ASD or something else driving difficult behaviour

[Keeponmovin123]

I am struggling. My husband is struggling. I feel my family is at breaking point. We have a newly diagnosed, 9 year old with ASD. First flagged to GP by us at age 5 after challenging behaviour (aggressive & violent, impulsive, emotionally dysregulated) since age 3. We had a post diagnosis catch up with a CAMHS psychologist this morning and my husband broke down in tears. Our resilience is at an all time low.

We thought things were getting better (e.g. stopping kicking/hitting us) but his behaviour has got a whole lot worse in the last year and the violence, aggression, defiance and 'meanness' are in full force. He often tells me he is doing certain things (e.g. refusing to get back on his bike during a bike ride, refusing to go to school in the morning, refusing to get in the car to pick up a sibling) to make my life difficult. Does anyone else experience this? Is this ASD or is it part of his personality?

His 10 year old brother often bears the brunt and can trigger him just by being in the same room. He had to lock himself in the toilet for 15 minutes with his brother waiting outside ready to hurt him last week.

Please be kind, I do know life isn’t easy for him but I have two other kids that should be able to feel safe and comfortable in their own home.

We do watch for triggers and try and prevent outbursts but he can be so mean and nasty to us over tiny things. And then on other occasions not be bothered by it. Recently if we are out of the house, he’ll just disappear when cross or angry so you end up with yet another ruined family outing. More recently we've stopped going out all together and separated into smaller groups. He is impossible to reason with at times, but on occasion is open to it. You don’t know what you’re going to get one minute to the next. The up and down and forward thinking and anxiety over simple parts of family life are very hard to live with.

I feel so alone and helpless. Some of my oldest friends know some of what has been happening as they have known my child since birth and witnessed some of what we experience. But I find it so hard to talk about without it sounding like I’m just a miserable mother. I feel unable to share the full extent of our family life because it seems so different to others particularly newer friends that I've made through my other two kids. I feel like I live two lives.

What do we do?
Has anyone received any help that has worked?
Why are things so much worse now and will there be any improvements as he gets older?
Has anyone received therapy themselves to help deal with this type of ongoing situation? Note I am not struggling to accept the diagnosis, it is more how his behaviour completely dictates how I feel and function. The daily emotional rollercoaster and its impact. Are there ways to stay calm and increase your resilience.

Thank you for reading

This sounds really hard for you. Could the refusal to do things be PDA (Pathological Demand Avoidance)? Definitely read up if you haven't already and see if it makes sense.

Often with kids like this I think it's a case of the straw that broke the camels back. So it may seem that today he can't cope with X but last week he coped just fine and that makes no sense. But actually it may be because today he was hungry and tired and something had happened at school and then X happening on top of all that was just too much and he lost it.

So I would say for a child like this that lots of down time/time doing what he loves (even if it's computer games that help him regulate), lots of (preferably healthy if poss!) snacks available, good sleep pattern - and routine. routine, routine. The more that he knows what's going to happen and when and that that is what happens every day then the easier for him. At the weekend as well have as much routine as possible. Also lots of warnings if things are going to change or if it's going to soon be time to do something new.

Definitely consider counselling for yourself, even if it's just as a safe space for you to unload.

Thank you for your reply @itsmyp4rty. I do wonder if we have PDA and ODD in the mix. And I definitely agree with the straw that broke the camel's back analogy - similar to the stress bucket. I think the expectations and demands at school have stepped up a notch and he is more aware of his differences compared to other NT children. Perhaps all of this is having a greater impact than we thought.