ASD son refusing school, no help from anyone

[Reyrey1]

Hello...
This is my first ever post and I'm very delicate mentally at the moment, please be kind. Just looking for any advice or even someone that has been in this situation.
I have a 12 Yr old ASD son diagnosised earlier this year-High functioning but high anxiety. Possibly ADHD too. Started mainstream secondary in September. Was going in for most part but meltdowns (violent/swearing) most mornings to get him in & normally had at least one day off a week due to refusal. Year 6 was when it started getting hard but could get him in, he only had a few days off in year. The EBSA started in January after Xmas hols. We were attempting phased return, hour or so at a time from Jan-April. In that time he managed only 3 full days. All others were either half or just an hour or so at a time.
Since April completely stopped. We tried everything. It got to the point his body was physically recoiling when we pulled up to gates, his breathing got worse etc. I decided to stop forcing him or even encouraging it as I just couldn't keep forcing him into an environment that's not right for him. Pretty sure he has trauma from the whole transition and burnout (also had 2 suspensions due to fighting which don't think helped) SEN are aware and working with them. They're helping in a way as no pressure/no fines but there was no plan in place. Just see how he gets on. We have applied EHCP assessment, rejected twice. Going to mediation. Education Access/LA have rejected his referral (they picked out ONE 'postitive' sentence about reg attendence that the GP wrote and went with that (it read something like he would benefit from smaller group settings due to social anxiety but would benefit from regular attendance) going back to GP in hopes they can amend it. I can't home Ed as he won't engage. He is a nightmare to be fair, refuses all help/options and he HATES learning although very bright.
Don't even mention CAHMS-he had a massive meltdown when we did get appointment, lengthy phone call afterwards. Says he wants to kill himself, grabs knives etc etc have told them all this but got told he won't engage so washed their hands of him. We've had to go private with psychiatrist. He is now on fluxotine but only just strarted so no idea how that will go. He rarely leaves his room let alone house. He's losing what friends he did have. All he cares about is his PlayStation (hyperfocus/interest) he is down to two friends as only ones who play with him now. He used to be very sociable, funny, popular, loved seeing mates. Yes always had a temper, was always the challenging part. But he can't get his head around the change after primary school and that some of friends are different now/don't like him anymore/made new friends. Still desperately wants friends but doesn't seem to understand they don't stay friends if you don't see them. I'm terrified I'll have a social recluse for a son and a grown man in our spare room playing on his PlayStation indefinitely. My heart completely breaks for him and that I can't fix it all. I feel broken to be honest. I'm also still in shock that the past 2 years have gone downhill this rapidly. He went all those years in primary school and no one picked up on this, although I knew there was something. Could never figure it out. He obviously masked extremely well.
Any advise or just some kind words would be appreciated. This is the worst time of our lives and I feel no one is helping even though I'm begging. We're just not getting anywhere. I believe he needs a specialist setting but as he's academically able, that doesn't look like an option even if we did get EHCP. Just feel he's completely lost in this education system that is no longer fit for purpose.
Sorry for such a long post, appreciate anyone reading it and taking the time to reply

It sounds like he is autistic burnout perhaps? For us, DD just plays games all day for the last year, no school. Some TV. Made no sense to us until we found stuff online about low-demand parenting and burnout, and now we are relaxed about it.

https://www.amandadiekman.com/blog/burnout-recovery

We are on the border of Stage 1/2 in the picture towards the end of this post by Amanda Diekman. It takes time, it's slow, but hopefully their nervous system can un-crash and rebuild slowly. It's so hard, I'm really sorry, but it's good you are fighting for the EHCP because they have to take EBSA seriously in a SEN child.

If the LA has refused to provide alternative provision under section 19 of the Education Act 1996, email the Director of Children’s Services, reminding them of their duty under section 19 of the Education Act 1996 and threatening judicial review if they do not comply. If that doesn’t work, you need a pre-action letter. SOSSEN can help with this, but there is a wait so you may want to look elsewhere.

Complain to CAMHS. It is can’t engage, not won’t. He isn’t refusing. They need to amend their offer, not discharge.

Even if there isn’t a suitable school (and there may be specialist schools you aren’t aware of within travelling distance that can cater for academically able DC) there are still options. There is EOTAS/EOTIS.

There are some gaming alternative provisions.

