DD8 hates school...highly anxious and potential ASD...school say she's fine

[Lalaland50]

My DD8, has been with CAMHS for 2 years - originally referred for refusing to eat for weeks at a time; school-refusal; high anxiety; OCD traits etc. This has been on and off for the last 3-4 years and has got progressively worse.

She had her ADOS assessment last week and we have the Adi interview next week with feedback due in April. I have no idea what the outcome will be - I am convinced she has ASD, but I know that as a girl, she masks and "appears" neurotypical. She found most of the tasks very challenging in the ADOS (barely interacted with the clinician; couldn't do the miming activity; etc).

My husband has cancer and been in an out of hospital for a year - he was in for most of Jan and feb, during lockdown and we didn't know if he was coming home. The school were incredibly unsupportive and offered my DD no support - she did no work for 3 months as I was working (self-employed) and her anxiety meant it was impossible for me to do anything with her when I wasn't working.

She now refuses to go to school and every morning goes in crying, saying how much she hates school. The school say she is fine during the day - she says otherwise and that they just don't notice her being upset - she says they don't understand her and they don't help her. During a meeting with three of the staff last week, there was much talk about being "cruel to be kind" to her and that she is really happy for the rest of the day once she's in (which she says she's not) and that she's absolutely fine - so she just needs to get over the separation anxiety in the morning and it'll all be OK....and we must be careful not to feed her anxiety. I find it patronising and short-sighted - they know ASD is a possibility, but we've never had any input from the SENCO even though she knows our situation.

I just wondered what I should be asking for in this situation. She clearly needs help with the transition into school, but they don't want her to do anything except go straight to the classroom. Am I asking for too much? I'm just not sure what's really going on here with this dynamic and I have this feeling that I'm just being fobbed off most of the time. Any advice would be much appreciated. Thanks.

This is so difficult and I'm going through the whole "fine in school" thing which is totally frustrating. Is there anything else your DD finds difficult or needs help with during the day ? Just wondering if you could build up a picture for the teacher/Senco and see if they can come up with something concrete to help, rather than just blame 'anxiety' around separation. Is she on the SEN register?

This sounds so tough - my son masked and he go no support until he stopped masking and became a pain at school.

Have you looked at the 'not fine in school' resources page. There are a couple of pdfs you could download and take to see the teacher with.

Thanks so much for the replies, I've gone on to the "not fine in school" Facebook page and I can't believe how many other parents have the same experience. We don't know what else she finds hard in the day as she can't communicate this to us (she shuts down, literally puts her hands over her ears when we try to talk to her about it), and the school just say that she is fine all day. One of the few things we do know is that she's terrified of going to the toilet on her own (scared of getting stuck in there and also has OCD tendencies so she is scared of germs etc). She isn't on the SEN register - I didn't know she could be if she isn't diagnosed with anything yet.
Thank you.

Poor little lamb. My son was terrified on the loos too. I wish i could think of some ideas to help the school recognise she isnt fine.
On the transition in the morning have you got any ideas that would help? Like coming earlier or later or a particular staff member meeting you or a particular job she could do when going in the classroom. My son was happier going in first as it was quieter. A child where i work (in admin) collect the teachers whiteboard pen each day.

I suppose you could say 'look whether this is a child with asd strugglng with transition and masking at school all day and really struggling or an over anxious mum and a child with shortlived seperation anxiety - i need support with this. I think x would work better than the current set up'

The school don't want her to do anything different - they want her straight in the classroom - this is their "cruel to be kind" strategy. We have had meetings and emails about it, but their attitude is we just need to be firm as she's happy all day. I realise after looking at some resources online, that she fits in with the "freeze" or "submit" response, which basically makes it appear as if they are just being quiet, but inside, are highly anxious. The school tell me she is "fine". But it suits them to not delve deeper I suppose. She's telling us she's not. it's hard to know how to "persuade" the school that she's actually not just telling us this for attention, which it seems, they presume.

Its so hard. You have my sympathy.

I would believe DD's version over the school's. They aren't seeing the problems because DD is quiet, compliant and adept at masking.

If DD is medically unfit for school, including because of her MH, the LA have a statutory duty to provide education. You should also apply for an EHCNA. DD should be on the SEN register, no diagnosis is necessary. When you speak verbally to school follow it up with emails so you have written evidence.

To a certain extent avoidance does breed further anxiety. The longer a pupil is out of school, or in school but outside the classroom, the harder it is to return. On top of the original worries they worry about what they have missed and other pupils moving on. However, that doesn't mean throwing DD in at the deep end with no support! That's setting her up to fail. It is like saying don't prolong goodbyes means you shouldn't say goodbye at all, which obviously isn't the case.

As well as MildredPuppy's suggestions does DD have ear defenders and something you have given her e.g. a small knitted heart to keep in her pocket? Also, press the school to provide emotional literacy support.

One of DS1's responses is freeze and it is difficult to help them with it.

We are going through this with ds8. He is diagnosed adhd and asd. We literally have to fight him to get to school. The last 2 days of term 2 members of staff having had to physically remove him from me and take him in. We're told the same though as soon as he's in he's fine, feels like the finger is being pointed at me for him not wanting to go in. They tell me every day he's doing great yet he tells me every day he is struggling. I know he's masking and told them just that but I really don't think they believe me. No advice because I'm getting nowhere with school but just wanted to say you're not alone.

It is unbelievable how many useless clueless schools there are out there. How dare they treat your poor children like this?

Advice here:

www.ipsea.org.uk/school-refusal