Has anyone had ASD concerns but not got a diagnosis?

[Namechangenurseryconcerns]

Either because assessment didn't yield one or because you didn't want to 'label' your child.
I have some concerns over DD (7) and am in 2 minds as to whether to persue them.
No concerns from school but they would probably be supportive if necessary.

We wondered about DS1, he was diagnosed with severe dyslexia aged 8. I was thinking about ASD but community pard said not. For Uni he was diagnosed with dyspraxia as well. I think if we'd raised the ASD question he would have 'got' that too.

He knows how he is, which is enough for him to manage himself and his preferences (only eating at home/restaurants, never at any kind of informal gathering). His difficulties are not profound and could be explained by dyspraxia/severe dyslexia or we would have pushed a bit harder.
He's very literal, struggles with wordplay. Takes everything at face value. Prefers not to go anywhere or do anything he hasn't done before.

However in the last two years he has worked in a kitchen while at Uni and now eats custard and cream, has managed a shared bathroom in his house, and drives an automatic. I'm a very proud mum.

That's great for him (and you!) Well done!

We have concerns about DS (7). He shows traits of ASD, Dyslexia, Dyspraxia and Sensory processing although have no diagnosis of any of these yet.

Saw a NHS paed who wouldn't entertain the idea as DS smiled (completely going against NICE guidelines) and I think put it down to me being a neurotic middle class mother! We are now trying to go private (and are in the fortunate position of being able to do so). School have concerns about his behaviour and anxiety.

We are pursuing diagnosis because it is really affecting his (enjoyment of) life, makes him and other people around him unsafe and we are worried about his school placement breaking down etc. We are hoping diagnosis gives us and him a better understanding of himself and increased self-confidence, legal protection, appropriate help at school, amongst other things.

It is hard though and I am not sure if he wasn't in such a bad place e.g. with anxiety and poor behaviour at school whether we would pursue. I think in an ideal world I would say yes of course (not only for him now but for the future too) but with the difficulties of getting a diagnosis on the NHS, if I wasn't so desperate to get him help I'm not sure I would be pursuing this.

School and GP referred ds age 7 to paed for initial assessment. They did some profiling and said he seems to function well so the ASD team will probably reject the referral. Which they did.
As ds started not coping with certain things at school and elsewhere, and CAMHS rejected him because he didn't have a ASD diagnosis. I went to the OT drop-in clinic as the only option, and they said may as well bring him in and have a bit of a chat.
Which I did, and it was fine until ds had the most amazing meltdown he'd had in about a year.

They said they'd support a re-referral, as well as referring to a dietician, and eventually the dietician requested a re-referral too and he got assessed 18 months after the original rejection. He was coping very well at school and I was quite surprised he got the ASD diagnosis by then (they also said it was obviously inherited from both parents!)

Now considering if going back to CAMHS would be good, as he's coping but clearly struggling with some things, so at least the disagnosis has given us that option.

The eye contact one is the one that gets me. All my ASD kid friends actually gaze at you while listening. Maybe because they are relaxed around me. A lot of the time they aren't listening, and aren't looking, mind.
My DS really doesn't listen to the room. He'll ask 'when are we going to grandma's?', when there is a pause in the conversation the rest of us have been having about 'when we are leaving for Grandma's'.

See I worry myself that I am a middle class neurotic mother! I'm certain that others would see her as spoiled and immature. Which is fine, if she is-I can get tougher. But I worry that if t is ASD then tough isn't necessarily the right approach and I end up going round in circles!

Getting a diagnosis for DD opened the doors to better support for her. I won't pretend that has been easy to get but it would have been a lot harder without the diagnosis. She was similar age when she was given her diagnosis and I do not regret doing so. She is 12 now and her issues have become more evident as time has gone on and her peers have matured and I am glad for the support she has now that she didn't need as much when a bit younger.

If you haven't already read it the Tony Attwood book The Complete Guide to Asperger's Syndrome is really helpful. There is a section in there about autism/aspergers in girls and the differences between girls and boys - girls develop a lot more strategies to hide their difficulties and so a struggle/stress is not always as evident with them. Overall the book is very informative.

Shamelessly place marking to see what replies you get as I'm in a similar situation with DD