We can't cope - 2 years of screaming

[ThisIsMyStory1]

Posting here too because these boards can be so quiet.

DS2 will be 4 in August and we're seriously at our wits end. He's amazing in so many ways, he's kind, he's funny and he's so intelligent.

He's always been a screamy child, when he was a baby he'd have 3 hours of the day where he'd just scream constantly, we could never find a reason. He never had different 'types' of cry either, always the same one.

Since he was 2 he has this exact pattern:

• Run a bit whilst screaming
• Throw self on floor
• Scream 'OUCH' (he's often not hurt)
• Continue to scream for about 20 minutes

He does this about 30 times a day and that's not an exaggeration.

This will be from 'major things' like saying no to a biscuit or for things that make absolutely no sense. He'll ask for a drink, we'll say 'Yes, let's go get a drink' and ask him to come with us to get it (he hates being alone) then he'll do the screaming pattern. It makes no sense, he's getting what he's asked for. He'll do this over the most minor things and it's constant.

He's literally thrown himself down the stairs threw times now. Just this morning we asked him to go downstairs so we could get breakfast (which he'd just asked for) and he flung himself right under DH's feet, causing DH to fall down the top two stairs and roll his ankle. All the whilst DS is screaming blue murder.

Nothing gets through to him and we literally wince with pain because he's that loud. We have constant headaches and DH has lost hearing in his left ear. Everything is just a massive deal, stopping an activity, starting one, even doing something he loves makes us nervous because he'll end up shrieking.

He's zero concept of discipline, doesn't respond to shouting, time out, even being told no, he just doesn't understand. He's got basic language and commands but nothing what the average 4 year old should have.

He has been diagnosed with Autism so we know a lot of his behaviour is due to that but we honestly can't cope anymore and I don't know what to do. It's majorly affecting his older brother who is also severely autistic, we've had to implement a tonne of new sensory activities just to keep him calm.

I just don't know what to do. I feel like screaming at him (obviously won't) but I just can't even think anymore. We've tried hugging and holding him, but we can do that for 20 minutes and then he'll be smiling, break free and still run off and do the screaming. We've tried being stern, soft approach, praising him for not doing it, telling him it's naughty everything we can think of and more.

Has anyone got experience of this? Please don't say it's just a phase because it's been 2 years and basically since he was born, this is clearly just his personality now.

This is really difficult! Ds had no speech at all till nearly 10 so I'm very familiar with screaming unfortunately.

Few questions. What is his level of understanding? How verbal is he? Do you use visual aids?

It could be a stim, a response to not getting what he wants, attention seeking, not understanding your commands, sensory issues or a combination of any of the above. Figuring out the triggers is what will eventually help to hopefully reduce it. x

Hi @ThisIsMyStory1 I agree with @jellyfish1982. It can be very little change sometimes completely unrelated. My boy diet is strictly linked to what he watch on the day. It took me long time to see this pattern. There are sheets with sets of questions that help to investigate what can be influencing behaviour. I feel for you, im sure you will sort it though. Keep strong

He's got quite a lot of speech, especially compared to older DS. He understands a lot, he understands being told no, he's aware of his surroundings etc (he can read, he's very intelligent)

Which is what makes this more frustrating. It doesn't matter what we do, he still screams. He has no allergies, we tested for them all. He doesn't have milk anyway but he's got to have bread because he's a ridiculously fussy eater.

It's a stim, a behaviour thing, attention seeking and sensory issues all in one. He gets a tonne of 1:1 attention, lots of play time with other children and his brother. Has his needs met very easily as he can ask for things and understand.

I just can't take it anymore, I really can't. It's constant. There's not an hour in the day where he hasn't kicked off at least 3 times. Most nights he doesn't sleep or it takes 3 hours to get him to go to sleep, every time we ask him to get back into his bed he screams and cries, which wakes his older brother up.

We've tried putting him to bed first but he kicks off because DS1 is still downstairs. DS1 can't have anything, a drink, food, a toy without DS2 screaming and crying. He'll say please when asking for it but if not given he'll just ramp it up and up till he's screaming and then crying

I hope someone will come and give you some clever answer. I dont have that experience but would it be possible he is looking up on his older brother and wants to be like him, have same things. If his older brother have verbal stims maube he is seeing and trying to copy? Just a thought as your last paragraph made me think there might be something like that there. I have an 8 yrs old and he hates everything "baby" related as he wants to be considered a big boy..

