High functioning ASD meltdowns

[RainyDayBear]

Bit of an ‘end of my tether’ post here, optimistically hoping for more traffic than the SN boards. My DS is 6, has been diagnosed with high functioning ASD and is generally quite an able, happy, largely great kid. Historically he had a lot of meltdowns when he was younger, has struggled with transitions and inflexibility a lot generally, but otherwise copes fairly well with life. He’s a happy, chatty, intelligent kid, adores his sister, settled and does well at school in mainstream etc.

The last month has been horrendous. It’s like a switch went off and he has been having meltdowns galore. One really bad one at school where they rang me to collect as it was so severe. An awful one at bedtime last week where it took DH and I two hours to settle him - he was trying to break into his sisters bedroom and sleep in her bed! An awful half hour of hitting and kicking me at an attraction he loves visiting yesterday, and a hour one at bedtime tonight because he wanted the lights off while he brushed his teeth. He tried to shut me in the bathroom, told us he hated us, that he was bad, that he only wanted bad things (all in a growly, angry voice).

At first we put it all down to Christmas and the excitement and went to our usual coping strategies of making lists, a gazillion warnings about everything, very clear consequences about losing time on the Switch for any more violence. But it just feels like something is actually wrong - this is not my kid 90% of the time and these meltdowns were once in a blue moon - if that - until a month ago.

The only other thing that’s happened that is probably linked is more anxiety type behaviour, he won’t settle to sleep alone, doesn’t like being in any room alone, has got hysterically when I won’t sleep in his room etc.

Any advice from anyone experienced? DH is doing the Cygnet course this spring, I’ve just bought a copy of The Explosive Child to read. I came across mention of probiotics on various websites so I’ve gone and bought blooming Yakult today! Literally open to any suggestions. We are still under a paediatrician but I’m not sure what they could do. The school SENCO is good and I’m wondering if there is any other support we can be signposted to, but not sure what. Nothing has changed in our family or anything, it’s really bizarre!

Any suggestions or words of wisdom very welcome!

Check out Dr Naomi Fisher.

Low demand parenting strategies, low stress environments , regulation needs to be a key focus and understanding triggers is vital. In my household, a trigger can be a 'funny smell' (sensory overload) loud noise (hearing sensitivity) losing something important (tiny bits of Lego inducing massive stress response) and so on. We work to try and reduce impact on our 2 by getting in front of these things as much as possible- but inevitably they'll be new hurdles/ changes etc that have to be considered.

Given the season the first suspect would be the demands and excitement and changes and unknowns of Christmas.

Imagine he has a cup and he is fine till
it is full but once it is full the next time something is poured in there is a big mess.

Make some space in his cup by reducing unnecessary rules, deviating less from comfortable routines and adding in a restrained number of ‘treats’ (changes/demands). Not enforcing socialising with visitors. Encouraging down times in front of tv or whatever.

And honestly why could he not clean his teeth in the dark!? He might be experimenting, playing or feeling sensitive to bright light but doesn’t sound like naughtiness that needs a No?

@OneStepOn Thank you, I haven't come across her videos so I'll check them out :) I think the most frustrating thing is that often there are no obvious triggers, it's like a switch just goes. I think we already do a lot of anticipating things. He's quite an articulate kid, but he can't put his finger on what causes it afterwards either.

@WhichPage He jiggles around a lot when he brushes his teeth, we've managed to actually poke him in the eye a few times by accident which he's understandably been upset by. Doing it in the dark is just asking for trouble!

I think we've done quite a lot of that, deliberately kept it fairly low key, lists of expectations for each day. Doing a few activities this week as he's off school, but they were all things he wanted to do at places he's been before. Quite a lot of down time too! At least it reassures me that we're doing the right things at least.

What has helped us -

Sensory light
Door open
Bright corridor
Blanket over his head to sleep with
Weighted blanket on legs
Supper
Bath
Read time
Stick timings same time - 15 mins warning going to bath - then bed then chat then read

Anything on tv that's made him "scared" even random stuff - we went through a phase of this.

Try and work out the triggers - that is massive - my son can be triggered by the eldest girl 🤪 we try to keep them separate

Use pda techniques - missing the mark on insta

Good luck not easy

Get school on board - need an EHCP ? Apply as a parent takes forever! Dont trust school

Oh and my child has brushed his teeth in the dark laid on a teddy 10 mins ago - don't stress over the small stuff. Lights can be sensory and too bright. If they brush their teeth it could be anywhere for what I care 👍

Once back into the routine hopefully things will be ok x

Look up pda techniques they will help any ASD child and benefit them 👍

It sounds to me as though he has got too much on, if you know what I mean. You know that way where you have a thousand things to do and you are just ready to go in the garden and scream aloud. But with him it might be different things that are overwhelming him and there's basically zero chance that he is going to be able to articulate what those things are. You may need to do a huge amount of detective work.