I have 2 autistic dcs who are both refusing going into school. They are both luckily engaging with learning at home, so it's not really a concern for me and I'm happy for them to stay home until after GCSES or even A levels. Is there anything he would engage with? Online learning or AI programs? There is so much out there online. You could try online schools like KIH or MVA or programs like Seneca learning, or Oak Academy for free, even just an old fashioned revision book from WHSmith. You can do even a single GCSE online, at any age. It doesn't take a lot of time to cover the same at home than they would in class, so even only one hour/day could keep him on track education wise. There is also the option of a tutor, either in person or online. If he is lonely, maybe he'd really like a tutor, like an older student. Even 2 hours every fortnight in a subject like maths with the right person could make a huge difference. Otherwise, is he doing any sports? If he doesn't have the social confidence to join a club, could he do something as a family or at home? Cardio releases happiness hormones and muscles build confidence, especially in boys. We got a treadmill that fights anxiety, depression and stress. It's not easy, I get it, but please don't worry about him being in his room. You want him to be safe and happy. There are so many worse places he could be, and playing computer games is nothing bad or shameful. It's actually a very helpful thing for neurodivergent children as it helps him regulate and recover. Maybe he could chat with friends while playing? Or use this interest as motivation to join a coding club or computer science classes online? Most importantly, look out for things that make you proud of your ds and tell him. It might be something like how he beats a final boss in the game, but also how he successfully advocated for himself by refusing to go to school. It takes courage to step up and admit that school is not the right place for oneself.

Please appeal the EHCP rather than doing mediation. Your son absolutely meets the threshold for an ECHNA.

www.mumsnet.com/talk/special_educational_needs/5309128-ehcp-support-thread-no-5?utm_campaign=thread&utm_medium=app_share

Has the school referred to an educational psychologist to try and identity actual needs? Check school policy's, they should be on school website regarding what help they should be providing for SEN pupils - make sure they are following this. It does sound like burnout and your son will not be able to do much, my daughter is only starting to come out of her burnout after missing an entire year of school. Keep pressure off, read up on PDA and low demand parenting. Do keep him safe if he is displaying risky behaviour, hide sharp objects if you have too. Keep at the EHCPA - get mediation certificate, collect all evidence you have and go to appeal. This is the stage we are at. Just because your boy is academically able does not mean he is intelligible for an EHCP and specialist provision. Sending hugs as well, it is heartbreaking seeing your child struggle so much. Xx

No real words of advice, as we are finding our way through the system aswell. Have you seen Naomi Fisher's website/social media, or 'Missing the Mark'? Both are really useful and reassuring when you are faced with this. Our DS(11) hasn't been in school since Easter (and only in for part of the weeks for the year before that!). Highly anxious, doesn't like to leave the house, wants to spend all day gaming/watching Youtube, referred for ASD assessment, dyslexic.

School were like yours, supportive and not fining, but not many suggestions either. Finally they referred to Ed Access at end of term, who were very clear that they thought an EHCP was needed, so school have now applied (it probably won't be accepted though-at least his school don't expect it to be). They have also offered some tutoring at a llocal library (as alternative provision) starting in Sept. I have no idea if DS will manage to attend this, but at the moment it feels worthwhile going along with it and seeing how things pan out. I've been preparing to pull him out of school and EHE if the LA or his secondary school start to insist on him attending school again before he is able, as this feels like a very long way off (if at all). DS currently won't engage in anything like learning, but joining the HE groups on facebook, i'm less concerned about this, and hopeful that if we give him enough time to recover he will re-discover his enthusiasm for learning. So i would say don't dismiss the idea of Home Ed, just because he isn't able to engage now - with the pressure of school and having to learn x/y/z removed, he may find things easier (or that is my hope!)?

@FarmersWife3 if the EHCNA is refused, appeal.

It is far more likely to be can’t engage than won’t.

Personally, I wouldn’t deregister and EHE. It is easier, although not easy, to get support when you remain in the system. Crudely, at the moment you are someone's ‘problem’. If you EHE, it is easier for professionals to sweep DS’s needs under the carpet.

Instead, if DS can’t attend school, the LA is still responsible for ensuring DS receives a suitable full-time education. And if tuition in the library doesn’t work, there are other options that don’t look like learning and can be child-led.

You can’t be forced to send DS to school if he isn’t able to attend.