ASD Year 8 DD refusing school due to anxiety – what are our options?

[ThrowAway987654321]

Hi all,
I’m really struggling and hoping someone might have been through something similar.
Our DD is in Year 8 and has an ASD diagnosis. She also has an EHCP, which makes it feel complicated to just pull her out of school. She has always found school difficult, but things deteriorated badly towards the end of Year 7. She only managed one day of Year 8 and has refused ever since.
She is incredibly anxious and unable to talk about what exactly feels so hard for her. At the moment, she spends all of her time in her bedroom and doesn’t want to go out at all. During school hours, we remove devices (she's a gamer), but she just sleeps instead. I'm not concerned about her mood; when school is off the table, she is perfectly cheerful. She appeared to be brighter and more confident at the end of the summer holidays.
School have been sympathetic and want to help, but in reality, I’m not sure what they can actually do. They are adament that it is the right setting for her, however, it is a large, noisy environment and there are only so many adjustments that can be made. She is very bright – predicted 8–9s in all subjects, meaning that a special school would be unlikely to meet her needs – but this feels almost irrelevant as I honestly can’t see how she is going to get back into the classroom at this rate.
We’ve thought about online schooling, but I’m worried that once she’s out, that will be it and she’ll never reintegrate. At the same time, I can’t see how things can carry on as they are.
I feel completely drained by it all and really don’t know what the right next step is. Has anyone been in a similar situation? What did you do?
Thanks in advance.

Personally, I wouldn’t deregister and EHE. It is easier, although not easy, to get support whilst remaining in the system. It is easier for professionals to sweep DC’s needs under the carpet if you EHE. Crudely, at the moment, you are someone’s ‘problem’. If you EHE, you relieve the LA of their duty to provide education and the provision in the EHCP.

However, that doesn’t mean doing nothing. Have you requested an early review of the EHCP? What support is already in the EHCP? Is DD receiving it? Has the school tried anything else? Is alternative provision in place? If DD is a gamer, there are some good APs that can tap into that. The school may be adamant they are the right setting, but DD’s presentation is telling you otherwise. Have you looked at other options? There are some SS who can cater to academically able DC, or independent mainstreams, or, if it is inappropriate for provision to be made in a school, there is EOTAS/EOTIS. Online schooling doesn’t have to mean social isolation. Some do reintegrate - although if they don’t, that isn’t the end of the world.

If you want to EHE though, you can. The EHCP doesn't change that. Deregistering from a mainstream school is the same as it is for those without an EHCP. Although, as I said, they wouldn't then have to provide the provision in F.

Thanks so much for your reply - I really do not want to EHE! Its more that I am concerned that she is getting no education at all right now. You are completely right about being someone's problem, and its useful to remember that.

We had the EHCP review just before the end of term, and school said that things were going well and they thought that th decline was due to timetabling changes as a result of exams. They said they were happy with her, and I think I just got swept up in it all. I think I might request an early review.

RE SS, I've struggled to find one that might meet her needs. We are in South London/ Kent, and I did look at Limpsfield Grange, however, they told us that while they are mainstream, in reality they cater for girls between "average and two years below age-related expectations" and didn't think that they were the right school for her.

I've not found any independent schools that look as if they would be any better than her current setting, either. She's at an all-girls school now, and doesn't want to go co-ed, though if we found somewhere smaller and more relaxed that might work, but there doesn't seem to be anywhere within a reasonable distance.

Thanks so much for taking the time to reply, it's helped just having a sounding board.

Have you requested alternative provison?

Have you had the LA’s decision following the AR?

Limpsfield Grange isn’t mainstream. It is a SS.

If you think another MS could work and it is within distance, Kent College can be quite supportive of DC with SEN. They have a lot DC with SEN.

I know you said not co-ed, but depending on where you are, Canbury might be just about possible if DD can cope with a long journey. It is a tiny co-ed school. Technically, it is MS but it isn’t your typical MS. They have a large proportion of DC with EHCPs. Or there is Kingswood House, but that would also be a long journey depending on where you are.

I will PM you a school I would avoid. They can be funny about negative views posted online.

Hugely appreciate this, I’ll have a look - and yes please to the DM!

So, just by way of an update and a plea for any advice! DD hasn't been to school for two weeks, now. I've emailed school asking for urgent meeting and support (on Monday), and I've heard nothing back from them?!

I emailed her EHCP co-ordinator yesterday, also not heard back yet however this is more understandable.

I'm honestly not sure what my next move is? I can't quite believe school haven't contacted us, despite me being clear that I cannot see how she's going to get in, and that we all need to meet.

(On the other hand, DD has been a different child this past two weeks; she's been so relaxed and happy - I've honestly not seen her like this since pre-Reception 😥).

Have you requested alternative provision?

Where are you up to following the AR meeting?

