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Where does “bad behaviour” end and autism begin?

9 replies

Veebs21 · 22/08/2022 18:08

DD is 4 in September and diagnosed autistic in April. We are on holiday at the moment which of course brings around a lot of change to routine, but also a lot of fun and things she loves to do - swimming, going to the beach etc - just lots of time dedicated to her, basically (DD2 just has to tag along for the ride, bless her!). Which of course means the things she wants to do have to come to an end at some point too. And that is a nightmare.

We do all the countdowns/visuals etc but honestly the meltdown we’ve just had because the swimming session was over makes me dread taking her again! At the moment there just seems to be brief moments of calm where she is getting her way followed by tears and meltdowns until she gets her way again! (Have I just described parenting? 😂)

I know autism makes the changeover of activities hard, but I also wonder can some of this be young child stubbornness at wanting their own way too? And if so; how do you cope/manage it to try to prevent/lessen the severity of them in the future? I try to parent gently and explain as much as possible before things happen and afterwards, but although she is verbal, I don’t think she’s able to take it on board, even with pictures/visuals.

I’m still learning so please be gentle with me if I’m saying things wrong - I’m not looking to “discipline” or anything but wondering if there is a line and if I’m making things tougher for myself by giving into her all the time and letting her have her way. I don’t want her to have to have meltdowns, I know they’re hard on her too, but NT kids have tantrums all the time - do I need to allow some to happen? We used to rely on distraction but she’s even wise to that now and will just scream NO in my face when I try to offer the distraction (lolly, biscuit etc usually!)

Help!

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openupmyeagereyes · 22/08/2022 18:41

We had a difficult phase where ds hated things ending before he wanted them to, and I have had tantrums in the swimming pool too and had to carry him out of friends’ houses etc.

IME it’s a phase that passes, though it might be a long phase. Warn her in advance what will happen and then continue to do the countdown as you are. You could continue to offer an incentive for her compliance (screen time, ice-cream - whatever works), tell her about this in advance too. Then you just have to weather the storm. We do not have this issue now but I continue to warn in advance and do the countdown.

I don’t think you’re doing anything wrong, you just need to wait for the developmental stage to pass but maybe someone else has better tips!

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openupmyeagereyes · 22/08/2022 18:43

When you do the advance warnings and countdowns, make sure you know she’s heard. Touch her shoulder or whatever to connect with her.

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Choconut · 22/08/2022 18:48

It could be either but I'd still treat it in the same way - calmly and consistently. I wouldn't give in whichever the case is (because often you can't ie at the end of a swimming session) and it will be more confusing to her IMO if she gets her own way sometimes and not others no matter what is causing it. That's how I handled things my ds with asd anyway and it worked (although i didn't know he had asd at the time). Advance warnings ie we will be leaving in 10, 5, 2 minutes are vital IME and made a huge difference to DS.

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Scratchybaby · 25/08/2022 14:24

This is such a great question! My DS is a little younger but we're in the same quandary. Where is the line between typical threenager stubbornness (and need for structure and boundaries) and ASD-related rigidness or sensory overload which should be respected and worked with rather than against?

I'll read this thread with interest as I definitely haven't found the right balance yet!

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openupmyeagereyes · 25/08/2022 15:22

Personally, I don’t think there is such a line. The autism is woven through the fabric of who they are and as such affects behaviour and development. Autistic people are all different so it’s impossible to say this is the autism but that isn’t.

Lots of autistic kids (not all, of course) are emotionally immature and this means that the ‘toddler’ type behaviours persist for longer and can be more intense. They have social communication differences (hence the diagnosis) and can struggle to understand the perspective of others, or see a need for things that are a given for NTs.

Many autistic adults talk about being in a heightened state of anxiety all the time. It’s not that any one thing or another is perceived as a threat, necessarily, but the very fact of being ND in a NT world. Anxiety can trigger the flight/fight/freeze response but it’s commonly interpreted as defiance or non-compliance.

My advice would be to pick your battles. You cannot parent in the way you might have expected and you need to work out what’s really important, or a safety issue, and what’s ok to let go for now. I really recommend the books Declarative Language Handbook and Co-Regulation Handbook.

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Veebs21 · 25/08/2022 16:10

As ever, I’ve had such great advice, that’s really made me think & helps me as I navigate this very new world of ND parenting. Thank you! And glad it struck a chord with you too @Scratchybaby ❤️

@openupmyeagereyes It’s great to hear you’ve experienced it and moved past it now - someone did tell me we are really in the thick of it at this age so I guess part of it is strapping in for the ride and letting it be! Thanks for the perspective check too. I think I’m going to be better with visuals - I’ve downloaded a now and next app which might be easier than carrying a whole load of little cards with me and inevitably not having the right one for the right situation! Have seen a visual timer too, which I might try, we use my phone timer for an audio timer at the mo but a visual one may work better. The shoulder touching is a good tip too, thank you x

@Choconut Yes that’s exactly the thing - some things are unavoidable aren’t they. Coming off the swing in the park is another one, when other kids are waiting. It sends me into a panic wondering if we are going to have a screaming fit or not!

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openupmyeagereyes · 25/08/2022 16:32

You can try social stories for things like turn taking (eg on swings). Carol Gray is the best source for looking at this. Play turn taking games and activities when you can. You might need to start with them having more turns, ie 3 to your 1 and work towards alternate turn taking. It all takes time.

IME some things get easier with time but are then replaced with other issues. I’m happy for those people who have ‘arrived’ and no longer in the woods. We’re still in the thick of it with other things Grin

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NTho · 28/10/2022 15:56

Hi Veebs, I have a daughter very similar to your daughter in behaviours. Wondering how you are getting on? We live in Hampshire/Surrey border and would love to connect.

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Veebs21 · 29/10/2022 12:13

Hey @NTho, will drop you a message 😊 x

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