I suspect my DD has ASD

[Cloudeightandnine]

I have a strong suspicion my 6.5 DD has ASD. This has become more obvious since she turned 5 yo.

She had a totally typical development, hit all milestones on time, early speech, very social, very confident. Always settled in nurseries/school really well and generally is happy to be left alone anywhere. Great eye contact, very smiley, very lively, easy going, a very happy girl.

From the age of 3 she started flapping her hands with excitement and this lasted until about 7, 8 months ago. She stopped it completely now. However I noticed recently she toe walks a LOT around the house, she's never done that as a toddler.
When we walk down the street she gallops in front of me with head down or runs, never walks. Again this started when she was approaching 5.
Recently she seems bothered by other children's behaviour. For instance she comes home and tells us about all the 'bad behaviour' in her class and how much she dislikes it and, while I do agree there are a few hyper girls who create a bit of drama in the class, I don't feel like she should be so impacted by it. It's a class of 15 girls and most girls are fine.

We were in the library the other day and there was a very cute toddler girl with her nanny sitting about 5 ft away from us. The little toddler was making excited noises at the book her nanny was reading and DD said 'I don't like that toddler shouting in my ear'. The toddler was nowhere near her ear and wasn't even that loud. So that made me realise she's got very low tolerance for people making any kind of noise. She's fine in busy soft plays or trampoline parks which even I find very noisy, which is odd.

I can also see she is starting to struggle socially. She's got one best friend in her class but I don't think anyone else likes her or is interested in playing with her. She has other friends in the school but the majority of the girls are older and they are like older sisters to her. Her speech is not great either, I don't think she is as articulate as she used to be when she was younger.

Another thing is, despite being very capable academically, she is very slow and never finishes her work at school. I believe it's due to losing concentration, she needs to be prompted to carry on.

We are devastated to see her declining. It took us by surprise as we had no obvious signs before. We've spoken to NHS but they refuse to put her on a waiting list as 'she's not struggling' from their point of view.

Can anyone relate to this and has any advice? I don't know how to help her or where to turn to.

Maybe it's just her personality. What would you hope to achieve from getting a formal diagnosis? I don't mean that in a rude way BTW, not at all.

She could be autistic or it might just be her personality.

The thing is, a diagnosis doesn't immediately mean support, there have to be support needs that you want to address with an ehcp. Obviously a diagnosis does have meaning in terms of identity and being able to understand oneself. My son has what would be described as high support needs and we barely get anything, so children who aren't struggling as obviously will be so deprioritised. Much of it is about parent education, reading up on how to be a better parent to an autistic child, understanding behaviour and where to put supports in place.

I don't think there's a simple answer.

She sounds very similar to my DD... No concerns as a toddler, bit quirky perhaps but hit all milestones and was sociable etc. As she got older (around 6 I would say) her differences to her her peers became more noticeable and I started to have concerns but as the school were not supportive this got nowhere.

When she was 8.5, her younger brother was diagnosed with ASD so I self referred her even though her school were still not supportive of this.
At 9 (and on the waiting list for an assessment) the school started to see "issues" and placed her on their SEN register.
At 10 she was diagnosed with ASD.

Before her diagnosis we just treated her as if she already had one in order to help her so in that respect the diagnosis has had no impact on every day life.

As as the poster above stated, you don't automatically get support, normally you're signposted to your local charity.
However, the "power" of the diagnosis is that, especially as she transitions into secondary school, they will have to take this into account and make sure reasonable adjustments are put in place.

As the previous poster said, it could just be her personality, but if you have concerns, I would keep on pushing for an assessment.
In the meantime you can adjust your behaviour in order to help her deal with situations in which she struggles. You don't have to label her "ASD" or bring lots of attention to it and if she turns out not to have ASD all you've done is help her in areas that she struggles.
For example - Lots of children struggle with noise. Maybe get her some ear defenders so if she's at the library and trying to read, she wont be disturbed by others.

Reach out to your local autism charity, they may be able to put you on one of their parenting workshops or put you in touch with a support group who can offer advise.

I would go for an assessment, because what you describe could be autism but it could also be AD(H)D which presents differently in girls, or it could be sensory processing disorder, or as a PP said just personality, and you will best know how to support her when you know more.

When you say you've spoken to the NHS, do you mean your GP? One way to go would be to ask for a referral to a developmental paediatrician, based on your concerns around toe walking and hand flapping.

Alongside that, speak to your DD's school, listing all the concerns you've mentioned here. Ask for an appointment with the class teacher and SENco and write down everything you want to say.

She may or may not be autistic but the things you're noticing aren't nothing. Don't be afraid to raise your concerns now even though she's still young. Waiting lists are long so the earlier you get her in the system the better! Meanwhile there are plenty of resources for parenting ASD children that you can use now to help with things like concentration and sensory issues which will help her even if she's not diagnosed. Good luck!

The OPs DD sounds much like my DS. And he was doing ok in school, no worries academically, though I'd always had concerns about him socially. Then he wasn't ok anymore, and he ended up refusing to go to school at all. He was referred for assessment, with a 26month waiting list, which would have caused difficulties for secondary as without a diagnosis he couldn't be put forward for the specialist autism base.

Thankfully everyone put a huge amount of work in to get him assessed sooner so in the end we were only waiting a bit over a year and once we had the diagnosis he was put forward for the specialist unit and we're waiting to hear the outcome of that.

I do think that if its possible, getting a diagnosis sooner is better. It shouldn't get to the point of EBSA if that can be at all avoided.

Thank you everyone for taking the time to share your experience and advice.

Sorry I've had a few rough days and didn't get a chance to reply.

Not sure what I'm looking for really, just seeing DD decline in terms of communication and socially makes me very anxious and I just don't know how to help or what to do. And I don't understand what's happening and why and what the future holds. I cannot relate to this either because I had a different upbringing and a different personality as a child. I used to be quite shy but had lots of friends and I was quite good at standing my ground. DD seems quite naive and immature for her age, it's like she's still 4 yo.

For those with kids who got diagnosed later, how are your DCs now, socially and academically?