Autistic/ADHD teen son not leaving his room

mum07Skye

Hi,

I’m struggling with how to support my son. He wasn’t diagnosed until he was 16 when he gradually stopped attending school in S5. He’s cut himself off from all his friends and doesn’t leave his room. He’s recently just turned 17.

He says he’s wants to do things/go places but when the time comes he looks for excuses as to why he can’t do it. He was very sporty and a talented football player but has gradually found social situations, and eventually school too overwhelming and has given up sports and just lies in bed all day.
We have tried lots of different approaches but he’s frustrated with the fact he has nothing to do but when I organise things/support he just can’t do it. I’m not sure whether he understands his diagnosis and doesn’t want to talk about it as it spoils his mood. We ended up getting a private assessment as CAMHS was going to take so long although the downside is there has been no follow up or support.
It’s so hard watching him struggle as he’s desperate to make contact with his friends but his confidence is so low. His personal hygiene is going downhill and he’s spending all his time watching anime videos.

Where do I start? Anyone got any words of wisdom. Thanks 😊

Mum369

I have similar challenges with my daughter , check for a PDA (pathological demand avoidance in ASD) profile there is so much help there, as communication options allow him to maintain his autonomy, may/may not be right but worth a try ,advocate for him and his needs until he is comfortable. I empathise as for a parent it’s constant ,looking for a solution to enable change and connection , the change is see the world how he need you to see it . Shower or bath is an option ,they can choose and maintain control. Demands and rewards didn’t work with my daughter. I hope this helps as each person is so unique .

Mum369

I would also call CAHMS again for support or advice , I hope things get better for you both.

mum07Skye

Thank you your situation sounds so similar as bribes and rewards have never worked. I have considered PDA more recently but he was been to CAMHS twice already and is now been referred again by High School although that took years of persuasion on my part. His previous CAMHS appointments there was no mention of Autism at all it’s been so frustrating as he’s managed to coast along as he’s had so many friends to support him. I think because he’s had friends and been popular at school it’s not until now it’s becoming more obvious. Have you found any good resources on PDA? Thanks 😊

Rachel_Scope

Hi @mum07Skye.

It sounds like a difficult situation for everyone involved. Maybe the idea of going out and doing something is appealing but when it actually comes time to do it, he gets too anxious about it?

Here's some information about PDA from the National Autistic Society https://www.autism.org.uk/advice-and-guidance/topics/behaviour/demand-avoidance#:~:text=It%20has%20been%20characterised%20as,contested%20within%20the%20autism%20community. I hope it helps 😊

Mum369

http://www.sallycatpda.co.uk/ this may help too. Hope it helps.

mum07Skye

Yes that’s it exactly. He makes plans but cannot follow them through. He appears and he is capable but the anxiety takes over.
He hasn’t got an adhd diagnosis yet but unsure if adhd medication would help with the anxiety or not?
He is still young so try not to put a lot of pressure on him but he’s struggling without any routine now he’s left school.

Mum369

during teenage years underpinning issues can be clearly seen due to (hormones) arrival, just continue to support him as you are, there are lots of different topics that can cause withdrawal, so explore with CAHMS they gave me lots of paperwork that’s how I found what resonated, felt like I found the pin in a haystack blindfolded! I was looking for a solution rather than adapting to her needs Initially, it’s a long journey and each child is unique , I hope you find a happy place for you both to enjoy.

Mum369

PDA society.org.uk is also a very helpful resource.