Autistic child with school refusal and my own career- is there any chance of managing this?

[UnpredictableJuggle]

Name changed, longtime poster, going for Chat even though this is probably a SEND issue. I feel I am recognisable to friends from this post, but want to get a broad sense of how others on this journey have navigated stuff at this stage. Sorry this is long.

My primary school DC has been diagnosed with autism, is unmasking all over the place and is deeply sad and angry as they are trying to come to terms with the way they see the world and the demands placed upon them. This term they have gradually felt unable to go to school and despite quite a lot of accommodations from the school still feel very wobbly about going more than about half the mornings per week, and totally at random- there's no way at the moment to push for any plan or certainty on the days because if they are overwhelmed, that's it. They stay in their bedroom. Dragging them in kicking and screaming is bad in many ways and while we did that sometimew last year I am never doing that again. Never. It would be very harmful now.

DH and I have juggled this by taking time out of work here and there, missing meetings, generally being a bit shit. DC has had a lot of time on the computer in their room while we WFH. Whole days, then another whole day. They love it, as they are in burnout right now - but it won't help their recovery or wider health to just be left there all day every day.

I am hoping that with some support DC won't fall completely out of school and need a year off/never go back etc. But the support they need is sort of that of a SAHM - totally flexible, always there, managing the need for rest with gentle outings plus getting to school where possible. At the moment a nanny couldn't do that - DC would also look for me in the house and if it didnt go well with the nanny there would be 2 days of meltdown. Also would be so expensive as well as the school.

Until this crisis happened we were a fairly high- earning high-spending family, though not super posh or luxury. We just have massive financial outgoings because we have had all the children in private schools, not paid for by wealth but by our ongoing salaries. Autistic DC themself is in a private school. We can do this as long as we are both in senior executive jobs (150k+ each). Our jobs afford us the autonomy to duck and dive, go to the school, etc, as we are often the senior people in meetings and others work round us. But that's not sustainable; fundamentally you can't do 7-8 hours solid work a day if it's broken up by 4-5 hours of managing children. We are exhausted and working all hours and the other NT children take second place which is awful.

Perhaps in future we can get a good EHCP which pays for autistic DC to go to school if they can't manage a state school but we all know that's hard, and a long road, right?

So my question is - has anyone had an autistic child who burns out/has depression age 7-10 but is able to come back into school almost immediately, with support? And have you managed it without having to give up work IN THE SHORT TO MEDIUM TERM? I can see a world where it becomes clear DC simply can't go to school long term, and I call it, give up my job and we try and manage and maybe another child also has to come out of their school. I just literally don't know what to do now, in two weeks, after the Easter holidays. Do I give in my notice immediately or try and juggle another term? I partly think juggling it might hinder DC's recovery too as we end up feeling rushed and stressed which is the worst thing for them.

Everyone I speak to with wisdom about autism - and there are many - say the following

• don't expect them back in school soon
• you can't hurry their recovery
• life might need to change
• this is a marathon not a sprint

But if we give up our jobs, or one job now, lots of consequences fall from that. So anyone who's been there - do we stick or twist right now? Juggle a bit longer or make a change now?
NB am aware that I'm lucky to have them in private school and it's possible to change to state etc etc -thats our second line option but what I would love advice on now is whether there is any way to do right by DC, a and reduce our stress, without changing everything right now.

Thanks for reading.

I think that's textbook evidence of addiction!

No.

She loved reading. Spent all her money on books. Loved drawing, couldn’t do it anymore.

So she took up screens. They were the only thing she could do and pulled her through.

So not addiction in the least. Please don’t assume you know anything about her or how she operates.

Why couldn't she read or draw?

What worked for us, in case it helps

I am a single parent. I compressed my hours into three days in person and the rest at home and had a nanny.

We had a period of elective home education and nanny took to home ed groups/sessions including parkour.

Gentle insistence on outdoor time and exercise each day to help with sleep,

Regular wake, meal and bedtime. Keeping things predictable.

