I can't cope with my autistic son

[Pinacolada81]

Please help, I am at the end of my tether. My son is 5 and isn't diagnosed yet but it's very obvious that he has ASD. His behaviour has gotten so much worse over the last 2 months to the point where I constantly want respite from him and don't know how to deal with him.
All day long all he says is No to me , to basically anything. He doesnt just say No, he says it in a really annoying way, which when you hear it all day is just so draining.

He plays the same game over and over from morning to night and despite me hiding it and trying to distract him with other stuff, he literally walks up and down the living room asking for it until I can't listen to him anymore and end up giving him it and the cycle starts again.
I now can't get him to go to school or to put his uniform on, or to go anywhere really. I try to be patient and use bribes and not raise my voice and do the whole, first we do this, then we do that but it doesn't work. Then as a last resort, I end up having to physically lift him out of the house and put him in the car, all while he's kicking and screaming. It's absolutely awful, and I've had to do this 3 times in the last couple weeks.
It is his way or the highway and there is no talking to him. He can talk but his speech is delayed so can't express himself fully.
His dad and I are separated and he takes him 2 to 3 nights a week, he doesn't apparently behave like this with his dad just with me.

My parents are elderly and can't really help out. I have asked for a Special Needs assessment to get help from a Social Worker but because he doesn't have a learning disability and is in a mainstream school, they wouldn't help.

I love my son but I can't stand him, his Autism is getting worse as he gets older. I dread when his dad brings him back and secretly hope that he keeps him for longer. I love when he's not here , it's like heaven. He aggravates me so much, all the little things he does just grate on me and I know he can't help it but it doesn't make it any easier.
I feel trapped, noone knows how to help me. I'm his mum so it's not like I can just not have him anymore, I'm on anti depressants but they aren't making any difference.
Any help or strategies would be greatly appreciated, thank you.

Sending hugs. It's hard. Extremely hard.

I've noticed a huge decline in my DS behaviour this past year but signs of ADHD and ASD, SPD, OCD, PDA have been there his entire life.

I cant offer much advice as I've never known any different. I dont get much respite from my son and when I do I really dont know what to do with myself because its how my life has been, 100% him. But please don't take that as a criticism to you as I have often had to take myself away from my son when he is 'on one' and cried and cried about how hard and trapped I feel in my life.

I adore him but it is a huge frustration that I get the worst of him! His school isn't much help as he masks. He does display things at school but they are subtle in comparison. This is where my anger lies as the criticism I have had because our accounts are vastly different, they attack me and blame my parenting. As a totally one parent family doing me absolute flipping best for my son and never doing anything for myself this hurts me greatly. I have been fighting for support and diagnosis his whole life. I desperately wish he would behave how he does with me, especially at school. The mask has started to fall with others outside of school but school he is 'a wonderful boy', but I'm finding alot of contradictions in what they are saying. Basically he is doing things but they are hiding them. His meltdowns at school are rare but when they happen they are extreme, but still they aren't connecting the dots!

I'm not saying he isn't a wonderful boy. He really is incredible and deep down I admire him for how he lives in a world that I cannot help guide him through. But I have massive frustrations for the lack of support to parents who face this behaviour at home and they get criticised and blamed for it!

Alot of the behaviours you describe I have at home too. The only comfort I can really offer you is that you get this version of your child because you are his safe person and his home with you is his safe place. When this was explained to me if totally changed how I viewed things. It didn't change it happening but I knew it wasn't because of me buy more because he can be totally himself around me without fear of being different.

I work in a SEN school. I can promise you now alot of parents cannot believe their children's behaviour is so different at school to home. You are not alone.

Sorry I haven't been able to directly answer your question but didn't want to read and run.

x

Has DS seen SALT and OT?

What are the school doing to help? Does DS have an EHCP? When was DS 5?

I have asked for a Special Needs assessment to get help from a Social Worker but because he doesn't have a learning disability and is in a mainstream school, they wouldn't help.

By this do you mean social care assessments? (A carer’s assessment for you and an assessment via the disabled children’s team for DS.) If so, complain as having a learning disability and being in a special school are not part of the criteria.

Also request and Early Help Assessment. The questions are very invasive BUT they have been phenomenonal and so supportive. I self referred and was terrified. From first contact I knew they were a support than something to fear.

Also if you can self refer to SALT and OT. For my son OT is through school and SALT was a self referall

My heart really goes out to you. My son was showing signs from around age 3 -4 of autism and on referral from nursery I took him to health visitor for review - we went into a tiny room packed with toys and he played away with them and she told me the nursery staff were being dramatic. When he went into p1 just before he was 5(September birthday) and progressively got worse with the meltdowns, not wanting school, playing me & his dad off against each other (we are separated)... took a very long time due to covid, we got a diagnosis of asd and sensory issues. Now I find I have a lot more patience with him (I.e I always just thought he was a brat). You definitely should not feel bad wanting your own time, i certainly do enjoy my tine. It is hard & especially on your own. Hang in there dear, I still feel bad when my son clings to me not wanting to go to school or his dad's, but it's a whole different ball game as it's no kicking an screaming match and it's definitely easier as time goes on. Just remember you are the one person he trusts & the more he kicks off with you it's because he loves an trusts you. Thinking of you as know how difficult this stage is.

Read up on PDA it’s not easy but basically it’s anxiety and wanting to be in control. Only as you say he’s demand avoidant And uses NO a lot…. Read PDA society they have a website
Don’t lift / drag him into school - he doesn’t want to go as the needs not met ….. talk to the senco at school - only take him if he wants to go - nearly the end of the school yr.
Apply for EHCP yourself.
Join Facebook groups.
I’ve found the best support with another mummy with her child adhd/ASD as we both got what school trips meant for our kids - I’d reach out to another sen mummy within the class …..

Can you ask his dad to take him more. My DD can have epic meltdowns and I resent her dad for barely having to deal with it. Is your relationship such that you could ask him to keep your son for a few weeks?