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.

Lifeturnsonadime
It may not be popular and most people won't do it because their child will be v annoyed about it and will meltdown and become dysregulated. However if a child has unrestricted access to gaming and other desirable opportunities online including social networks etc there is no reason they would want to return to a school setting that they find difficult. I can't recall any child who ever has in my thirty years as a teacher. Often they remain out of school with some tutoring or alternative provision or they attend online schools or are home educated or their attendance continues to wane further. If a parent wants a return to school then they have to make home a less stimulating environment. Access out of school hours yes but all day won't lead anywhere good for people who do want their kids back in school.

I’d be looking for an out of school autism / ABA expert to assess what the triggers are and putting in programmes to teach life skills and build tolerance / self regulation skills. And for them to go to an autism specialist alternative provider part time and school part time unless and until they can go to school fulltime. I’ve always found it better to intervene before behaviours become entrenched but my child has a very traditional autism / LD profile and responds to adult directed support well and their issues are more about motivation and attention than anxiety / mental health. Don’t believe the utter nonsense about ABA on the internet go and meet providers, talk to parents and observe sessions and make your own decision. NICE guidance recommends a functional behavioural assessment which requires someone who is trained in autism and behaviour. We’ve never had a problem the ABA consultant hasn’t solved.

Of course your kid won't go into school if the alternative is playing on screens all day.
I think one of you needs to quit their job, or try a nanny. Realistically, however indispensable to your organisation you believe you are, no employer is going to put up with you scooting off for hours at a time, or pay you £80 per hour for how educating whilst you are supposedly working.

Well obviously this is purely anecdotal but my eldest was a school refuser. Started in primary year 6. He was out for around 4 months then, then we got him back for the end of year 6.

He started high school, made the transition fine, by the time the school told me they couldn't meet his needs (half way through year 7) he was trying to escape school, they had to call the police because he managed to get out and ran across a busy duel carriage way to get home.

Trying to get him to school, having removed his gaming and other 'sensible parenting' things he was trying to throw shoes in my head. At home he tried to jump out of upstairs windows and got out of the house and tried to throw himself out of a gritter truck.

By the time we called time he had a total breakdown. He couldn't leave his room for months, let alone engage in education of any sort.

After months of him not engaging in any education we were advised to allow him to return to the social interactions he got through gaming to improve his mental health. We were told it is bad advice to punish children who can't attend school.

He took years to recover and took his GCSEs at home. He did return for A Levels to our local college and now is in his first year at UCL having attained top A Level grades.

School was the problem, he couldn't cope with it at that time due to undiagnosed complex sen which clearly were not related to his academic ability.

He recently returned to his sixth form where he was awarded academic prizes including the Governors award for attainment.

Removing screens and devices made things worse not better. It is ill advised.

Great response.

It’s scary that’s there’s still teachers out there who think all school phobics would manger you just removed any pleasure they have in life. 🙄

School isnt easy for anyone ND. For some it’s torture. Refusals isn’t a choice - it’s a physiological response.

I think many people with asd and others are addicted to screens. My own dd is. I think many find school unbearable but I also think pretending that a bit of time at home recovering will mean they go back is also false.

I agree with this. Especially if home means unlimited screen time.

Sometimes it is not in the best interests for the child to be educated in a school environment, especially if the child is neurodiverse and the school is a mainstream one.

There is no point in sending a child to a place where they are not being educated because they can't function in that environment and there is a strong argument that it actually fails a child to do so.

I wish I had stopped trying to force my child to attend a harmful environment (for him) earlier.

I wish I'd listened to him and not to the teachers who were insistent that I was failing him.

How wrong they were.

Personally I would forget school for now, use the money you save to get a nanny and let them recover.

I wouldn't ban screens but I do find with my own child that we do need to reduce screen time for them as they struggle to regulate it themselves eg no screens before tea time.

How flexible is your work? Could you both do 3 days or compress your hours so one of you is home with DC but neither of you have to sacrifice your career?

My friend has a specialist nanny. She has experience working with kids with Autism/PDA/ODD ect.

Thank you everyone. There is a lot of wisdom here and I am really pleased to see a range of different perspectives - which chimes with what i am learning, that there is no one size fits all here. I also see a lot of kindness towards our situation so thanks again. I will read and absorb more and come back with further reflections and questions.

We have a somewhat similar situation - we have two autistic DS. They both have a learning disability too. Fortunately they do attend a special school but there is no provision before or after school or in the holidays. This has meant both my DH and I work part time to cover all the school runs and holidays between us. We have both taken a hit on salary - previously we both worked full time. But I think it’s important to try to keep working when possible for my own sanity.

@UnpredictableJuggle have you looked at other schools or particularly Autism independent schools? If you are already paying for private school, you could pay for Autism independent schools. Most children there will have EHCP to get the funding but not all, and if you can pay then You won’t need the EHCP.

get the right educational environment and you will find things change massively.

