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.

Mine just played Pokemon and Zelda on her Switch on her own. She wouldn’t connect with online communities. Too much demand. Definitely soothed her though.

I'm almost certain that there has been research, I'll try and find it if I can.

Rather than a nanny could you look at a private tutor? Lots of ex teachers, many with SEN backgrounds doing this. You could probably source one who would pick up daughter from school half day when she’s up to it and from there go to a historical local attention for the afternoon, down to a local park and discuss landscape formations, local library and read a book/magazine of choice or do some baking at home. They could offer a flexible tailored personalised learning plan. Most are self employed and many can be sourced through agencies if you want that security.

Hi OP. If this thread proves anything then it’s that there is no typical or average way that this will play out. Mild burnout will be shorter and a child can sometimes go back in a shorter amount of time in the right environment where their needs are really understood and listened to. Severe burnout is a more extreme matter and you are doing the right thing not forcing or pushing too much at the moment. You definitely can’t speed these things up. They will come out of it when they come out of it (sorry not that helpful).

I am glad you have recognised that it’s absolutely a case of ‘can’t’ and not won’t. It’s only by seeing this that you’ll be able to fully support your child. It’s a very different style of parenting but they need to see you are on their side and as others who have experienced this with their DC , push them and you run the risk of setting their mental health back significantly. My DD was off school in full autistic burnout for over a year (pretty much in bed depressed, numb and exhausted every day.. absolutely not in a position to learn or engage in much) I’d take all meals up to her and go up every hour or so - she would occasionally come down in the evening.

It was a very stressful time for all concerned… with suicide attempts and some very dark days / weeks …but I can’t stress enough how important the No / low demand parenting is for recovery (including access to screens) . It’s not fair to punish them for something they aren’t doing on purpose.

I was fortunate enough to have a hugely understanding employer- I worked from home pretty much for a year. But I know i was lucky.

Sorry I don’t know what the right thing to do is for your job. But you do have my sympathies. You need to get used to not knowing what the next step is yet. It’s hard and I know as adults / loving parents we just want a solution and to make everything ok.

i echo joining ‘not fine in school’ FB group as others have said. It was hands down the best resource and source of support during that time.. and also as others have said - read lots of stuff that Naomi Fisher has written.

Not exactly the same situation as you... but I have an autistic primary age son. Last year I did wonder if I had to give up my career. He was refusing to go in some days and it was awful. Your situation sounds like it has gone beyond that and I'm so sorry - it is so tough.

It's worth knowing, however, that we manages to get an EHCP. It took a fight, but only took 6 months from application to final version. This not only paid his school fees (private school he was already in) but covered loads of support (and we are able to top that up with whatever extra is necessary due to fees being paid). As a result, with the additional support, my son is now thriving as his anxiety had massively reduced.

So I'd recomend getting an EHCP application in ASAP. The extra support might make all the difference to your child, like it did mine. Your situation sounds tougher than ours, so I can't see why your child wouldn't be considered for one. I did spend a whole summer sorting it out though and fighting for it, so be prepared for a battle. Biggest learning curve ever, but worth it!

@lifeturnsonadime that is brilliant to read. Your DS is a real success story showing what can happen when DC receive the support they need. DSs are doing well, thank you.

Hi OP

I’m sort of placemarking here - autistic DS9 is struggling to get to sleep this evening. But I’m in a very similar position, and whilst we did manage to find an AMAZING nanny who was actually looking for a SEN family, she was not cheap and in the end my DM put paid to our plans to take her on.

DS is in a specialist private provision for autistic children and has turned into a boy who bloody loves going to school. I thought it would never happen because I’ve been exactly where you are (and made the excuses at work).

I will read properly in the morning and try to come up with something more specific. KBO. 💐

OP Good luck and take care of yourself, this is very difficult to navigate. There’s also an EBSA thread on here if you need support.,

Bit older for us but DD burnt out at 14, December 2022. I tried getting her in part time for about six weeks, with huge flexibility from my work. Then told school it wasn't working. I took 1 month off sick whilst we regrouped. Focus for DD at that time was basic self care and eating, no education, no pressure - she stayed in bed most of that time.

I had a phased return to work for another two months. DD started to engage with services but still no education. Secured alternative provision to start in September - online / at home. Managed to return to work full time but at home.

