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!

Some kids get a hormone surge between 6 and 8 that can make them more prone to emotional outbursts and increased anxiety. Its called Adrenarche.

Does it matter if he cleans his teeth in the dark? Could you possibly sleep in his room for a night or two? In all gentleness, why fight against him on these things? Are they that important?

@Vladandnikki I hope it's not that, but thank you for the suggestion!

On hormones actually, at the very start of all this about a month ago I thought it was a development leap because he also suddenly started being dry at night (has still been in pull ups at night) and was getting up to go to the toilet - and then needing us to help him get back to sleep. But just as we were about to make the switch to pants he stopped wanting to and has now gone back to pull ups at night. So there's definitely some other stuff going on. I'd forgotten all about that at the start with all the craziness lately!

@Charlingspont Teeth - we still brush them for him and he jiggles around a lot and we've nearly poked him in the eye a few times!

Sleeping in his room, I really don't want to. It's a box room and there's not enough space for another mattress, he's still in an extended toddler bed. We've just ordered him a new bed actually and I will be able to lie down in it with him and then get out again. I love him, but I don't want to be in there all night! I know it probably sounds mean, but I feel like I need to preserve some sanity, and I want to have an evening to myself downstairs and sleep in my own bed with my husband!

Christmas can be like a different planet. High expectations and so much change. Even if it is enjoyable it still places massive amounts of demand.

The list of expectations he has is a list of demands.

Watch window of tolerance by beacon house on YouTube.

He might also benefit from some coping strategies.

Turn the light off.

If he's struggling and needs to brush his teeth in the dark just let him. Let these little things go to keep him calm. He sounds overwhelmed and it can definitely be cumulative.

Are you staying with him as he goes to sleep for the moment?
It's sounds like he could have developed a fear of something if he doesn't want to be alone. Do you have any idea what it is?
Anything he's seen on tv or something at school or something a relative said maybe. He sounds frightened. Can you get to the bottom of the 'bad things' he wants?

@Whitegull Yes one of us sits with him while he dozes off. For a while he liked to go to sleep himself, actually asking us to leave! But it seems to have gone totally the other way. He got quite fixated on worrying about bad dreams coming true, but we can't get him to explain where it's come from. When we asked if any of his bad dreams HAD ever come true he said "no" and looked very puzzled!

I think the 'bad things' is stemming from him calling himself bad (we don't use that term) when he's having a meltdown. He will often say "I'm bad" or "I'm a bad boy" which I think is his way of seeking reassurance that he isn't, we obviously always say "no you're not, you're finding it hard right now and that's okay, we know you are a good boy who tries so hard, we love you" etc etc. I think he has quite a negative perception of himself with meltdowns unfortunately :(

“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.”

This actually sounds exactly like a clear example of masking. I would encourage you to stop thinking along the lines of ‘high functioning’, because I think it can lull us parents into a false sense of security. My DD has a recent diagnosis, and they described it as autism with no learning disability or something like that. What I suspect would have been described as high functioning autism previously. IMO the expectations on a child to remain high functioning could place quite a burden on all of you, and the reality is he will struggle at some times throughout his childhood/life.
We’ve recently heard about low demand parenting too, and it’s helping us all massively. I hope it brings you similar relief.

I work with young people with autism and we find ABC charts really helpful to help determine triggers. A = antecedent - so what was happening just before the meltdown; B is behaviour - so what is happening during the meltdown itself and C is the consequence - what happens afterwards. You can Google for a more detailed explanation or I’m happy to send you a chart template if you pm me. They really help to establish patterns and help
you notice things you may not have noticed before.

Awwww! I really feel for him, it sounds like he's just a bit overwhelmed at the moment! I think the fact he's gone back to pull ups at night is a good indication that he's overwhelmed. The lead up to Christmas is just way too much. My eldest is awaiting diagnosis, but I'm basically certain that she's autistic. She was just unbelievably difficult before the holidays started. Thankfully, the never ending rain has meant we've mostly just stayed at home this entire holiday, and she's slept in every morning. It's definitely been hugely beneficial to her, as she's calmed down a lot! I'd suggest having zero plans between now and school starting, and just try to let him recover at home. Also, can you talk to him about how he's feeling, in a supportive way, when he's calm? My daughter will often tell me how she's feeling, so long as the conversation is short! The big problem I find, is that she herself is too young to really understand what's bothering her.

Please don't punish him by removing time on the switch for having a bad meltdown. If he is melting down he can't help it so punishing him won't do anything to stop his meltdowns and if anything they will make them worse because he knows if he doesn't stop he will loose his switch which will add another factor of overwhelm to the situation because he can't stop and that will make him even more likely to meltdown.