My 13 year old is having a similar bad patch and I figured out eventually that the school were using horror in the powerpoint slides and had just totally maxed him out. He had told me, but I never would have believed it until I actually saw the slides.

You might need to work shadow him for a few days and watch his reactions really carefully to spot what's going on.

I'm ASD as well, and my triggers can be quite strange things, that nobody would ever notice.

For example I had a hard time for years because the bath water in our rented house smelt funny. It was only when we bought the house and had the central heating system replaced that we found out that there had been a leak inside the hot water cylinder and we had been bathing in central heating preservative or something horrid like that. It turns out that I could have a career as a sniffer dog if I wanted it, but most of the time it just means that smells really bother me and nobody else can smell them.

It might be that your son is overwhlemed with to many thing to do, or it might be the sensory stuff. You might just need to follow him around for a bit to work it out.

By that age, we had bought an electric toothbrush and ds was brushing this teeth in his own.
He had a light coming in when pressing too hard. We reminded him that too hard wasn’t good but not hard enough didn’t work either so to look for the light (he was very good at putting it in his mouth but the brush hardly touched his teeth).

Fir him, it was extremely hard in a sensory pov, esp if I tried to do it for him (try to have your DH brushing your teeth, you’ll see). Much better if he had control over it.

@fedupallthisrubbish Thank you, I used to wonder about PDA when he was much younger pre-diagnosis, less so now he's older but I'll absolutely re-read some of the techniques, that's a really good shout.

EHCP is a whole other thread. School don't think he needs one, but I will absolutely be applying at some point. I'm going to give it another year or so to get more evidence as largely he has coped well at school and academically there aren't any gaps (it's just socially and emotionally). But I think this time next year I'll be gearing up for that (I've only just finished the DLA renewal paperwork, I can't face any more admin for a few months!), want to give myself enough time for appeals etc to try and get it through ready for secondary school. He is, thank god, in a brilliantly supportive primary school.

Seconding Naomi Fisher. Also join the FB group The B Team once you’ve read The Explosive Child. It is a fantastic group. You are spot on that this is not ‘behavioural’ and won’t be solved with rewards / sanctions. When he’s having meltdowns he’s having a nervous system response he can’t control.

Christmas - and any other holiday, special event, departure from the usual daily routine - throws a massive spanner in the works for my DS. Too much expectation, too many surprises, too many people, too much change. And that’s just the stuff that goes on at school. We’ve learned to keep our own Christmas as low key as possible.

When my DC is in any form of burnout he can’t cope with activities he’s specifically asked for and normally enjoys. It’s like being taken out to your favourite restaurant when you have a migraine - the whole thing just feels like torture even if you’d normally like it.

Also for PDA / low demand parenting techniques check out AtPeaceParents on Insta.

@KeepTrying0 Thank you! That's really interesting to read your experience. I might try keeping a diary for the rest of the week and see if we can spot anything.

@JustExistingNotLiving We've offered that before with teeth brushing, sometimes he likes to do part of it and sometimes he doesn't. I think we do need to build up him doing them more himself.

It's tricky!

Buy Laura Kirby pda book - it's the best £10 you will spend I've got hundreds of books haha

Ipsea has a template letter for a parent to apply for EHCP.

I wasted years teachers don't believing me 😂 but teachers aren't qualified to diagnose! Even the super experienced ones with 20 yrs plus didn't spot it.

Parents always knows best 😘 x

I think Naomi Fisher and the Explosive Child are good calls and properly look at low demand parenting. I think you need to properly scale back demands to almost nothing if its needed. If this is a change, it's possible the past month has just caused burn out. Does it matter if he brushes his teeth im the dark? Or even doesn't brush them for a day? Can he possibly sleep on his sisters floor? Please don't think that you are failing by 'giving in'. You need to reframe your idea of what parenting is and it will be uncomfortable because it goes against the grain and people will disagree but it works and is what is best for your family.

(Also, my DS brushes his teeth in the dark in bed, and needs his feet to be just the right temperature before he can do so! I’m so interested to hear this is a thing with others as well!)

@Bunnyhair Thank you! I'll join that group. I hadn't actually considered that he might just be in a type of burn out from all the Christmas crazy stuff at school (that he wanted to be part of, and enjoyed doing at the time). We deliberately kept Christmas quiet, turned down invitation to PILs (which they didn't understand because DS goes there, knows the house etc) and just went for a calm Christmas at home. Largely Christmas Eve and Christmas Day were fine, it's the other days around it that have been a car crash here!