Applied for EHCP September 2023. Alternative provision collapsed. Back to no education but DD engaged in hobbies. EHCP approved September 2024. Specialist 1-2-1 education approved for October. Work let me offset annual leave hours against the time I needed to support DD. Temporary improvement Nov/Dec where I could leave her at home to log into her lesson whilst I went to the office. Anorexia diagnosis December 2024, back to reduced hours to manage mealtimes and wfh.

My employer has been massively supportive. I've been there 15 years and am a key member of the team and a line manager. I'm separated from DDs dad, so when he has her, I make up hours as much as possible - we're essentially tag teaming.

I'd investigate sick leave, parental leave (unpaid) and reducing hours before ditching your job altogether.

Chances of getting EHCP in place for September are slim but you could look into provision and fund yourself temporarily - it helped my case that I'd paid for a month myself and daughter had settled and was thriving. Apply now.

Look into things like equine therapy so child can do something for wellbeing each week once burnout has passed (burnout can take weeks, months or years - you can't rush recovery - chdck out Naomi Fisher's webinars). Use your council's local offer to find provision for education and wellbeing, have a look, find out which ones accept private funding and which need EHCP.

Ignore formal education for now - the environment is wrong, they've reached the point of no return. There are thousands of families across the UK in the same boat, no matter what the LA EBSA guidelines may tell a school, they are not designed for ND children and making home life horrible does not make the school environment any better; child just wonders why their safe place and safe people are no longer safe.

Keep their safe space exactly that, identify their needs - is school too loud, busy, confusing, fast - and advocate for an environment that suits via EHCP. It may not be a school! That doesn't necessarily mean home ed by you though, there are options out there.

Look into a PA for your child - if you can pay for a few hours a week that allows you to get what you need done. Also see if there are autism charities as they can provide guidance and services. If your GP has a social prescribing service, speak with them as it'll save you hours of googling.

This is so true. So many parents don’t know about the so called Children’s Wellbeing and Schools Bill currently going through Parliament and the detrimental effect it will have on all parents of school age children if it goes through in it’s current form.

Why don't you set a limit on it? Take a year off to help your DC, then get back to work after that. Personally I'd find it too stressful trying to manage both. My DC has a blip with nursery when they started crying every morning and I was so grateful I didn't have the stress and pressure of a job as well. I wouldn't outsource to a nanny, if your DC is having a hard time they need the support of their parents to help them feel secure

My child was older, however you have my utmost sympathy as its such a heart wrenching stressful time, the sick feeling in your tummy every morning when you wake up-dreading what the day will bring.
The bullet points you listed are right, it sadly won't be a quick fix.
If you haven't already done so I'd recommend Occupational therapy and speach and language assessments. They are amazing as identitying needs you didn't even realise were there and will help put strageies in place for emotional regulation and executive function.
I would start the prrocess of applying for an EHCP, sadly it's often a really long battle but if they end up needing a specialist school or even Education other than at school(EOTAS) then you will need the EHCP as costs will be high. EHCPs can also lead to private mainstream school but it's a battle to get it.
Work wise, I'm nowhere near your level but the flexibility you both have right now is amazing and I would not want to lose that.
Would sick leave due to stress be feasible? You will be very stressed right now.
Other than that can you and DH both go part time, so you only work 4 days each?
You will also both be entitled to unpaid parental leave so could you take that
https://www.gov.uk/parental-leave/entitlement
I wouldn't resign as you need your job, particularly as you have other DC in private schools and your job appears very flexible which you may not get else where. But completely acknowledge it's exhausting both physically and emotionally which is why a period of sick leave or unpaid leave may be better. Can your DH also share the burden of this?
One thing I learnt is to really limit talking about school, don't let it be in every conversation you have with your child, keep. everything light and low demand, just have a general chit chat about something you can see out of the window, something you saw in TV, heard on radio, holiday /day out plans, , family news type chat etc, their world can become very small very quickly so try and draw them.out of themselves.

It is so horribly stressful. The fear and misery of it all. The child wanting to go to school but can’t.

We were supported by a lovely nhs pyschologist who also supported the parents too. We used to hang onto those phone calls like a beacon of hope in the misery.

They do get better though. But no demands. Dd woukd cry when asked what she wanted for tea. I think they are like a wounded animal and know how to self heal. And they do it by hiding away. We didn’t set bed times or getting up times ( too demanding) she turned nocturnal. She was too exhausted to shower but a bath every other day was manageable. But again we left her too it. Sometimes teeth were the only thing that got cleaned. 18 months of just total nightmare.