He is getting overwhelmed with something. My guess is the whole lead up to Christmas then Christmas and new year has filled his overwhelm bucket.

Some really good advice on here. I must read Dr Naomi Fisher! OP my DD is 5 & sounds quite similar to your DS although she has now stopped attending school as she was becoming so overwhelmed. The school weren’t meeting her needs & she ended up burning out. We’ve been following low demand parenting for a while & limiting our social commitments. It felt for a while that things were improving & DD was coming out of her burnout. Over Christmas however she has become very dysregulated again with lots of shouting & meltdowns & just wanting constant screen time. DP thinks since she stopped attending school her world has become smaller & she’s now addicted to TV/ the iPad whereas I’m wondering if she’s needing more screen time to regulate herself after Christmas. I really don’t know but it’s been so stressful lately with the meltdowns despite us feeling we weren’t putting many demands on her. Perhaps it is all the expectation of Christmas & then the anticlimax now it’s over. It’s really hard being a parent & knowing what to do for the best.

Please don't punish him by removing time on the switch for having a bad meltdown. If he is melting down he can't help it so punishing him won't do anything to stop his meltdowns and if anything they will make them worse because he knows if he doesn't stop he will loose his switch which will add another factor of overwhelm to the situation because he can't stop and that will make him even more likely to meltdown.

Agree with this.
Meltdiwns are different to bad behaviour and he shouldn't be punished for not being able to cope.

This sounds very useful.
However another thing to be aware of is that if a child has become frightened of something, then sometimes thoughts associated with the scary thing can just pop into their head in the middle of doing something else. So it can be hard to figure out what's going on.
(And the child may not be able to articulate the fears or may be too scared to talk about them.)

One thing we missed several times at that age was illness. DS didn't seem to get fevers like other kids but whenever we had a particularly difficult week, we would then find out half the class was off with lurgy. With hindsight he probably had tonsillitis for weeks before I twigged and took him (looking ridiculously well) to the GP. Always consider illness or pain . Toothache, UTI, earache etc - symptoms aren't always as clear cut as you'd think. And with a child called "high functioning" there is always the risk of overestimating their abilities at things like interoception, executive function and expressive communication. If any one of those links falters, he can't even tell you that his throat hurts.

I'm not sure if this will help for next year - but my autistic DC didn't enjoy Christmas at all until we told him Santa isn't real. It was a massive source of stress for him:

An unknown man watching your behaviour to determine if you're naughty or nice.
He apparently sees you when you're sleeping and knows when you're awake. Bedtimes were tricky at the best of times without this added stress!
You write a list of things you'd like, but there isn't any guarantee that you'll get any/all of them. Presents are then wrapped so you still don't know what's what- then you have to react in the right way when you open them.

Nope.

Once he knew it was me and DH in charge of Christmas he was like a totally different child at that time of year

Hi OP, my youngest is like this. Remove all demands and let him keep the switch or give him something low demand to earn it back. Screens can help our ASD regulate so I only remove my son's iPad as a last resort.

Is there a possibility of a couple of days chilling at home? Sometimes it's needed to get back on an even keel. Sometimes at this time of the year sensory issues around coats/new winter boots and hats come into play. It's so hard sometimes though.

My son is 7.5 now and getting better at verbalising his needs, but it can still catch us unawares at times the things he will suddenly struggle with.

Not criticising, but I sometimes think it's odd that as a culture we insist an anxious and frightened child should sleep alone while we happily sleep with our partners.

@Charlingspont I totally get you - and the only way we ever got any sleep ourselves was to let our DS sleep in our bed. His own bed is just decorative now.

But it was HARD to accept this. Not just because of ‘meaningless societal expectations’ etc etc (which is what SEN parents are often told are the only reason we ever do any of the things our children struggle with - as though we are just thoughtless automata) but because parenting in the way that I do, to accommodate my child's needs, means that so very few of my own needs are ever met that losing the possibility of cuddling up to my own partner felt like the last nail in the coffin of a life of my own. I’ve lost my career, my social life, I spend most days being climbed on and sat on and jumped on and talked at endlessly - and I don’t get a break or any fleeting moments of separateness even when I’m sleeping.

So I think it’s perfectly OK for a parent to find this very hard, and not unreasonable to want to have some boundaries / privacy / intimacy - some tiny bit of life that is just hers. Not everything is a pointless act of callousness towards frightened children. Sometimes we’re just trying to stay as alive and sane as we can.