To wonder how we can make school work for ASD 7 year old?

[Corilee2806]

I’m at the end of my tether and really need some advice from anyone who’s been through similar.

My almost 7 year old is autistic and also very bright (she was diagnosed privately earlier this year). We moved her to a new school at the start of this term because her previous school failed to support her, she was having daily meltdowns, tummy aches, and even said earlier in the year that she wanted to die.

We hoped this new school would help her start fresh, but half a term in, nothing meaningful has been put in place.
We were told there would be an Individual Support Plan, but it still hasn’t materialised. The SENCO is nice but things are slow-moving, and everything feels inconsistent, some staff are great, others don’t seem to understand her needs at all. There’s been no formal plan, no structured emotional regulation support, and communication has been very minimal since the first week. I don’t know if I’m expecting too much. It is a small school. How long should I be giving for the different stages of ADPR (which has never been formally done in the last year of challenges - because she is academically ahead)

After a positive start, mornings are again extremely difficult - panic, tears, saying she doesn’t want to go in. Some days she hasn’t managed to go. She can be ok once she’s in the classroom (typical masking), which makes it even harder to get anyone to take it seriously. At home she’s increasingly anxious, exhausted, and losing joy in the things she used to love.

We’re at the point where I’m wondering if keeping her home for a while might be kinder. I’m worried about her mental health deteriorating again, but I’m also aware schools and attendance officers can be difficult if you withdraw temporarily.
i don’t know what to do for the best.

Feeling very alone and like no one gets it, but I just cannot see her go through what she went through earlier this year again, and I can’t see how school can work for her in the current system.

You are expecting a lot from the school. She has recently moved there, they may have a high needs cohort and be scrambling. Not saying it’s good enough, it’s not. But schools are under resourced, under funded and under staffed. So the outcome might not be what your DD needs despite everyone’s best efforts.

I know everywhere has ordinarily available provision, I probably didnt explain it well. I just meant Surrey have released a fancy new guidance document in sept, and it has some examples in it that op might find helpful.

OP you have written that your dd is academically able and masking her autism
symptoms in school. I expect this is why the school isn’t prioritising her for additional help: there is a huge surge in children receiving diagnoses and about a quarter of her class will be in a similar position. Schools will prioritise the needs of children who are overtly not coping in school and who are unable to mask their symptoms. I don’t blame the school here: the education system is not resourced for a situation where up to half of children are seen to have additional needs.

As your dd’s behaviour is worse out of school and in the transition to school it may be more productive to channel your energy into helping her manage this, rather than waiting for school action which may only tackle part of the problem.

I knew what you meant! Surrey are notoriously crap with SEND (although not quite as bad as Kent) so maybe they thought a shiny new document would help?!

It can be useful to find little nuggets of best practice.

Teachers are woefully under trained on this stuff on the whole. And I say that as a teacher. I've had to train myself.

You only have to concern yourself with your DD and her needs, OP.

The school's resources and the other children are their responsibility, not yours.

Carrying out the ECHNA is done by the LA, not the school: they have to make some observations (which they should be doing anyway) and allow the educational psychologist and the occupational therapist to observe DD. It is not a huge burden on the school.

I repeat, they should be observing DD's needs and working out how to meet them anyway.

Just thought of something else - I know now to describe DD as having "SEMH" needs and that the kind of support she needs is "ELSA", but I didn't know those terms when she was 7. This website looks useful:

Resources for Emotional Literacy Support Assistants - ELSA Support https://share.google/0B3PBQLzs5cSK2eeK

I am really aware of the resource limitations and trying to respect that as it is a small school and there is a high level of need especially in her class. I assume that’s why she tends to be back of the queue for getting support put in place but she’s the only child showing such high levels of EBSA at the moment so I thought that would be a priority. But I do really have to advocate for her as no one else will especially as her needs are not obvious. And I am just so fearful of going back to where we were. Things are better here in that this school is more nurturing, willing to make accommodations and say they will support the EHCP etc - unlike the last school which was bigger, had more resource to support in theory but chose not to. But it comes down to capacity and which children are screaming for support the loudest.

good to know re the white paper - I hadn’t seen that latest update. I think I will use half term to get the EHCNA in and at least then we’ve got the ball rolling. I don’t know how we will manage in the meantime as I suspect we’ll be looking at a very long process.

Go ahead with the ehcna now on the basis it'll be refused but once you finally get to tribunal you'll have plenty of evidence.

@Needlenardlenoo thanks for the advice - that’s really helpful re SEMH/ELSA. I’ve only recently really understood how EHCPs aren’t just for children struggling academically as that’s what we were told at the last school (must be 2 years behind etc) and I can clearly see she fits this area of need the most. She is likely AuDHD too (need to get the ball rolling for ADHD assessment) and she is just hitting that age of awareness of feeling different and she’s finding that hard.

@Fearfulsaints I have been overwhelmed trying to work out what to prioritise in terms of assessments and what might help her most but had been thinking OT next so that’s really helpful. My son had an assessment a year ago (he is younger) and it was really helpful. Couldn’t get the school to put anything in place though. I didn’t realise they could do emotional literacy as part of it too - that will definitely benefit her.

Join the EHCP support thread OP and we will "translate" any other unhelpful and untrue things professionals may say to you!

My daughter is academically able despite the masking and SEMH needs but the SEN Code does cover that. I found specific wording I could use on the IPSEA website (for tribunal).

Good luck OP, chin up. Don't believe anything you're told without checking with an unbiased source.

Just check with any OT first as I dont think they all do it. It depends on their training.

The school does need evidence if the council isn’t just going to reject the application. But half a term should do.

