Autism / anxiety meltdowns 9 year old

[wobblymum1]

Any help would be so so welcome here ☹️
my son is at final stages of assessment for a diagnosis of autism and anxiety. i am struggling so much as while waiting for the diagnosis there is no support. He is incredibly anxious, hates me leaving the house, self harms when anxious (scratching arms / hands until they bleed) hitting and punching his head…..threats to Kill himself. These meltdowns can last for 1-2 hours and scare my 6 year old and leave me aged 10 years older with each one. School are supportive but hands tied until diagnosis, Same with Gp. Anything can set him off. when he’s calm he cries, telling me he hates how he is and it would be better if he wasn’t here ☹️Which as a mum is heartbreaking to hear. Im just lost as to how to help him. I’ve tried being calm, sitting out the meltdowns, being cross and shouting (always makes it worse). I just don’t know what to do and can’t plan any nice days out as he hates them, his sanctuary is his room and he hates leaving it. He’s only 9 ☹️☹️Any and I mean any tips would be so welcome. Thank you.

Really hope it gets better OP. I had a rough day with my autistic child, so sending some solidarity.

My only two bits of advice from our experience would be to reduce sources of stress and keep a routine. So perhaps always going for a social thing on Sat afternoon with the place you are going decided the day before. Noise, smells, sleep, social demands, school stress (an inappropriate demands at school) can all contribute. The trigger thing that sets off a meltdown is rarely the main issue.

Hi OP, that sounds tough. Whilst I appreciate that official support mightvtake a diagnosis to access, you can start to do things to support autistic children now. It wont hurt you child if they turn out not to have autism.

There are lots of things around sensory stuff you can look at. Also look up social stories. Another big thing is rehearsing events before they happen.

Your child is probably exhausted by school and might well need a rest at the weekend to decompress. Can someone watch them whilst you take the others out?

Also check out Newbold Hope (yvonne newbold) she has lots of advice for challenging behaviour around finding out the cause and what to do.

Thank you both so much, I’ll look into all this. I feel like I’m lost and not helping him at all and this is really helpful and supportive

Have you seriously considered home education?
If he is using more emotional energy to attend school than he can replace, he will burn out (as you are seeing).
Once you have removed as many other demands in his life as possible and it isn't enough, unfortunately something else will need to give.

I’ve not really been able to, he’d love this but I am on my own and work full time from home to pay the bills so just don’t think I could make it work to have him home all the time as I wouldn’t be able to work. He definitely uses up energy at school all day trying not to worry and fit in as best he can.

School need to be more supportive, their hands are really not 'tied' until you have a formal diagnosis, they are expected to make all and any accommodations as though the child has ASD if you are on the pathway/being assessed.

In the short term you probably need to reduce demands (and school need to support you on this) as much as possible so that the anxiety reduces, whilst keeping a diary of the meltdowns so you can start to work out what is triggering them. How is he in the school day? Is he 'masking' and then letting it all out at home? If he is then it may be worth looking at the resources at the PDA society as they are slightly different to other ASD strategies but could work for your son.

In our experience 8-10 was really the worst period for our DS but things have got better since then (and with diagnosis).

I've got a 9yo daughter and what you're going through sounds very similar to us. Although we're a long way behind you in the waiting list.

It's so difficult managing the meltdowns, they can go on for hours. Luckily we are receiving a lot of help through CAMHS and speech and language therapy at school. We're also waiting to receive early help from the GP while we're waiting for a developmental assessment. It's worth pushing the school to provide more help.

We've been going through CAMHS therapy service and undertaken 2 courses in managing anxiety and managing challenging behaviour. It's not a miracle cure but a lot of it has helped such as special time, creating a worry kit, a safe quiet space to go when calming down required. We're also working through this book which was recommended and seems to be helping. My hidden chimp.

www.amazon.co.uk/My-Hidden-Chimp-author-Paradox/dp/1787413713/ref=asc_df_1787413713/?tag=googshopuk-21&linkCode=df0&hvadid=310561939160&hvpos=&hvnetw=g&hvrand=15679568945142882942&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=1002316&hvtargid=pla-584102337747&psc=1&th=1&psc=1&ref=d6k_applink_bb_dls&dplnkId=1ec4fa92-0078-4440-b8c5-6cf37db70dbc

What are the triggers op?

some Ideas to help sooth generally - weighted blanket, heavy rucksack to help ground, a soothing quiet activity once home after school with zero demands, routines using pictures and ordered by him so he feels he has some control, walk home after school, breathing exercises to calm, sensory fidget toys in school, a safe space in school where he can stay if stressed, a named person he can talk to if stressed, shoulder massage, audio books, long bubble baths, find something he can hit (a pillow, punch bag, a soft toy?) or something he can throw (soft foam balls).

stick with it and push the LA for a more suitable education once you’ve diagnosis.

We have this with our 8yo. We saw a therapist for a period last year which really helped, mostly focusing on naming and understanding feelings (his and those of others). Discussing the diagnosis helps too, mostly because it gives him some anchor points for what he’s going through.

for my DS it helps to have activities that I know will allow him to centre himself during a meltdown. Good ones for us are colouring (me and him together), Minecraft, some tv shows, sometimes reading. I do just sit it out sometimes, and will say things like ‘I’m ready for a cuddle whenever you are’

We have also struggled with transition, especially leaving the house. I tend to not tell him too far in advance that we are leaving (even to the point of saying ‘we are not going anywhere at the moment’ when helping him to get dressed). I find that making the transition as low key as possible helps.

a lot of what goes on in meltdown looks like rewarding bad behaviour but really it’s not. It’s more like throwing a lifeline to someone who is stuck in fast moving water.