Supporting a Sibling While They Parent a Child with Autism

[WorkLifeCaregiver]

My nephew is 5 and awaiting an autism diagnosis. He’s currently in a mainstream school, but the situation is heartbreaking. He’s being shut in a 'nurture room' (which is basically a cupboard) and segregated in a fenced-off area in the playground. My sister and brother-in-law are fighting to get him a SEN place, but the process feels like it’s taking forever.

It’s been so tough on them trying to juggle work and parenting while dealing with the stress of fighting for proper support. I’ve seen how much harder it becomes when workplaces don’t offer flexibility or understanding for parents dealing with situations like this.

Have any of you faced similar challenges? How do you advocate for better support—both at school and in the workplace? Have you found employers willing to be flexible or organisations that really understand these challenges?
I’d love to hear your thoughts or experiences. It feels like so many parents must be navigating this kind of struggle.

What form does their fighting take? Are you looking for advice to pass on? It would probably be kinder to ask them what would help than try to gather others experiences.

Sadly, the best way of securing support is by learning the law and enforcing it. And knowing not to trust what the LA and some schools tell you.

Where are they in the process of securing a special school place? Does DN have an EHCP? Are they already in the appeal process? If they don’t already know about them, it can help to direct them to ISPEA and SOSSEN. If they are already in the appeal process, do they know about Parents in Need who can help fund independent assessments.

What support is DN already receiving? Shutting DN in a cupboard sounds dreadful. It smacks of discrimination.

Do they already get DLA for DN? If not, let them know they can apply and Cerebra’s guide is helpful.

Have they requested social care assessments? If not, they can. Contact is a charity who has model letters on their websites.

Do they have a blue badge for DN? If not, you can let them know they can apply.

Do you feel able to offer to look after DN at his house, your house or taking DN out if appropriate?

I think just giving them a break so they have time to learn the system/respite is the best help. Finding out what their rights are for them if they have little time.

If they have a tribunal date for an EHCP (if they are at this stage) that is far ahead they can ask the tribunal to bring the date forward via a SEND 7 form. My severely autistic son was in mainstream for reception and they were bloody brilliant, he had a lot of outside time,which sounds like segregation, but he really needed it. They need to speak to the SENCo about possible options for him. Does he have 1 to 1?

Have you complained to the NHS trust about the delay in assessment? Once you go through the complaints process it might bring the assessment forward of you state how it is impacting everyone (I don't know if this is the case BTW, so may be a waste of time). Getting the Ombudsman involved too after you have been through the complaints process possibly (again i dont know if this works, just an idea worth researching). Find out what the target is for the NHS trust for assessment and if they are breaching this. They might publish this online, or the complaints team might find this out.

DLA is assessed on need, but we waited for an assessment to avoid the usual DWP bullshit, plus the EHCP provided a lot of evidence for a claim. They still fucked us about though.

Is your nephew awake at night? Our son wakes alot and never goes back to sleep, even at 1am. This us what killed us. Melatonin didnt help us, but helps a lot of people,so demand it from the consultant at assessment. If they have a child at the severe end of autism and he eventually gets awarded higher rate care DLA (night needs), they also get an extra child disability payment if on UC. This might help cut hours down or afford them a bit of flexibility at work. It's worth plugging their income into a benefits calculator.

I'm not an expert on this as much as BigYellowTrain but I can tell you how our experience panned out and what helped us. PM me if you want. Unfortunately you have to throw your weight around a lot to get stuff done with SEND, don't be fobbed off.

@Porcelainpig has DS been referred to a sleep clinic? There’s lots of other medications to try if melatonin doesn’t work.

In case it is relevant to anyone, those eligible for UC get a disabled child element with any rate of DLA. Not just high rate care. It’s just those with HRC get the severely disabled child element.

We are exploring that, but consultant is very reluctant. I have come across families that haven't even been offered melatonin in my area with similar issues. Sleep care for ASD children is poor here, not sure if other areas are the same.

Thanks for putting my post straight (I'm not my best at the moment) there are two tiers to UC if you have a DLA award. Was trying to get across that it could be worth the OP suggesting they should try seeing what they get if one of them cuts hours as there may not be a huge drop in income. Obviously wages and savings come into this.

@Porcelainpig you could request to go out of area to a sleep clinic and complain, then complain to the ICB, if refused.