Struggling to cope with autistic son

[Beckyleese28]

Hello I don't normally write here, however I feel I need some advice or support. My youngest son has autism/PDA and is nearly 13, over the past 6 months he has been refusing to go to school, he also gets so violent and triggered by certain patterns or lines/stripes. He gets triggered by the doors, walls,TV, pavements, windows anything with a straight edge of line. Due to this over the past week he is refusing to come out of his bedroom or open his eyes! He says everything triggers him. He seems angry and grumpy all the time! He throws things, hits, kicks, breaks things, shouts and screams!! My DS just seems to be on a decline quick! Is it since being out of school? Do I force him in or not? Is it teenage hormones? I just need some advice as I have never heard of this kind of thing before with autism or special needs. I've contacted his school (hesin a special school) they don't seem to be able to help. The local authority don't seem interested. I'm really struggling more and more as time goes on!!!

If DS is unable to attend school the LA must provide alternative arrangements to ensure DS receives a suitable, full time education and anything specified and quantified in F of his EHCP. If this isn’t being provided email the Director of Children’s Services informing them of the situation and requesting provision. If that doesn’t work email again threatening judicial review. If that fails contact SOSSEN for help with a pre-action letter.

You should also request an early review of DS’s EHCP. What therapies/support does the EHCP currently include?

You can request social care assessments, a carer’s assessment for you and an assessment via the disabled children’s team for DS.

Has DS had a home OT assessment?

That sounds difficult OP. What support have you got access to? Is he under anyone health-wise or is there a specialist autism team in the LA? Even if you only have a GP, I'd try and get some clinical psychology input, including liaison with the school.

Usual advice with a demand avoidance in an autistic profile would be not to force but to facilitate indirectly. Can School work with you and DS to establish a very gentle plan to gradually build up tolerance to return in baby steps? There's likely to be a lot of anxiety in the mix.

That sounds awful. I would possibly investigate with a neurologist - it may not be the case, but could the lines be triggering seizure activity?

Or maybe he needs glasses?

Thank you so much for all your support and advice. I will most definitely give the neurologist a go, that's very interesting thank you! And glasses could also be a possibility, as his brother wears glasses! Also to floating bean I have contacted the local authority staying what you said and they rang me back this morning to bring forward his review of my son's ehcp! It was great to have insight into other people I could contact e.g the director of children's services, these types of things have never been suggested to me, it's like they tell me nothing!!! Stopthepigeon I completely agree about not forcing my son with his PDA traits, and I've been thinking myself that a psychologist could give some insight! Seriously to all of you thank you!! I've had more information and advice here within 24 hours than off any professionals in my son's life. 🙏🙏🙏🙏

Good luck @Beckyleese28. It's not easy.

A couple of random thing I've found helpful - apologies if you've come across them already:
Understanding Pathological Demand Avoidance in Children is a really great book, especially to support practical discussions with school.

ACAMH Webinar on emotionally based school avoidance

@ststopthepigeon thank you so much you really have helped so much and give me food for thought. Currently at the moment it's 6.55am and DS is already screaming and angry kicking the walls and said he wants to punch me in the face and saying everything is triggering him...so I've put on the monitor and camera in his bedroom and come down for a coffee to try and keep calm while until it subsides (normally takes about 20 mins until the next one lol) trying to have a positive outlook today and not get swallowed up with anxiety and stress. Thanks again Hun 💓

You're doing well. I'm sorry you're going through this. My only other advice would be for you to find some earplugs to help you cope with the noise and stress.

@Gardenoverflow thank you, I don't have ear plugs but I do have ear buds I put in on low and listen to music or YouTube, it keeps me sane. The good thing is when hubby is home I have an hour to myself I go have a bath and relax 😁 any advice and motivation you have is wonderful, it really helps, I've never felt more alone in my life. I was always an extrovert and a free spirit .... But now I've lost nearly all my friends and hardly get out, I feel like a shadow of the person I really am. Im one of them kind of people who always looks cheerful always smiling and I mean literally and I'm just losing myself bit by bit. My DS is my world through and though but wow this is the hardest and toughest battle of my life. Thanks again ❤️❤️❤️

I've just been threatened for talking to the cat, so I feel your pain when the level of agitation and irritability in responses to every day things, is leading to frequent and explosive aggression. In DS's case this is linked to a very high level of anxiety about going to school, which makes the hour before he leaves tricky. Puberty has definitely made this worse.

I'm sorry to hear about the impact on you. And I know what you mean about how this changes life. (However much we understand the origins of our children's difficulties, just living with a level of aggression in the environment has consequences for how our own nervous systems work). Personally, I talk to a counsellor to keep sane and have found a RL group of parents. This sort of behaviour isn't discussed very much by that group but at least there is some mutual understanding there. The other thing that everyone recommends is Ross Greene's book, The Explosive Child, and Yvonne Newbold's content on Youtube and her Facebook group. Very best wishes - it is really hard, although hopefully will get a bit easier with age and the development of their executive function.

As well as holding an early review of the EHCP the LA should be providing provision under s.19 of the Education Act 1996 and anything specified and quantified in F under s.42 CAFA 2014. Does the EHCP contain any therapies?

A home OT assessment will help. It can help to make the home better meet DS’s needs and safer. It could also look at e.g. a Safe Space bed.