Pets. When it was really bad, I had a small zoo in my home.

Our nanny supported with Arts and Music. We did bronze arts awards.

DC now turning 18. It has been a nightmare. I won’t lie. Various periods of state school, private school. EHE. He got 10 GCSEs. This was incredibly stressful and currently doing A Levels at college against my advice.

I am super proud of him. School is a toxic environment that he desperately wants to fit into. There have been lots of lovely memories along our journey.

My health is wrecked. With hind sight, being flexible and remember it’s a marathon. Take care of yourself and your spouse including your health and relationship.

Very best wishes

If DC is unable to attend school, under section 19 of the Education Act 1996, the LA has a duty to ensure DC still receives a suitable full-time education. This should begin as soon as it becomes clear 15 days will be missed. The days don’t need to have already been missed or consecutive, and provision should begin by the sixth day of absence by the latest. On their website, IPSEA has a model letter you can use. This still applies even if DC is in an independent school - the LA will tell you it doesn’t, but it does. Post back on MN if the LA refuse.

This is separate from the EHCP process, which you should also do.

We have EOTAS and it is great for having flexibility to sort problems. A bit isolating though, and no respite whatsoever.

@AlwaysTryingVeryHard you need an early review. The provision needs improving. EOTAS is not EHE. The LA should not be relying on you to organise, facilitate or deliver provision. The LA is responsible. It does not have to be isolating either. Done correctly, EOTAS is not the cheap option LAs like to think it is. A good EOTAS package is certainly on par with or even more expensive than the SS costs you mention.

It's so very clear from this thread which of us have experienced this and which of us believe that they could have parented it away.

There by the grace of god go I and all that...

Because her brain was so burnt out it was too tiring. She couldn’t process anything that required thought. It was devastating.

It’s 2 1/2 years ago, and she still can’t read for pleasure much. She can draw, but her brain still gets tired easily. It’s meant to take 5 years to fully recover.

Loss of skills is normal in burnout. Her speech slowed down too and she struggled sometimes to talk.

This is all very true, I had an EOTAS package for my children.

I am very worried that the current government is hell bent on removing this kind of provision. Take a look at the Education Bill which will take power away from parents and give schools control.

I'm very glad my children are not of school age now.

I think that the 5 year estimate is fairly accurate going by my experience with my son.

It is devastating. I hope your DD makes a full recovery

I’m a U.S. based parent of an ASD child and I always read these posts about school refusers and come away very confused. What is actually being done to help your child?

When my dd was in crisis we had her seeing a psychologist specializing in childhood anxiety in ASD children within a couple of weeks. The referral to the pediatric psychiatrist took longer, but she started there as quickly as possible. She got sertraline, cbt, and family therapy. I worked with her every day on her therapy
homework. She maybe missed 2 days of school.

she graduated from therapy and weaned off meds.

whenever we see the tiniest hint of anything flaring, we do a refresher round of therapy.

Sorry havent read all of thread but why not online school? Minerva/kings inter high or out school for example.

A combination of a flexible wfh job and moving dd to online school.

There’s just not that level of support on the NHS.

Waiting lists are ridiculous. Pyschologist son the nhs are very few and far between. The young people’s mental health service is completely broken. And only a pyschiatrist can prescribe anti depressants to under 16’s. And it’s practically impossible to access one.

Most people don’t have private health insurance here and this wouldn’t be covered under the NHS. There is a very different approach here with regards to therapy.

@lifeturnsonadime <waves>. We have ‘spoken’ before. I have 2 DC with EOTAS (well one with EOTAS and one with EOTIS - we had one of those judges.) I hope DS is doing well at university.

Unfortunately I've met a fair few kids with barriers to attendance and the only ones who have went back to school are the ones who were homeschooled for a few years. They all have EHCPs, it didn't make any difference.

So yes, you need someone at home with them full time. There just no other way around it

Have been in your shoes OP.

We tried to push through with both of us still working and DD learning at home alongside multiple failed attempts to re-enter school.

