High functioning autism meltdowns

[nad79]

Hi everyone. My 4 year old son who I am pretty sure has high functioning autism, had been having massive meltdowns recently and I wanted to see how common it was and what to do. We are in the process of getting him diagnosed but it's literally taking years because Barnet are so rubbish. Anyway at the moment he wants to come first at everything and win at everything. If he doesn't, he has a massive meltdown which involves him trying to bite himself and anything he can see, screaming,'crying rolling on the floor. I don't let him get involved in games where there is a winner, but even if he is on his scooter and someone scoots ahead of him, he goes into meltdown mode. I mistakenly thought he would be ok for a ballet and dance class as he loves music and I didn't think we would have a problem. However 2 mins into it, the instructor chose a few kids to get up and dance. My son went crazy because he was told it wasn't his turn and he needs to sit down. He lost all control and got unbelievably angry, shouting horrible things to the other children. Saying I want to smash you all and break you so you can't dance. He's not an angry child at all, but it's like he feels that he is being treated unfairly and is genuinely hurt by whatever happens. I can see he feels confused and hurt and then he gets angry very fast. He also then goes on about what has upset him for the rest of the day. Sometimes it can go on for days where he remembers it and then gets upset again.
It's making me scared to take him to certain places. We are supposed to go to birthday party on Saturday and they are doing party games. I can take him because he will lose the plot when he doesn't win and then I have to take him home. Maybe it is just a phase? I hope so. Thanks, any advice appreciated.

I wouldn't take him to the party, it will only add to your feelings of tension when he is in public and teach him to fear these situations. Try meeting people in small groups where you can more easily manage his expectations and tailor it to his needs/resources.

It will get better. Ds liked small soft play parties at that age, but games with winners and losers were too much for his fragile sense of ego. By the time he was 9 he was beginning to cope with team games, if that gives you an idea of how long it takes. By 10 he was loving football in a managed scenario with a coach, but still not coping with a real game, strikers, defenders, goalies etc. He played part of goalie for about a year to manage his expectations around that role for example, and then he was able to cope with a game where he didn't always have the ball.

Social stories also help - try googling them. Where you talk through events before they happen and so it is not such a shock when things don't turn out the way he thinks they will...ie we will scoot down the road and sometimes one person overtakes the other, then the next time you might overtake them. For him it is not fun, it is a bitter test of his abilities, and he thinks everyone is judging him or testing him on these, it is like being a hypersensitive perfectionist.

Anyway it will get better, I do promise you, just don't make things difficult for yourself at this stage by asking him to do things he is not ready for. Remember that a small intense experience may be enough for him for the whole day, he may not have the ability to cope with more than that. I remember ds being happy as anything at a Drama Club pretending to be a space man aged 8, then collecting him and taking him to a friend's house to bounce on the trampoline, whereupon he immediately melted down and said everyone was being mean to him...this is free play, no pressure to perform..and he had got through 5 hours of Drama club (holiday course) behaving beautifully to other kids and teacher. that sums it up really, they have a limited capacity to cope in socially and sensorily demanding situations.

I wouldn't take him to the party either. We've recently had an invite to a climbing wall party (for a 4 year old) DD is 5 and has asd and mobility issues, the invite said there would be a 1 hour safety briefing before the session - DD would have had enough 5 minutes into that!! She wouldn't have understood it and struggled with the climb itself. Soft play is best at this age - freedom!!

We go through regular meltdowns - though ours are sensory overload/masking all day at school - meltdown at home/demand avoidance. We're always one step away from a meltdown in this house!

I avoid anything competitive with my 5 year old as he can't handle losing. I wouldn't take him to a party.

How I've been working on it is letting him win races and other competitive things where you can be sure of the outcome. This has reduced the stress around competing. Then I've been modelling being a gracious loser. We've got to the stage now where I can say I'm sad I've lost and he's said he knows what that's like as he feels sad. Recently he's been letting me tie for first place with him. Obviously this is all still under his control but it's a long term aim of him coping with losing in general. The spiky profile of autism means that while a child can be on or above their level for x, they can be significantly behind in y, so it's best to deal with it at the age they're presenting rather than chronological age.

Thanks so much for your replies. I need to find some social stories, I hope that will help. It does seem like it is going to take a long time for my son to understand losing. Thanks for sharing your experiences. Nad

DD was like this a LOT when she was younger. She has improved, still has her moments but its not so constant as it was. But even now, it is still "right back in the moment" when she thinks about incidents, and it is hard for her (age 11) to focus on the whys and what happened rather than simply being angry about it.

One thing that really helped her was to reduce her overall stress levels. Sounds odd. But it's a bit like, she had a petrol tank of ability to cope - when she was stressed, that took a lot of the petrol so she only had a small bit left over to deal with any new thing happening so meltdowns came very quickly. But when her overall life was calmer and more relaxed, she used less petrol dealing with the everyday stuff so had more petrol when she needed the boost from someone else winning or hearing an extra loud noise that hurt her ears or having to do something difficult in class....

We did things like tried to make sure that when she was having fussy times with food, we didn't focus on that but made sure there was some food she would eat. She was allowed to go into a quiet space away from the bustle of home life, cool and dark and calm, either to chill normally or especially when meltdowns were happening. We worked on relaxation techniques with her, and did things like rubbing her back (soothing) or letting her have long baths and playing with her rubber ducks (water soothes a lot - but sometimes showers can feel like needles on her skin so baths tended to be better). We tried to have clothes that were comfortable to her - soft tracksuits, cut out labels, seamfree underwear etc. Fidget toys to get anxious energy out. And reassuring her that we loved her lots - spending time with her, getting her to help with chores working together, reading to her in bed even long after others her age were not getting stories, even now she listens to audio books or talk radio in bed, that sort of thing.

Parties were problems for a long while. We found she wanted to go but they were hard for her. So we went to some but not others, choosing smaller group ones (not generally whole class ones), activity ones which weren't competitive (but fairy princess ones would be hated so more sports type activities), and those of her particular friends. And we'd let the parents know to call us early if need be (we'd often hang around locally if we thought there may be issues). Sometimes, and having forewarned the party parents, we'd arrive late or plan to leave early.

And for her own parties, we learned to outsource. So holding the party somewhere away from home, someone else "ran" the party, and both DH and I would be there - 1 would be minding everyone else, and 1 would be minding DD. So if any other child needed a drink, the loo, whatever, that parent did all those jobs, and organizing food or party bags or whatever else was needed. The other parent was able to so some stuff, but if DD needed a few minutes she came to that parent, and would leave the room for a walk, maybe get a drink from a dispenser machine rather than her bottle inside the room, or just sit on that parent's lap for a few minutes - just able to offload from the noise and the bustle of everyone else. "Allowed" to duck out for a few minutes, being told in advance she could, and then being able to go back in when she felt ready - so the petrol tank (of energy to cope with everything) was refilled before it got empty. And that made a huge difference as she KNEW herself she could leave, and that there was someone there just for her (ok I had more to do as DH wasn't there to put out plates and be ready when they came up from the sports hall - but DD enjoyed her day and so did her friends as there were no meltdowns!).