My 5yo’s behaviour is so difficult to deal with and I don’t know what to do

[Lafoosa]

My 5yo (6 in Dec) has such challenging behaviour, I suspect ASD but GP won’t give referral to paediatrician and has fobbed me off for ages. Moving GP soon so hopefully that’ll change.

Anyway, she has meltdowns constantly about everything and gets violent when she has them, screaming, hitting, punching, kicking, throwing stuff. She’ll regularly tell me if I don’t do exactly what she wants or give her what she wants she’ll be naughty on purpose. Obviously I don’t give in to that, usually she goes on time out if she starts that.
I’ve tried drawing journaling for her to draw her feelings, meditation, even got the Yoto cards for meditation and mindfulness for children. I’ve tried kids yoga on YouTube, 1-1 time where I sit and do an activity with just her and not her siblings, deep breaths, taking her to the side and having a conversation about why she’s feeling that way and behaving like that. I’ve tried removing TV time, time outs, reduced sugar (we don’t do sweets or juice because that stuff makes her so much worse).
Honestly it’s difficult not to shout at her some days, I know it sounds awful but it’s constant no matter what I try. She’ll meltdown over what she wears, eats, where she sits, going to bed, getting out of bed, needing the toilet, putting shoes on, what toy she wants, wanting TV, she screams at everyone and is a lot of the time not very nice to her siblings.
Even if she gets diagnosed I don’t know how to help, or improve things.

any ideas would be great, thanks

You are not alone. Sorry no advice.

That sounds exhausting.
Is she on any medication? Some have side effects that can cause behavioural changes... Montelukast / singular for asthma can cause anxiety and agression as well as sleep disturbances.

What does school say? What is she like at school?

My 2 can be like this and my only advice is to try and figure out the triggers. Try and keep a diary of the types of things that set her off to see if there’s a pattern. It will be useful later on if nothing else. Mine struggle with transition a lot so we need lots of warnings before changing activities or going to bed etc. Also certain times of the day when hungry or tired are worse so regular snacks/early dinner work better for us to avoid this. It IS exhausting and I sympathise as it’s really hard work. I just keep trying to be clear and firm about what’s not acceptable (hitting etc) and try and work with them as much as I can (giving choices helps a lot so they feel control) to avoid getting to the point where they have a proper meltdown. I’d also keep pushing with the GP. If 5 you may be able to refer via the school now. Paediatrician is for under 5’s only by us then goes via the school but could be different elsewhere.

Have you read any Mona Delahooke? That was the first thing I read which actually made any sense and helped. I did need more stuff on top of that but it's useful as a starting point.

I would look up as much stuff about parenting ND kids as you can even without a diagnosis - it's often helpful and it's very rare that an ND-affirming approach would be harmful if it turns out she is just struggling with something and will grow out of it.

@NatalieH2220 she just started a new school as the old one wasn’t meeting any of my children’s needs (eldest 7yo has an autism diagnosis, although her needs and meltdowns are a lot different).

she masks a lot at school, and I mean golden child, does everything she’s told, lovely to everyone. Has a meltdown as soon as she leaves though, I imagine masking all day is exhausting and she really struggles to pay attention. Hopefully after the end of this term school will know her well enough to be able to help.

@Elboob no medications, her health is otherwise great. She doesn’t go to bed easily and takes forever to sleep though, and she prefers to sleep longer in the morning which isn’t doable on a school day since she wants to not get up until 8:30 but that’s when school starts.

Hopefully they will help! My eldest masks at school too and although the school don’t agree with me, they did still put the referral through for us eventually

What is your local referral pathway for diagnosis? Here it has to go via the school really, gp can do the referral but they mostly get declined and they won’t see them without the paperwork from the school.

It could be ADHD rather than ASD - she sounds similar to my 7yo DS and he was assessed for both, they said only ADHD.

He has sensory issues, meltdowns, particularly after school, but also struggles with attention (unless it's on one of his special interests) and if he's dysregulated he will do whatever gains him attention no matter what kind of attention it is - it's exhausting. He isn't on medication but we are having some success in trying to balance his day with activities which are regulating. It's been a bit of a relief over the summer because he struggles SO much with the school environment. It's going to step up this September too (we are abroad) and I'm anxious about how he will cope with it.