I've noticed my kids with asd have bigger and more meltdowns when they're going through a growth spurt, learning a new big skill or have something new and unexpected in their daily routines. I find giving them each a private space to escape to helps hugely. A blanket draped over the table or between armchairs is good. Only trouble is catching them just before the meltdowns! Really, really long baths with bath crayons and action figures seem to help in these phases too. It's so hard when they struggle, make sure to give yourself a calm down time after he goes to bed!

It’s ALL about cumulative stress. That’s the biggest thing I’ve learned since my DC was diagnosed with at 4. There can be specific triggers sometimes, but the big crises come when there have been too many stressors/demands (even happy ones!) for too long. It’s not unlike having a nervous system condition like ME, where there is a very delicate and unpredictable balance of how much capacity you have - and there can be ‘flare ups’ where for no discernible reason you just can’t cope with as much.

@Junobug I've said a hard no to him sharing with his sister or even sleeping on her floor, although DH and I discussed it because he's struggling with anxiety around sleeping and being alone. I feel mean, but it's not right for DD. She's 8 and didn't ask for this, she already tolerates a lot from her brother with utter patience and as DD's Mum I have to make sure she has a space that is HER space.

Thirding Dr Naomi Fisher and seconding https://www.instagram.com/atpeaceparents?igsh=MW5jNXo5d203Zjhmcw== and look for PDA tools. My little one also brushes teeth in bed, though currently with light on. He recently started putting his feet in the Lego box whilst in bed and when I expressed my worry that they might get damaged or the box might fall over he explained that he was Lego massaging his feet. Which made sense! I haven't tried it myself, but he finds it relaxing. No particular feet temperature needed - but in bed he often likes to heat up one side of his body whilst cooling down the other ! (Using hot water bottle/taking off covers or clothes).

@Noorandapples We did wonder about a development leap, I've just never known one to be as lengthy as this one. Kid had better be solving algebra and reading Shakespeare by the end of it! Thank you. I tried talking through with him about things I'd written down that he could do if things felt overwhelming. He hid under a blanket and said he didn't want to listen. I said "DS brilliant, hiding under the blanket is actually the third one on my list, good job doing that..." I hope at some stage he is self-aware enough to know when he needs to calm down and how to help himself do that.

@Bunnyhair That makes a lot of sense to me. There was a LOT in December (Christmas performances which he wanted to do, Christmas fairs, etc) - I hadn't considered that it might be a cumulative effect. I'm definitely going to remember that for next year and possibly plan things differently.

Thank you everyone for all the replies - I honestly really appreciate them.

@b0zza1 Thank you, I'll look at that! Bless him, I know what he means, I like running my hand through the lego.

A really helpful boundary to have with him is ’me things’ and ‘other people things’.

So he can choose for himself to clean his own teeth in the dark. Equally You can choose not to clean his teeth in the dark. So if he wants it dark he does it.

He can choose to let someone sleep in his bed.He can’t make someone sleep in his bed. He can’t choose to sleep in someone else’s bed. They get to choose that for their own bed.

I found identifying ‘whose problem is this?’ really helpful. It stopped me getting involved where I wasn’t needed, and allowed me to keep my own boundaries firm around my child. He doesn’t get to clean my teeth, bite me, pull my nose, stop me reading my book.

I wonder if his ‘fine in school’ really has been fine or just masking. It was around this age with the increasing demands that my autistic child stopped being able to cope. Your son sounds like he is highly dyregulated, my gut would say the cause is school. Lots of highly intelligent autistic children need to be in education other than mainstream for social and emotional reasons. Not all children in specialist schools are academically ‘behind’.

Is he just starting to realise he is 'different' from his peers/siblings? This can be really difficult for them to process and might be contributing to additional meltdowns etc

@pickledandpuzzled Thank you, I really like that way of thinking! I think I'm going to try and use that going forward.

@Dancerprancer19 Honestly I think he largely enjoys school. He loved learning phonics and all the rules, he's one of the top readers in his class. He adored the Great Fire of London project and excitedly gives me a blow by blow account of the DT project each time he does it. I genuinely don't think he masks. Most of the time he is quite compliant generally (I know it really doesn't sound like it from my post) and really good natured, it's like it's suddenly swung wildly the other way for no apparent reason. I do still think a mainstream setting is right for him at present.

@Twitch45 Possibly. We've got as far as talking about his brain being different, and how that affects different people differently. He doesn't really like talking about it!