When to seek diagnosis (high-functioning ASD with avoidance traits)

[soundsystem]

I suspect my almost-4-year old daughter is on the spectrum. Mostly because I am, and she's exactly like I was as a child. And observing her with other children her age she seems... different. But I don't have much other comparison, as she's my eldest.

I'm unsure about seeking diagnosis as I suspect we'll be dismissed as it's more differences than difficulties at the moment; she attends pre-school and is "well-behaved" and seems to enjoy herself. But at the same time, I understand what a slog the road to a diagnosis can be, and then I feel maybe better to start it off now, so she has support later on if/when she needs it.

I've only recently become aware of PDA as a thing, and reading up on it it describes her to a T. Looking at strategies to deal with it, I've realised that they are all the things I do naturally with her, possibly because I also have these traits. So I suppose I may not have fully realised there's an issue...

I'm not really sure what I'm asking, to be honest, but if anyone has any words of wisdom/experience to share I'd really appreciate it.

If you're diagnosed, it may speed up her dx. Otherwise, the NHS diagnostic pathway can be a very long one in terms of waiting lists and time elapsed between further appointments as for young children they sometimes adopt the 'wait and see' approach. Start it now.

Our daughter was diagnosed in the past year, at age 12. We had to go through a long questionnaire, and most of the questions concerned her life as a pre-schooler. We struggled to recall her life then in as much detail as we needed to & spent ages beforehand, going over family videos to trigger our memories. For example, there were question about language development that we couldn't recall very well; if/how she interacted with other children; how/whether she gestured (pointing etc). The point being that maybe around 4 years old is the perfect age for those doing the diagnosis to ask you about it and observe. They won't see the fact that autism isn't causing her difficulties as a reason not to identify autism. There's no reason, after all, why it should cause difficulties at this age.

The autism centre where we went don't really acknowledge PDA so didn't write it into the diagnosis, even though our daughter also shows those traits. Concerning PDA specifically, I wish we had recognised it much earlier - it would have given us all precious insights in how to raise our daughter, and saved her much unnecessary stress.

It could be that your daughter gets on brilliantly at primary school and you never need to mention it to the staff. But equally wouldn't it be good to have the diagnosis up your sleeve for if you do want to disclose it? That's basically why we took the step of going for a diagnosis: as our daughter was entering secondary school, we thought that if a time comes when she's finding things difficult, the school would (rightly) expect us to have gone through that process, rather than simply asking them to accommodate her solely on the basis of our say-so.

I would start. DD is 4, has a Dx - also very similar to me. We had no problem getting a Dx for her despite her not really having any "problems". They saw the traits (and family history of me having struggled socially at school) and diagnosed accordingly.

We naturally parent in a very PDAish way, and I can see that things may get harder rather than easier with time (like your DD ours is well behaved and does well at school - but e.g. she already is not joining in with certain things - even things she has enjoyed before - and I worry that it's an anxiety/control thing that could bed in and stop her taking part and enjoying those things in the future, so I'm glad we're aware of it now).

A lot depends on how helpful the school is. If they "get" her and can manage any issues hand in hand with you, a Dx may be less important. But you never know when things can change. So I'm glad we've got our Dx to "back us up" if school (or a future school) ever become less helpful.

Thank you so much for your responses. I think you've given me the push to get on with it - thank you.

Blank I am diagnosed, so that's really useful to know.

Archery some great points, thanks. Yes, I think that's exactly how I feel, that if she might have difficulties down the line then I'd like to have the diagnosis, rather than have to go through the process then.

LightTripper That's really reassuring, thanks.

Yes start now. With a family member already diagnosed you’ll be taken more seriously and face fewer delays than those presenting for the first time. Also the paediatric route often uses SALTs in the team and their input seems much more helpful than psych opinion if you wait and have to go through CAMHS. Call your local Speech & Language dept and find out if you can self refer to them for a Social & Communication Assessment. I remember wondering if we were doing the right thing and it was absolutely. We dithered until he was 7 and were lucky the SALT team knew us and helped us through their route .... I think we’d have been left in limbo by school and CAMHS otherwise. Best of luck.