How to support dd with anxiety and ?ASD

[FlyingFlamingo]

Dd2 is 10 and waiting for an ASD assessment, she was referred last year by school (who have been great, no issues there) after we raised concerns about her need for routines, rigidity, meltdowns, lack of close friends and difficulties ‘reading’ people’s emotions. She is likely to be waiting another year for an assessment. She starts comp next year and during the last few weeks her anxiety has skyrocketed. She hasn’t directly come out and said it is the change of school upsetting her but she is really struggling with anything she can’t control or she perceives to be imperfect. She had a major meltdown last night about a cake decorating competition being held at school when she felt her entry wasn’t good enough, she was up several times in the night crying following a distressing evening of flapping, screaming and running around the house. She also can’t sleep if she has lost something, even if the something is nothing of any particular value to her. She refuses to throw things away due to forming attachments to objects that would appear insignificant to anyone else.
How can I best support her? We were warned that children who have ‘masked’ to this sort of age are likely to develop anxiety. I have downloaded a calming app for her, bought an age appropriate book about anxiety, made contact with CAMHS and I am waiting for a callback from anxiety clinic and obviously we give her space to talk/not talk as she needs. I am frightened of her anxiety spiralling out of control leading to worse problems as she enters her teenage years so I would like to support her as much as we can now.
Thank you

This book might help: https://www.autability.co.uk/autismandanxiety

I’m in the same situation, all I can say is my son is now 12 we noticed major problems at primary school. He has no confidence, little friends and was feeling suicidal. When he left school he went to a Harris academy secondary school. Totally wrong for him the problems got so much worse. My older child is in a specialist school as he has ASD and adhd and my youngest is awaiting an assessment. He stopped going to secondary school after 4 weeks and only now we’ve been give a place for him at my older sons school but he will need to retake year 7 as so much was missed. I can really sympathise with what you’re going through. I found with my child on Amazon they do a worry book and I made him clear his mind each night and write his fears and problems and to leave it under his bed. I would then go in read the book and take the page out. I’ve kept them for years to come and we can look back on them but he feels it’s the only thing that calms his mind. I guess it makes him feel that worry has disappeared. Even if it’s temporary. Good luck to you, it’s tough, it’s hard and it will at some points get harder with puberty ect. But hang in. We are all winging it! My son didn’t find counselling helpful, he said for him it was harder to tell someone when he isn’t sure himself. He likes to write, express through art. Sometimes talking and letting other people know doesn’t make them feel safe. Me on the other hand I receive counselling for dealing with home life, for me it gives me an escape to offload to someone. Different things work well for different people. X

Thanks for your reply.

She has probably the same worry book but says it makes it worse because it makes her think about things before bed. The attachments to objects has got much worse - we had a week of nightly meltdowns over some of my pyjamas I threw away.

The GP has been no help, I got signposted to an organisation who have an answerphone message to say they are working from home due to covid and didn’t answer my email. I never heard back from anxiety clinic. The primary school continue to help as much as they can and the new school have also set up extra transition sessions but I think it’s the leaving her current safe, happy school that’s the issue rather than starting the new one.

It sounds like she craves control over her surrounds because she feels out of control within herself.
Would she have physically gotten rid of the PJs herself if she had new alternatives? New ones that are identical?

My DD was fine, quirky but fine in Primary the transition to secondary was scary how it impacted her. Fortunately I could pay and go private and only had a wait of 6 weeks, I dread to think how she'd be if we had to wait the 4+ years for NHS in our area. She was fine with the school work but the school environment was a different story. Make sure you get things in place for her start at the new school and make sure they know she's waiting for assessment.

Things you could ask for:
Toilet pass to go when they aren't busy - DDs school also has specific ones without hand driers she has access to.
Small room for tests - this will likely only be available during whole school testing not during normal classroom assessments.
2 minute release pass so she can leave classes a little early to move through the school without the crowds.
Access to the school safe space during unstructured time, often in the library.
They will likely do extra familiarisation sessions during the holidays for children with ASD to get to grips with the layout.

How is she in terms of sensory needs, noise cancelling headphones and tangle fidgets have really helped DD. Planning what we are going to do, avoid busy periods at the supermarkets, bowling alleys etc etc

The secondary school have a list of things they will be putting in place for her - she can go for lunch early to avoid crowds, she can go to the ALN area whenever she needs, things like that. She has an IDP that has been written just for this purpose, she never needed one in primary but I met with the ALNCOs from both schools a few weeks ago to write one.

They were my pyjamas, not even hers! She’s becoming a hoarder which is another worry for us. I am hoping we can access CAMHS once she has a diagnosis because it seems impossible without one!