The result of this was DD developed psychosis and tried to end her life. Several psychiatric ward admissions later, and DH has quit his job. It became too intense and he now does all the practical stuff at home, as well as all the care for our other child so i can work and support DD. It’s full on. We are financially on our knees but DD is getting better.

I have also reduced my working hours and work from home. She really needed us both to be present for her because she felt so deeply unsafe in the world as a result of CPTSD following school trauma.

If we could do this time again, I would have stopped work immediately she began struggling. While DH did do this much later, and it has helped, DD really needed the emotional support that, in our case and maybe others, really a mother is often best suited to provide.

I regret our earlier decisions. DD suffered for them. And so have I. My mental and physical health is absolutely shot to pieces.

I’m taking it you have no experience of autistic burnout?

It robs you of your ability to focus - even on things you once loved.

All your energy has gone into trying to fit into an NT world.

some people replace their time with screens. Others choose different things.

for my ds it was swimming.

@UnpredictableJugglesorry I don’t know about school refusal , but can one of you have a career break ? Sabbatical ?

I didn’t home school, and my dd was out for 18months. What worked was the correct school. A specialist provision for young people with EBSA, anxiety, autism etc.

I didn’t school at all. I couldn’t, I was working full time. And she couldn’t learn.

and to those talking about taking screens away and addiction, you can fuck right off u til you have been in this situation. There is loads of research now that ND brains use screens to regulate. Of course you need to know what they are watching.

my dd is now working well above her academic level, she has friends. She’s like any other teen. It took time and the right school.

OP some specialist independent special schools will accept students who are not LA funded, so to speed things up you could go down this route instead of the EHCP one. Just to warn you, however, my DS’s place is around £85,000 per annum and the LA also pays for transport on top of this.

You have no way of knowing if this is going to be a short blip, but chances are issues are going to keep recurring throughout their education even if this episode of school refusal of short lived. Things generally get worse not better and for some the answer is to move to a mainstream independent school, which clearly wouldn’t be an option here, so you probably are looking at a specialist setting or EOTAS.

My dd gave up everything she loved. Brownies, swimming, reading. She’s a fantastic artist but that went for a while. She completely shut down. And it isn’t refusal. She wanted to go to school, she tried a lot. But she couldn’t.

Is there any research on gaming itself helping for EBSA?

My understanding of gaming helping to regulate is that it very much depends on the game but if it’s anything competitive it certainly didn’t help regulate in any way. And online gaming communities can be quite toxic. Screen use on the other hand can be nurturing and supportive if used for reading, listening, drawing etc. So it really does depend on how screens are used, but that’s my own experience.

My own autistic child went through a period of EBSA. I worked with their school to reduce demand and sensory overload. They had their own quiet space in the library where they could do some work and still be a part of the community and interact with friends. They also had a mentor and other members of staff who identified as neurodivergent offered additional support. Eventually they returned to full time education. This was a mainstream secondary and DC is now at Uni.

Don't assume it will always be terrible. DN burnt out in Y8. She had 2 terms out and then attended a hospital school on a very gradually increasing timetable, then want back into mainstream for year 11. Good clutch of GCSEs, now doing a levels and expecting to go to university. DB and partner boxed and coxed and partner ended up taking a sabbatical at 1 point but it has got better and she is now great at self regulation also.

I've been told by other parents (DC is also autistic) that any school at all for all children with ASD is injurious and the only thing to do is leave work and homeschool forever and I just think that's bollocks. It might be for some kids but DC bloody loves school and so far the EHCP is very protective.

Keep your job. Is your DH also having the same thoughts? Your career is as important as his. What I would really think about though is whether private school is the best place for SEN- often it is not, which might help decisions about you both reducing hours etc.

Ah that's a lovely message. Yes he's fine thanks, I have to pinch myself sometimes that he's come so far, it doesn't seem real.

I remember posting posts like the OP's post all those years ago.

I hope your children are doing well. Glad you managed to secure your provisions even though you had one of those judges!