Such a long wait for Autism assessment

[AnnonymousMum]

Hi, my 6.5yo was referred for an autism assessment in year 1. She's now in year 2 and she hasn't been 'triaged' yet meaning her case hasn't even been accepted into the 30+ month waiting list.

I'm getting so anxious because I keep flip flopping from worrying that she needs more support, to worrying that I'm being overdramatic and imagining things.

I feel guilty accessing support for SEN but also guilty that I'm not meeting her needs.

She's a bright kid and she's happy and doing well in school, but she's definitely quirky. She flaps her hands a lot and makes unusual noises, she can ignore people at times and has big meltdowns. She struggles to know how she is feeling.

I worry that she'll struggle socially as she (and friends) mature but I don't know what I should be doing now to help her as so far she is very happy and confident being her own unique self!

I just wish someone could tell me for sure what's going on in her wonderful little head and help me to help her.

A diagnosis won’t necessarily result in more support, many are diagnosed and discharged straight away.

What type of support are you thinking of? Support is based on needs, so you don’t need a diagnosis for that. You don’t have to feel guilty. School should be providing support and you can apply for an EHCP if you think one is necessary.
Are the school providing emotional literacy support and social skills support? In some areas you can self refer to SALT, if you can’t in your area you can ask the GP to. Same for OT (sensory OT isn’t commissioned in all ICBs, but its still worth a referral).

Scope have a mentoring service for those awaiting assessment.

Ross Greene’s The Explosive Child book is worth reading and The Out of Sync Child. Yvonne Newbold’s resources can be helpful for managing behaviour.

To add to what pp said, we waited for a diagnosis and then found out afterwards that some of our local support services will accept you if your child is on the waiting list for an assessment. They know there's a long wait!

Quite a few places do things like advice or support sessions for parents, which could give you some ideas for supporting your dd.

We are awaiting diagnosis process too. It's very long and from what a friend of mine has told me it's not a solution as such. Friends overseas seem to have better support for their SEN children. Here in the UK we are very limited.

My dd is very similar to yours and she's 9 now. She really struggling socially, I'm not sure how the diagnosis will help but it might be good to speak to school about it.

You can always go for a private assessment if really concerned, you would probably be offered better support after assessment than you will get when you go with NHS. You normally just walk away with a diagnosis but no support offered, however the point should be to identify needs and offer support, not just to give a ‘label’.
The system does not really work sadly.

If she does well in school and gets meaningful person centred support, maybe just stay on the waiting list and don’t spend money on private assessment☺️ Just don’t give up half way through the process. She might be doing well now, but children change as they grow up and their needs will be changing too. You will need and EHCP in place for her to get support throughout her journey in education.

ps. Very visible ‘ autistic’ repetitive behaviour i.e., flapping is normally what parents are mostly worried about as it makes autism very obvious for the public eye. That is the behaviour least worrying. It has a function. Just love her for who she is and always be proud. All children, neurotypical or neurodiverse, develop in their own pace.

Would getting an assessment and support through Caudwell Children be an option @AnnonymousMum? It's much quicker, usually 12 weeks.

I understand, it's so frustrating. Ds2 has had autism symptoms from aged 2 but as he was so different from ds1 who has autism, we didn't pursue an autism diagnosis until he was 11. Then covid happened and somewhere along the line we were told he was too old for an assessment. Then we were told new rules meant he wasn't too old but school would have to do their own assessment first. That took ages but we finally got the letter last week saying that he has been accepted for assessment by the hospital and it will be a 15 month wait. He will be 16 by then.

I'm doubting myself if I'm doing the right thing getting him assessed but I've found it's been easier with ds1 to have something official with things like dla/pip, college, work experience and basically anywhere where he is likely to behave "differently" to how you would expect . It was also really helpful when he swallowed a coin aged 9 and the Drs were confused about why/thought he'd been dared or had a safeguarding issue. When I explained he has autism and sometimes he does things a much younger child would do, then they understood.

I just doubt and second guess myself all the time.

I'm usually pretty sure that she will eventually be diagnosed autistic.. but last week she had a friend round and this child was so similar! It made me wonder if a lot of what I've been noticing is just "typical" 6 year old stuff, e.g. they both gave 1 word answers at times and made no effort to continue a conversation. Both oblivious to things like privacy and getting changed, had to be reminded to shut bathroom door etc. Both are obsessed with animals. Both picky with some foods (but generally eat well). On the other hand they both played nicely for 2.5 hours with very little support!

I know it sounds odd but I wonder if some of it she's just "putting on"?

My daughter is very literal, but she's aware of it and finds it funny. For example if I say "I'm boiling" she'll say "no you're not you'd be dead if your blood boiled!" But she knows what I mean really. I find myself saying that 10x a day "but you know what I mean don't you?" to which she laughs and says yes or kind of. She loves being literal and the way people respond.. it's kind of part of her identity now?

She also flaps her hands a lot when excited, but it's been pointed out to me that she does this a lot more when family are around. For example in the Christmas play we went to one showing and not the other. She flapped loads in the one where we were in the audience, but I later saw a video where she didn't flap at all in the morning performance. 🤷‍♀️

She has trouble understanding emotions and gets upset easily, but then she's 6.. so that doesn't seem that unusual?

Some teachers say they see it, others don't so much. She is certainly quirky, but has lots of friends and is very bright. Not that that means she isn't autistic but if her social communication was that unusual wouldn't it hinder her making friends?

I just want to know if I'm imagining things, or if she's enjoying the attention from her "quirky" behaviours. 🫤