She got better though. It still flares, but she’s on an access course now with 5 uni offers. ( mine burnt out 1st year of A level). We got an EHcp but it hadn’t been massively helpful. She’s OK though. Still often too exhausted to socialise but much much better than a year ago.

When she was getting better, her face changed from sickly yellow, back to the roses in her cheeks from when she was little. I call in burnout yellow. I just looked at her one morning and there they were. I’d almost forgotten she had them.

You and DH could both drop to 4 days a week. Then instead of hiring a nanny hire a home tutor who specialises on SN's and then instead of them being rewarded for not going to school but playing on their computer all day they could be having 1-1 lessons with SN tutor. A tutor wouldn't be too much more than an independent school place.

https://www.mumsnet.com/talk/special_educational_needs/5309128-ehcp-support-thread-no-5?utm_campaign=thread&utm_medium=app_share hi OP, just come back to say I run these threads if you decide you want to pursue an EHCP.

So I'm going through the process of autism diagnoses myself alongside my 7 year old who is a school refuser although we have been having success and actually he gets attendance certificates (not something i agree with but thats another topic)

What you do now can impact your child forever. Not to make it sound terrifying 🙈 it is a minefield out there and no one size fits all. The education system does feel against us. The ehcp journey is quite something.

So first things first compassion. A bucket load of compassion all round for everyone in the family. It's hard it's stressful and it's no one's fault.

What we have done is prioritise Everyone's mental health first. If I am disregulated or stressed I can trigger my child into meltdown we are like a family of domino's we all have the potential to trigger someone else and then we might all fall down. So we all need to learn and build our toolkits to regulate ourselves. We have to watch out for triggers. We have to pace ourselves and build into routine rest breaks less stimulating times.
Does you child have a special interest? Lean in to that. Animals and being outside are particularly wonderful but whatever it is books lego the same movie or program over and over can be just as rejuvenating.

I wouldn't rush to manage screentime. This depends on your child. Firstly observe them. How and what are they using screentime for. Does it tip over into overstimulating? Do they need help having boundaries and self regulating their use. Surprisingly my 7 year old is really good with regulating his use. He will pick being active and outside over a screen. So I don't limit use or ban them but I make the day (holidays and weekends ) have some other opportunities for activities and games and he will choose them. For a school day that he has refused if he is in burnout then he can do as he pleases its about him resting as much as possible and feeling safe. If he isn't presenting like he is in burnout then less screentime more of a structured day as if he is in school but with the option he can choose the direction of activities and light school work. Things like keyboard drums art exploring bugs in the garden.

Does your child have good friends or feel connected to people in school? The school day is so much easier when we feel someone is on our side. When we feel invested and connected that people get us.

Hobbies can also be a great source of connection and friendship as well as offering that balance to school being a difficult environment to manage but Saturday I have xyz club I'm nearly there. Just be sure to manage routine and no over scheduling.

I find approaching it like a medical need as in say you child has had surgery they need to recover for a while. Whilst school make the environment more accessible for them. So it's not bad behaviour or punishment it's compassion. And if school aren't meeting your child with compassion too then I'd absolutely no be afraid to take them out either find a more suitable place or home educate.

The biggest concern is forcing someone into a situation which is traumatising and intolerable,Affects your long term health severely. Last thing you want to do is for your child to want to disengage with the world so much they cant tolerate to be here anymore.

I wish i understood myself more snd those around me did too when i was at school. That it wasn't a deficit within me but an environment that wasn't suitable for me.

With regards to work don't give up. Money helps in this situation. But try for you both to be as flexible as possible wfh or less days. Maybe right now one of you needs to step back to get things in place so you can step back up at a later time. Definitely aim to manage stress. It is very difficult. Hopefully you have understanding workplaces and colleagues if not perhaps try and sidestep or change to find that.

I'd also really reccomend listening to neurodivergent women podcast it's been really helpful for me.

It could be in part finding a different mainstream independent school. My child is in a small, quite bespoke mainstream Indy with children who benefit from the small classes (10) and enormous grounds and broad holistic curriculum. It was funded by the LA without any battle on the EHCP. Mainly because my child had always been in independent education. The EdPsych report detailed a need for all the features that this school could provide which the local 1900 student state couldn’t.

we hit burnout in year 6. Did a part time TT that year with lots of juggling and then has been FT in secondary again. Were lucky with the timing of Covid lockdowns!

I work FT in a senior management role. I have been very open with my employer and they have been very accommodating so I have been lucky there. But I was honest and am valued at work.
good luck. It’s horrible at times. But lots of us get it.