Would you re-consider online school? It could be funded by the EHCP, the easiest and quickest way is to stay enrolled with the current school and to get the current school transfer their funding to the online school. I can recommend Minerva Virtual Academy, they are brilliant for academically very able autistic girls. There are loads of them, they all get together online to chat, face time and meet up in person at a host of regular school events, and locally independently. You can take GCSEs and A levels early, if you are bored by the curriculum, or take extra subjects. Some kids take 6 A levels.

We are nowhere! I emailed at the beginning of the week to request any meeting - they just haven’t responded at all. Today marks the end of the second week and they haven’t spoken to us at all.

yes, online school would be ideal, but I don’t want to lose the support of the EHCP, meaning that they would need to agree to pay for it. But as no one’s got back to us I just don’t know how best to proceed.

I think if your daughter is happy and relaxed now, this is where you want your focus. The people who know her best are you and your daughter herself, and luckily you live in the UK where you have an awful lot of freedom from the school system (we often forget how uniquely lucky we are in a world where any form of education that takes place out of a physical state school is illegal in most countries), so you don't need to send her back to school. Unfortunaly, fights over funding for out of school provision usually take years, sometimes if you are very lucky months, but never days or weeks, but there are luckily easy ways to get her a good education starting today if you can bridge the gap yourself. Do you get DLA? That would help to pay for online schooling. If you don't, and finances are an issue, there are free pretty good online resources like Oak Academy and Khan Academy that fill a full timetable. Stay enrolled with her current school and push for them to fund online school directly if your LA won't name an online school in an EHCP. If you can prove that your daughter engages better and makes better process online at home, this is evidence that online provision is suitable while in school provision is not. If you stay enrolled with your current school to either get them to fund online school or until you get an online school named in your EHCP, your current school will remain responsible for your daughter's attendance and safeguarding, so they probably want her to come in weekly for welfare checks and see her online attendance record, so it's probably best to try to maintain cordial relations at all cost to make it easier for your daughter to keep going in. This can be a good thing if your daughter enjoys subjects like PE or DT that are not offered online. Some schools allow children to come in for practical sessions and to fulfill their welfare checks that way. This could also be a good way to keep up socialising.

That’s great advice@NellyBarney. My slight concern was that if I pay I’ll be committed to pay the LA might decide that I have to continue (but it’s only a slight issue as if I need to, I will). I will look into it, you’ve given me some hope. My preference is for Minerva, so I’m hoping that she can be duel registered

Also, you could contact the SEND department of online schools like MVA directly and ask for their advice. They usually have experience with many LAs and can tell you which LA is likely to help and will also attend meetings and appeals etc.

When you say you are nowhere, where exactly are you up to? Unless you say where in the process following the AR process you are, it is difficult to advise on the next steps.

So, you had the AR meeting just before the end of the summer term. Following that:
Did you get the report circulated within 2 weeks?
Within 4 weeks of the meeting, did the LA inform you if they were going to amend or not?
If they maintained as is, have you appealed?
If they proposed to amend, did they send the amendment notice?
If they were going to amend, have they finalised yet?
If they have finalised, have you appealed?

Once you have the right of appeal following the AR, you can appeal. You can request an appeal for DD is expedited on the basis she is out of school.

Personally, I wouldn’t deregister and EHE. If you do that, it is easier for professionals to sweep DD’s needs under the carpet. From your posts, DD needs therapeutic support as well and the EHCP can fund far more than the vast majority of parents can afford to fund themselves, but if you EHE, you relieve the LA of their duty to provide the provision in the EHCP or s19 provision.

Have you formally requested alternative provision from the LA? If so, when did you do this?

Thank you, I think I misunderstood the previous message. The AR was all approved and it was over 4 weeks ago; we were happy with it at the time. However, her circumstances have now changed in that the return to Year 8 hasn’t been successful.

I’m hoping that I can get her started at Minerva WITHOUT deregistering her from school, as I do not want the onus to fall on us. As you say, I want the therapeutic element to be supported by the LA.

So you have the right of appeal now, have you appealed?

I have contacted the LA case worker, but no response as yet. Unless there’s another way of appealing I don’t know about??

(Sorry, I can probably google this, but thanks so much because I didn’t even know that this was the process!)

To appeal the EHCP, you don’t appeal to the LA. It is via SENDIST. The LA’s decision letter following the AR should explain your right of appeal and give you the contact details of the mediation service. You need a mediation certificate from the mediation service. Although you don’t have to actively partake in mediation. You only have to consider it. So you can get the certificate and submit to SENDIST without partaking. Then you complete the SEND35 form and submit it with the certificate and other relevant paperwork to SENDIST.

@flawlessflipperthank you, once again. I’m going to sit down tomorrow and go through all of this. Hugely appreciated