@Hehx3 ah I wish, that's more for 'normal' children unfortunately :( it's literally just over duplo or a sandwich, there's definitely that brotherly element of 'he's got it, I want it' but much more intense. He's got a tonne more language compared to DS1. DS1 is basically non-verbal with little to no understanding.
DS1 growls and does little shrieks, I'd give anything for DS2 to copy that, anything

I hear you. His behaviour will be a habit and please remember each habit can be changed so its not forever, dont loose hope with that. Have you ever thought about having ABA consultant? I know some people are reluctant but even If you disagree with principles perhaps having someone with that background to properly identify this behaviour so you know where to start? I never did ABA but I found lovely lady that came for free, has spoken with me for couple of hours, sent some ideas and miracle happened-I could motivate my boy. Could you try local facebook parent group?

Have you tried totally ignoring him when he does this. Literally no reaction at all, totally ignore him. No shouting or reasoning with him. Totally ignore him till he stops then carry on as normal.
Particularly if it's at times a temper tantrum/meltdown as he's not getting his own way. Absolutely keep him safe but try keeping interaction to an absolute minimum. There's probably more than one part to it as is an established behaviour now.

Does he do this more when you place demands on him? Such as the coming down for breakfast example.

Visual aids can be great for children who have good communication skills as well. They can help to reduce anxiety around change/demands.

Have you seen a good occupational therapist or a slt who works with autistic children? Either or both of those would defs have ideas. When was he diagnosed? Could you go back to the diagnostic team?

Any access to council autism services through nursery or school?

Sorry, to answer some questions

• His EHC is currently being reviewed. I applied recently as he only received his official diagnosis in March and from experience, the whole thing is less painful when done with a diagnosis

• Because he isn't in any kind of school setting, we get zero support, he goes to a childminder (when there's not a global pandemic) for 2 days a week

• We don't like ABA, have tried it in the past and found it didn't match ours or DC's personalities

• We've tried ignored, not engaging, not even looking at him. Didn't work.

We've tried shouting at him such as, 'No, that is not good behaviour' We've tried understanding 'Yes, I can see you're sad, can we help? What would you like?' We've tried gently saying 'Please don't scream' We've tried 'I know you're upset, that's okay to feel sad, it will pass, Mummy & Daddy are here'

We've cuddled, shushed, sent him to his bedroom to de-stress in a calmer environment. We've given in, held out, tried to explain what's happening, tried to ask him why he's sad. Literally nothing has worked, nothing.

I really am at the end of tether, we can't cope anymore. I can barely concentrate and I work with Data so its impossible. Everyone we've tried to call has just said 'it's lockdown, can't help' but even before lockdown we didn't get any support when we asked for it

I know it's different in different places unfortunately but could you try contacting the diagnostic team? Did they not point you to any sources of help? Presumably they are the ones telling you nothing can be done in lock down?

How long have you tried each strategy for? For example the ignoring, you need to try it for quite a while to break what is now an established habit. But then you could be sinking loads of time into persevering with something that won’t work, especially if the “reward” he gets from it isn’t just coming from you, eg if it’s a stim.
I know this is stupid seeing as you have another DS with autism but in terms of requests/commands have you tried giving 5 minute warning? Have you tried holding his head (bizarre tip I got from MIL who works in SEN school)?!
With this kind of thing it’s almost like literally every time it happens it has to be met with the same thing eg taken to room and left to calm.

You say he understands a lot. Would he understand a social story about it?

Is there any music or loud sound he likes? Playing it through headphones or a speaker that has deep enough bass to vibrate may "override" some of the stimming need.

My boy does similar, it's very difficult. For him, when we got a loud Bose speaker, playing particular sound streams or music reduced his own noise-making a lot.

He is autistic but also hearing impaired but seems to need a great deal of auditory stimulation to be satisfied. He is auditory understimulated basically and the unintentional magic effect of his speaker was he reduces his own sounds to hear the satisfying noise.

A weighted blanket may help fulfil the same need that is satisfied by holding him.

It’s so hard. I remember my DS being very demanding around this age. Are you under the social Services disabilities team ? Have they done a family needs assessment? It sound like your mental health could be suffering, I would get in touch with your GP.

The only thing I found that helped my son at this age was lots and lots of physical exercise.