate it.

You've helped me to see that in fact we've always been talking about autism, we just haven't put that label on it yet.

Her school is aware of our concerns and already makes some allowances for her but beyond that we're not expecting much in the way of resources to be available.

It's more about providing a framework for her to understand herself and prevent her concluding that the challenges she faces aren't due to some character deficiency and that she isn't alone.

Update. I got a letter today from the health authority saying that as waiting times for analysis have gone above 2 years they're going to start paying for people to do it through private healthcare services so we're thing that route which means we may get an analysis in a couple of months.

I wish that my mum would have had the chat with me when I was 10.

We had the chat a few months ago at about 10 and a half. He was shocked. I don’t know. Middle school is gonna be brutal.

Good luck with that!

Have they set a date yet?

^Not yet. Another waiting list, just hopefully shorter than the one we we're already on...

We included my son in all our discussions about evaluation, from entering the process to conclusion, but in pretty simple and labeless language. Once we had the label, we were able to basically remind him of how we’d been trying to find out why he struggled with some things, and to understand how his brain worked, and add that, well, there is a name for these differences: autism.

If my mum would have told me when I was 10, I would have done a better job keeping my special interests to myself, therefore I wouldn't have been yelled at as much. I can still hear the yelling in my head to this day. I would have saved myself a whole bunch of grief when I was in Grade 8.

You're doing a great job.

Well we have a date for the first part of her assessment. Finally. Over two years since we first requested one. End of May.

Wow! Congratulations. How does your daughter feel about it?