OP, would you consider a Subject Access Request to the previous school? That could generate a lot more evidence (although I think you have enough to meet the requirements of the SEN Code already).

Template letter 18: asking for a copy of a child’s school record https://share.google/mbS6II79jHk6Ly2nB

If the council wants to reject the ECHNA request, they will do so. It seems in many cases to have little to do with what it says and a LOT more to do with the council's desire to reduce EHCP numbers.

Evidence is useful though and SENDIST read it. Of course reports will have useful things in too.

I would consider an SAR to the previous school. Would they have to comply?

Yes.

Accessing pupils' information | ICO https://share.google/PAHWXKOSlRAQJbdCH

Legal right under GDPR.

I am a primary school teacher with heavily masked autism and ADHD.

In my experience, teachers are not being educated about masking and how autism can present differently for girls. We had an INSET morning recently about Autism and it was really disappointing and lacking in any new research.

There are SO many things that could be done to help your child feel more comfortable in school. Your daughter is being failed by the school and I'm really sorry.

I would start with a meeting to really stress the impact masking is having on her. Especially with the added stress of not having her needs met because she internalises her symptoms in that setting. Her needs are just as important as any child with autism who presents outwardly at school (if that makes sense?)

She needs some specific teaching around emotions from the school and some ways to show her teachers how she is feeling without having to explain. She needs to have her demands reduced and instructions broken down - for example a 'Now and Next' board. They need to use her special interests to help to build a bond with her and make her feel safe. These are the basic things they could start with.

Is there a chance that she also has ADHD which is often experienced alongside autism? It also adds an extra layer to the difficulty because it creates a real state of confliction within your mind.

I totally understand op. I'm in scotland so a different school system but my chikd had similar issues at that age. Unfortunately it got much worse and led to full blown EBSA age 8. It took 1.5 years to build up to full attendance. But as soon as that happened they removed all support again so the same thing happened.

There is very little support for high masking children that are doing ok academically. That's because schools dont see, or feel the effects of, the impact at home e.g. self harm, sleeping and eating issues etc. I've thought so many times that it would be easier if my child threw chairs across the classroom instead!

Adhd meds have helped a bit but sadly we are stuck in the sen-betweeners area. Not severe enough for ASN school and not able to cope with mainstream. High school next year I just can't see happening.

OT and speech and language therapists can both do work around identifying emotions etc.

i wouldn’t be too optimistic about either - my son had four years of it and got as far as crying could be happy or sad.

your EHCp application will be better if you have more documentation. The new school if it doesn’t have access to the old schools records will be reluctant to send off an EHCP request with very little evidence.

in your shoes I’d get as much evidence from the old school as you can - SaR request or alternatively if you contact and say you are going for an EHCP they may be happy to share.

your child is not going to be able to tell you what is wrong. Suggest you try to ask for a meeting with the teacher and ask for accommodations - eg going in early/late, having a special job to do in the morning type stuff.

I really thought things were getting better with regards to understanding how autism can present differently in girls and masking, internalising etc but our experience has shown that's not the case. More education is definitely needed.

Yes - when she got her ASD diagnosis we were told ADHD was also likely and to consider assessment. We also had a cognitive assessment as part of it and were told her scores were the highest they'd ever seen. This explains partly how is she able to mask so well. With the ADHD, they said her brain seemed to be going at a million miles an hour - it's apparently quite common when there is giftedness/ND as it's like the brain almost can't put the brakes on. We're not pushing the giftedness at all as we fully realise she can be as clever as she likes but will also face challenges in life - we just want to her to be able to learn in a way that suits her and to be emotionally and mentally healthy. I just fear so few people will get that.

Will definitely look more into the emotional literacy stuff and ask the school for another meeting. The last school will likely be as obstructive as possible regarding handover of info, SAR requests etc sadly - it didn't end well. This massively affects my confidence in dealing with the new school. I do want to ask for another meeting but as my last few emails have gone unreplied to, and the ISP that was promised by half term isn't available yet, it feels like the same pattern again. On my bad days I say I want to home ed but my husband isn't keen and thinks this won't help.

In terms of accommodations already tried - various types of soft start in the morning but she will only go in with her teacher who isn't always available - she is her trusted adult. We tried going in through breakfast club, the office, going in early - logistically challenging for various reasons (I have a 4 year old with likely ASD/ADHD in reception, so need to factor him in, and he can be very difficult to get out of the house on time) but the issue is she doesn't want to separate from me because she clearly doesn't feel safe. We've tried special job, different choices, reward chart. Going in later but she just drags it out. Teacher coming out to play games with her and she introduces her bunny for the day (works well - most effective so far but not an option every day). I feel like we need a formalised plan but it doesn't seem possible.

It sounds really difficult.

But I think you need to steel yourself to be That Parent. We've all been there, sadly!

It's good in a way that the relationship with the previous school ended that way. There will be lots of evidence for that SAR to find...

One thing I would recommend is to get your husband involved as much as possible. He should see firsthand what you're dealing with. He could take on the SAR, for example or follow up on the missing IEP.

If you've got two DC with probable SEN you are going to be dealing with this stuff for a looong time so family teamwork is key.

Yes - accepting I’ll probably have to be ‘that parent’. I know there’s lot of us out there just from reading in support groups like not fine in the school. The last school basically framed me as ‘anxious mum, needs help’ so I’m used to it in a way.

yes - my husband has a busy job and predictably I have given up work essentially to deal with all of this. But I’ve asked him to take on the correspondence with the previous school as that’s something he can practically do and I don’t really want to see the contents of the SAR!