DCs diagnosed with ASD/ADHD much later

[Obviouslynotinhere]

Hi all,

I have a strong suspicion that DD (6 in Oct) may have some form of ND. We had absolutely no suspicions until she started school. But I can see now there are things that make her different from a typical 5 yo.

I know she won't meet a criteria for dx at this time as she's not really struggling with anything yet but I'd like to find out from other people experiences who might have had the same history (child who hit all milestones on time, good talker from early age, no meltdowns, setting into school really well, mostly very social).

Her 'quirks' are:

• Hand flapping a lot whilst pulling strange grimaces

• talks A LOT ( wherever we go absolutely everyone comments on how chatty she is). Unfortunately a lot of this talk is irrelevant, she talks about her cat A LOT.

• when she is supposed to walk, she never walks in a 'normal way', she sort of jumps ahead with her head down, whilst flapping...all the time. As if she just doesn't know how to walk. This is something quite recent.

• jumps a lot, mainly with excitement.

• she seems a bit more immature than girls her age, as if she hasn't matured since she was 4. This is becoming more obvious at school and a lot of her classmates don't like playing with her.

However she's quite mature emotionally, she'd not make a fuss about little things and I don't think she's ever cried as school, even if she's hurt or someone's been mean.

• doesn't like sudden or very loud noises, hates toile flushers, she is ok with regular noise for instance in a soft play or a busy shopping centre she's absolutely fine.

• chews her hair/clothes/soft toys.

What worries me the most is her regression in her social skills. She had so many friends since she was 3 and she is still seeking friendships, always plays with other children in playgrounds but she's not made any friends at school, some of the girls in her class refuse to even hold hands with her (when they go somewhere with partners) and so plays a lot on her own. School has expressed concern about it.

I know a lot of 5 year olds have quirks and little odd things but my gut is telling there is something we need to keep and eye on as she may start struggling later.

Anyone has any advice?

Ds was diagnosed with ASD at 13yo, having had years of being told "he's a summer boy-he'll grow out of it."
He was relieved at the diagnosis, although his first comment was "now I have an excuse to be antisocial", but it has given him permission, if you like to look at it that way, to at times do things that make him more comfortable. For example if he's going somewhere new and is unsure, he'll wear a hoodie, zipped up to his nose and hood pulled down so just his eyes are showing. He looks a bit of a thug like that, but it's a protection. When he feels comfortable, it comes off again.

Yes, he's quirky, but actually he has a stronger group of friends round him (all quirky too!) than the girls had and although I wouldn't say he enjoys school, he's never had an problems, and has just come out with a good set of GCSEs.

My children are currently awaiting or inthe process of assessments. I have dyspraxia and could see it sooooo clearly in dc1 from the beginning, as it was familiar. It took until half way through reception for dc2 to realise he is almost certainly autistic and the evidence had been there all along. It can be hard to notice if you don't have it yourself, or have been masking undiagnosed your whole life. We will need to pay for his assessment, as the nhs waiting list os now so long it's pretty much impossible. Unfortunately £1900 is cheaper than anything I have found around here. It's a massive outlay for us, but can't wait 4-8 years as so much damage would be done in that time.

I think the problem is that a lot of that is also seen in children who aren’t ND. I think the paediatrician is right, at the moment it’s not clear whether she needs an assessment. She’s at a small private school, she hasn’t been there long. I’d raise concerns and ask them to monitor her. They have a small class so the teacher should be able to do this with input from the senco. If you go for an nhs assessment You need to show traits in at least 2 settings so you will need some evidence from school. Some of the private companies are really not robust enough. There’s no reason you can’t look into ND parenting methods and support in the meantime, the actual diagnosis doesn’t really change much in practical terms

At 7 I would have said my DD didn't have signs of ASD - she wouldn't have ticked those boxes either but lockdown and transition to secondary made it so much harder for her to mask.

Have you considered Right to Choose? There's info about it here - on ADHD UK website but relevant for autism too:
https://adhduk.co.uk/right-to-choose/