My autistic son was a school refuser in Year 5 at Primary school back in 2019. We were lucky in the sense that Covid hit and he had a full 6 months off with no demands at all. We literally just hung out, watched films and chilled. Luckily at this point I was working part time and then couldn’t work at all due to a huge admin balls up at the school.
I fought for his EHCP and he is now in a state specialist school and he LOVES it. He’s now heading to the end of year 11 and I think it was that time off that really helped him. He has had no issues with not wanting to attend his specialist school, in fact we have the opposite problem.
My 13 year old daughter is now school refusing. She doesn’t have an ASD diagnosis but is diagnosed ADHD. She’s currently on a part time timetable attending 2.5 hours every day. I’m currently working full time but I’m not sure this will be able to continue much longer.
One thing I will say is please avoid anything related to ABA. Your child is a human and needs a therapeutic response, not a dog that needs training.

Trinity69 aba is nothing like dog training. What experience have you had of it yourself with your own children?

The posters who say taking his screens off him and then he’ll go to school are making me want to scream. We hear it all the time, along with “just try harder” and “he’s fine when he’s here”.

Unless you have direct experience with a traumatised ND child in burnout you have no idea and should refrain from giving advice.

Hi, Just wanted to send sympathy. I have a DS home schooling for the same reason.

FWIW our school requested an EHCP assessment for us and we were given EOTAS on the first request with no tribunal or anything.

The key, I discovered, is to both get it absolutely clear that the school cannot meet need, and the Educational Psychology report absolutely watertight. Our Ed Psych was great, and I was able to talk honestly to her about the situation and what was needed. She wrote the report very cleverly so that it would produce the right result and we got it first time, no tribunals. Where ever I saw even a hint of a loophole I talked to her and she fixed it.

There are independent autism schools here and they do sound maybe good but they are too far from where we are. If you could get one of those it might be best. They cost about £65k to £85k a year. Staggering amount of money but there it is.

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

It would definitely be best not to send your DC back to school though, because once it gets really bad, it can be incredibly difficult for them to come back from it. Above all, make sure she doesn't get worse, even if you have to just drop everything for 6 months. Once ASD kids get broken, they get really broken. (I am ASD, and when I burned out after the baby years, it took ten years to come back. Still working on it really.)

Exactly this.

There is a reason that suicide rates are higher within the autism community.

My dd was out of school for 18 months in the end. She hasn’t actually suffered academically now she is the right place. During that time I didn’t school her at all, she was burned out and in fight/flight/freeze mode. I mostly worked from home and she was in her room.

Theres lots of evidence that dc in burn out need to regulate and often that means with screens.

I would check out the facebook groups Not Fine in School and if a girl Autistic Girls Network.

I would also check out Dr Naomi Fisher and Eliza Fricker

Something similar happened with a cousin’s DC in my wider family. They unschooled and worked from home and eventually the child went back into education.
Some tips I remember.
Screens are a controlled environment for the autistic brain, they can control the noise and what they are consuming, hence the appeal. However, you need to make sure you control the content very carefully. If DC is learning helpful stuff or doing innocuous type strategy games, not so much of an issue as long as they also get plenty of exercise and fresh air and good nutrition.
Usually you have to unschool first and then do a specialist in person school or an online school with adjustments (so they pick and choose what they learn, to some extent and are allowed to follow their interests, at their pace and to the extent they choose).
Ideally you would work from home and accept the unschooling phase and just plan in quiet exercise time.
From what I remember it is important to keep a standard circadian rhythm and not let the child become nocturnal. If you aim for good sleep for them, nutrition and exercise primarily and forget about the rest for now, hopefully that will make things better. I remember my family had some success with a counsellor after the initial burnout wore off, but there was nothing they could do during burnout itself. It is like a computer that has completely crashed and you just need to get through each day initially with no demands/no pressure.

I think the way for us NT to imagine it is imagine going into work every day and people bump into you left right and centre with force and constantly scream in your face directly (10 at a time) and constantly bark orders at you, every 2 minutes, with just 3 seconds to implement before you have understood what they even mean. That is basically what autistic burnout looks like.

🤗👏🏻👏🏻👏🏻👏🏻

You can take 4 weeks per child per year as unpaid parental leave, so 8 weeks for you then 8 weeks for DH. I would at least try this first to see if it made any difference before giving up my job

You can also see if you can adjust to just one wage

If you do need to drop hours see if you can do this evenly between you and DH so neither of you loses out completely and you get both sets of personal tax allowances to maximise income

I'm really pleased that some posters have managed to get EHCPs reasonably quickly.

My DC was at a private primary when I applied for the EHCP. I got the distinct impression that meant the LA thought they could do nothing at all.

My dd found unlimited screen time the most helpful thing of all.

Her brain was too fried to read or draw. She was too exhausted to do exercise.

Screens were the only thing she could do. They were bloody fantastic. Out of education 18 months. Best thing ever for her.