Don't know where to turn

Could I have some advice please. My 11 year old son has PDA (suspected by paediatrician and us age 5, but not 'officially' assessed, that's about the best we could get). I'm starting to wonder whether he may also have some form of OCD, or whether it's a part of PDA.

He is very worried all the time that he can't control himself from doing things he shouldn't. When I say worried, I mean he gets really distressed and sometimes cries. He said today he thinks he will be dead or locked up when he's older because he can't stop himself doing bad things. He says 'I'm just so tempted'.

Some of the things include trying to ring 999 on his phone (because he knows it's an offence to ring the police for no reason), opening the car door when we're driving (we make sure we lock it as soon as we get in, but he says he has to try it at least twice to see if it will open). He recently got his own computer and we had to get a tech person to disable the reset button because he was upsetting himself that he would "need" to press it and it would mess his computer up.

He doesn't actively WANT to break his computer, or fall out the car when driving or ring 999 (in fact he told me to hide his phone, told me to lock the car doors, told me to get the reset button disabled). It's like he's compelled to do stuff he knows he shouldn't?

When he was younger, he used to say he couldn't help but bite down on his tongue, or poke his own eyes. He would be sobbing but still doing it at the same time, and we'd have to physically hold him to stop him hurting himself. Thank god he doesn't do that anymore.

It's like when they say 'don't press the big red button'. Well, he would worry himself sick that he needed to press that button and couldn't help himself.

It's not that he's being defiant. It's totally different. He genuinely hates the fact that he can't help it and gets really upset at himself, saying things like "it's my brain, I hate it, how do I stop thinking it, I can't deal with this".

I worry so much about how he will cope when he's older, whether he will be able to deal with the intrusive and compulsive thoughts, and if he gets so angry and upset at himself that he just can't deal with it anymore, what will he do? I know he's only 11 and I'm probably worrying MYSELF sick but what can I do? I've tried reassuring him over and over, tried to distract him (sometimes works), talked through it all with him countless times...

Can anyone relate? Any techniques you can recommend, or steps I could take (does the NHS or charities offer any sort of therapy for children like this?) I would really appreciate it. We've basically dealt with it all by ourselves because, other than referring us to parenting classes the paediatrician said there's nothing more they could offer. Thank you for any help xx

  • Hi. I've had OCD all my life and really struggle with intrusive thoughts. A lot of what you've described here does sound like OCD (it often occurs alongside autism).

    I went through cognitive behavioural therapy (CBT) and exposure response prevention therapy (ERPT) - they really helped. I don't know how you get in touch with CAMHS, but I think they'd be the right place to go to for support - it might be worth trying with both your GP and your son's school. OCD-UK should also be able to advise you on how to pursue therapy for your son. 

    OCD is one of the most treatable mental health conditions. It doesn't usually go away forever, but you can work on strategies to make life easier and manage the condition. I used to have a routine for everything (even breathing!) and was plagued by intrusive thoughts constantly, but I'm much more settled after the therapy.