Suspected ASD non verbal.

[m9coxo]

Hi. I think I have posted in the right place.

My LG is 3.5, awaiting ASD assessment but is non verbal and has high care needs. I have posted a while back but I was told I was dramatic and overbearing on this app, but I won't go into that. Mother's intuition is best.

We are having non stop meltdowns. We were in hospital overnight a few weeks back for cold sore virus, to which she was on a baby bottle for comfort/regulation. Now, she won't touch it. She's agitated and especially at night time/mornings. As this was her soother she would go to sleep with it and wanted it first thing in the morning.
She has become aggressive. Not just to herself (SH) but to us. I have tried everything suggested.
Can anybody please suggest anything out of the ordinary?? I have tried everything they advise you too and even bought an egg chair (which she loves, not so much during or before a meltdown)

Thank you if you take the time to read this and comment.
From one worried mama.

My little girl is partially verbal- same age as yours and has extreme meltdowns. I’ve bought a black out tent for her to sit in when she explodes, and if she’s attacking myself or her siblings I wrap her up right in a blanket until she calms down but she does smooth material on her face when soothing.

she also likes sensory water play that calms her down sometimes too, I think sometimes you just have to get them into a quiet safe space and just let them regulate if they can. It’s so so hard, a few weekends ago I broke down and was at breaking point and my Hv this week has asked for a specialist health visitor to come out and see us. Is this an option for you ? I understand you op, it’s a lot and sometimes when they have these extreme meltdowns and upsets you really do get lost and get stuck on what to do. X

@Thirtytwoinsidethesunset thank you for the reply.
Yeah I have tried water play and the tent. Unfortunately it seems like she gets so upset she doesn't want to calm down, as if she has to see it through. Last night resulted in passing out asleep on the floor rather than the bed.
It can be so hard for us but even harder for them. A lot of my LG's frustration comes from being non verbal but shows no interest in communication cards unfortunately :(

I have no advice just want to say I'm going through the same thing with my 3 year old autistic son. I'm sorry, it's so hard xx

A friend of mine had the same with her son, and she tried calmify magnesium through iherb and the changeover was rather miraculous.

An SLT recommended that another mother carrry bubbles in her pocket, so when the child has a meltdown, she can distract him.

Oh bubbles is a good idea, Op if it’s any help it might not be we used the traffic light cards for transition to different activities. Sometimes they work others they don’t, the picture cards we’ve had no luck with. It is so so hard.

I'm pretty sure I've read that with an autistic meltdown they just have to go through it and there is no distracting them or placating them back out of it - that's how you tell that it's not 'just' a tantrum. It might be better to give her space alone in a dark, cool place if she is safe - as although this goes against instinct as a parent with an upset child it might help her come out of it quicker if she is feeling overwhelmed. Instead of fighting it, perhaps try to reframe it as something she needs to do and let her go through it and come out the other side.

I wouldn't worry if she likes sleeping on the floor, not unusual with some autistic kids. She may prefer a hard surface for sensory reasons. I would say be prepared to change all your ideas on what kids like and how to parent them! With an autistic child all your preconceptions can be blown out the water! You sound like a great mum.

@Lexie365 @Pumpy001 @Beth216 @Thirtytwoinsidethesunset thank you all for your replies, and suggestions. I will be trying them! It's nice to know people are in the same boat (as awful as the boat is.)
It's nice to be in touch with those who understand and don't judge.
I get so many looks walking down the street if my LG has a lump on her head with a bruise from head banging. I just think, they definitely take my age into account of their opinions. (I am 23, with a 3.5yo and a 16 month old.)
Thankfully nursery have been amazing and are in the loop. She broke up for summer yesterday, so I'm hoping she won't respond too badly to the lack of routine!

It’s a very steep learning curve so don’t be too down on yourself.
I think that once the point of overload/meltdown has been reached there is often not much you can do and although our natural instincts as parents is to try and console, talk, cuddle etc that can often make things worse by overloading an already overloaded child.
Sometimes in these situation all you can do is make sure they are in as safe an environment as they can be and leave them to it.

What I will say does help is to try and identify any potential triggers - look at everything - illness, temperature, are they thirsty? do they need the toilet?, has a routine been changed? and keep data on all this to try and identify any patterns.

If you are able to identify triggers then there may be times when you can act quickly to stop a meltdown before it happens.

Things like bouncing and spinning can help regulate a child but if they have reached a point of overload then it can actually make things worse. Our child would often be helped by getting in the shower although it was sometimes a battle to get them in there.

As a pp has pointed out when you’re dealing with a non NT child then all normal rules go out of the window and you have to do whatever works for YOUR child and YOUR family.

Are the meltdowns new/have they worsened since the hospital admission? It isn’t uncommon for DC to take time to recover from a hospital admission.

If DD is headbanging regularly and leaving bruising, have you looked at a protective helmet?

As well as a referral for an ASD assessment, has DD had a referral to SALT and OT? Not all areas commission sensory OT on the NHS, but if your area does, it is worth looking at this too. You could also request a referral to a sleep clinic. There will still be a waiting list, but it may be shorter than the list for paeds/CAMHS (whoever undertakes ASD assessments in your area).

Some people find The Out of Sync Child and The Explosive Child books helpful. Also, this booklet.

Has an EHCNA been requested?

Have you tried keeping a detailed diary to spot triggers and try to de-escalate before you reach meltdown?