He doesn't struggle with sleep but my older son who also has ADHD always has - it's like his circadian rhythm is set for night to be about 2am-12pm, always has been. I am the same, but medication has helped me with this. I didn't realise that it wasn't normal to be able to completely dress him and carry him downstairs still asleep and he would only wake up when I wheeled the buggy out of the front door. Now he just drives everyone mad by setting 20 deafening alarms at 5am and sleeping through all of them, although he also takes melatonin to help him feel sleepy at the right time.

DS2 doesn't mask at school but DS1 did - he's always been a model student. It took much longer to recognise that there was something going on with him, I just thought it was normal and/or that I was terrible at parenting I remember with him, I used to dread the summer holidays because the two of us one on one was always a bit of a nightmare scenario.

@Lyocell she just switched schools this term so I’m waiting for a while for them to get to know her before asking for help with it.

In her old school she didn’t pay attention, or do they work, but was otherwise well behaved. I kept saying to them I suspect Autism and or ADHD. At home she won’t even sit and do her homework because she just acts silly and won’t sit down and go through it with me. This has resulted in her being behind in phonics and counting, she still can’t get up to 20 because she gets confused at 19 and then goes to 100.
her previous school didn’t do anything and just said I wasn’t trying hard enough with her at home.

I’m hoping the new school is better in this regard, but the entire county each school only has 1 senco per 60 children so it’s a bit dire for school support.

@BertieBotts yes I have thought it could be ADHD multiple times, I have ADHD too and she’s quite similar to how I was as a child - although I was less meltdown prone. But that might just because my parents were very heavy handed in the discipline department and I would’ve gotten a physical beating if I’d behaved that way - I didn’t even know I had it until I was 22 and started an access course, my tutor kept hinting at it 😅

what sort of activities do you find regulating for your son? I know it’s different for all kids, but I’m lost at what else to try now.
I’ve also got a 7yo, two 3yos and am 7 months pregnant so trying to juggle time between each child is a challenge

I used to find stroking my DD’s hair or nose at that age helped calm her down. Shes ADHD.

I’d maybe try and reduce demands on her, pick your battles and reward the good.

@Lafoosa Each primary school usually has 1 SENDCO. For hundreds of dc! Whst they do have are TAs and maybe that’s who you mean. Schools very much vary in what they can afford. Schools were given devolved sen budgets but it’s too small for the vast number of sen dc we see these days. However classes in KS1 should have more TAs and it’s worth asking school about how they deploy them.

@TizerorFizz yeah I think I meant TA’s, there’s just not a big enough budget in any of the local schools for more TAs, they’re overstretched and even in the schools here that have good SEND provisions in their ofsted reports only have 1 per every 60 children.
They don’t have the funding to hire more either, it’s a huge problem.

For DS2 it's all about balance - so he can't stay at home all day doing sedentary things like Lego and TV and colouring, he really needs to get out, get some fresh air and movement (what they call "heavy work" is really good for him).

But he also struggles with being asked to do too much/too many demands and being tired . It's helpful for him to have some time where he can be in control/manage everything that he's doing easily, so letting him have some time doing activities like Lego and computer games is helpful.

He finds wheels very regulating - he has always, since he was very little, liked to lie down on the floor and drive toy trains/buses/cars around and watch the wheels. He loves trains/buses in general and this is very soothing for him.

Screen time can't be too much in one go but he also struggles with being asked "suddenly" to get off, we have got into setting timers at the start and going with that.

Sometimes he just needs connection so I'll sit with him and do lego/colouring/read/etc. He also finds it very soothing to be contained in a small space. And he finds deep pressure very soothing - we play the "sausage roll game" where we lie a single duvet on the floor and then they lie across the short side and we roll them up tight and then pretend to chop them, put in seasoning, eat them etc.

Hi, I totally hear what you’re going through with your 5-year-old’s behaviour. I’ve been there with my 6-year-old, and found that alongside the usual routine/chore charts, one thing that really helped was doing a short “feelings check-in” together at bedtime.
We started using a simple children’s journal (just 2–3 minutes) where each evening I’d ask them: “What was the best bit of today?”, “What was tricky?”, and “What will I do tomorrow to feel better?”. It didn’t fix everything overnight, but after a few weeks I saw less meltdown time and more moments of them naming emotions rather than acting them out.
If you ever want a journal designed for this kind of thing (PSHE/SEL style), I found one that’s really good (based in the UK) called The Mindful Explorer. Might be worth a look if you want something structured. Wishing you lots of luck, you’re not alone in this.

Take all demand off. But keeping her violence under control is a must

She has to get some ot. That's for sure.