Published on 12, July, 2020
My eldest (13) has always had a hard time getting to sleep, but these past few months have been on another level. He's a yo-yo kid, up and down the stairs night after night with random questions or to share ideas. It sometimes gets a bit much, but I don't mind it as long as it's a positive experience for him.
Unfortunately, the random questions stopped and an intense kind of fear took over. It started with him coming downstairs panicking over seemingly minor things that happened months ago looking for reassurance that he'd be okay, or because he thought he touched something that was at school.
Now he calls on me from his bed and if I don't respond, he starts screaming at the top of his lungs. He calls out for help at all hours of the night making out like there's an emergency, which I imagine is how it might feel in his mind, but to an observer the issues are mostly minor or nonsensical.
If I attend to him, he'll often start with one reason for needing my help, and then add more reasons as he discovers it wasn't a big enough reason to warrant shouting for help. For example, he'll shout for help and say his arm hurts, I'll go to see it and look it over and he'll mention something that happened months ago where someone tapped him in the arm and I'll explain that it looks okay and I don't think that that incident would have any relation to the pain he felt. At that point the pain might get better, but as I turn to leave the room he'll ask for help with something else, he might say he thinks he's peeing (he's never wet the bed) or that something is bleeding, these are actually used often and involve having to check, which I think might be an OCD compulsion.
The sudden change in his nighttime behaviour seems to be related to the recent onset of OCD which has progressed quite rapidly. It started with excessive hand washing after touching anything that has been at school and has progressed to screaming fits, avoidance and reassurance seeking.
He'll avoid areas of the floor he thinks he stepped on after coming home from school (before showering and changing) as those areas are "dirty". He's in an almost constant state of panic and will scream if he accidentally touches something he thinks might have been at school, or was in close proximity to something that was at school.
Today he came home panicking because someone breathed near him. He's still concerned that his face is dirty because of it despite showering after school and washing his face before bed.
No amount of reassurance or guidance seems to have any effect. He hears me, but the OCD is louder. Where he used to be an exceptionally logical thinker, his ability to use logic seems to be trapped in a dungeon of uncertainty and doubt.
I've been trying to communicate to him that it's not acceptable to scream at the top of your lungs in the middle of the night, but he tells me it's not him, that he can't control it, he sometimes even pretends it didn't happen, which he eventually admitted was made-up because he didn't want to get into trouble for screaming in the middle of the night.
While learning to accept uncertainty might be the key to fighting OCD, it's not quite so easy when you have ASD.
Can anyone offer some advice in helping my son manage his OCD so that he can take control of his life again, I'm afraid he's going to cut himself off from all the things he loves and I feel incredibly powerless to help him at the moment.
Thanks for your response Iain, I agree, I don't have the knowledge and experience to manage this effectively, which is why I'm here seeking guidance.
Unfortunately, he's in a waiting list and given our rural location it's unlikely that the professional will be an expert in both ASD and OCD, but we may get lucky. A CAHMS referral has also been submitted by his school, but they've advised that it may take years.
In the meantime, we'd like to help as best we can and ensure that as parents we don't become part of the problem or add to it in any way. It became clear that by reassuring him and attending to him we were enabling the OCD, but ignoring him and letting his anxiety rise only made things worse.
From what I understand, fighting OCD requires accepting uncertainty, but with ASD he seems to only think in absolutes. This presents a catch-22.
We've tried getting to the root of the issue, through discussions at times when he's relatively calm, but everytime we think we've figured it out, another layer appears.
It's become clear that this wasn't the result of a single incident, however, we've identified several minor incidents and misguided ideas that seem to have seeded this progression.
The school toilet appears to be at the centre of most issues. Here are some examples:
1. He saw the hand soap in a urinal one time. He now thinks that every hand soap has been in a urinal and refuses to use it, deciding instead to use sanitizer.
2. There was a group of boys acting suspicious in the toilet, he thinks they were doing something with drugs and thought that simply being in proximity to them meant that he could be affected by drugs. Since then he's refused to go to the toilet at school. Thankfully the school has allowed him to use the staff toilet, but the fears haven't stopped.
3. He's terrified of catching a disease by sitting on the toilet seat and will hold it in until he gets home.
He also has fears related to stepping on things or other pupils DNA getting on his belongings which he feels would give them ownership over any of his creative works. Hair is a major trigger at the moment. There seems to also be some worry regarding germs from sex after hearing a rumour about older pupils at school.
It's the combination of these things that he feels make anything that has been to school or come into contact with anything that has been at school dirty. If I were to hold his bag up and shake it, he'd scream that I'd made everything dirty and would feel that he needs to throw everything out.
In our discussions he's recognised how farfetched some of these ideas are, but says that it doesn't change how it feels. We've also discussed why he feels that things are still dirty after cleaning them, to which he responds that maybe they weren't washed properly or well enough. For every solution there's another "what if". Logic doesn't seem to be a useful tool here.
He lives in the moment, which makes incentives or consequences of little use. Teaching him how to self regulate better seems to be the obvious answer, but the fear and anxiety is overwhelming.
We've worked through some OCD self help books, but a lot of the solutions conflict with his neurodiverse mind.
We're looking for ways to help him self-regulate, reason with himself, and take control again.
I would say he needs to get a therapist who has experience in OCD and ideally autism - quickly.
You lack the knowledge and skills to be able to help him now and it would take some fairly skilled therapist to persuade him to work through the issues.
In the short term, perhaps try to get to the root of the issue. What was the trigger for all this - why does he think it dirty? Why does he think that even after washing it isn't enough. Getting him to rationalise and articulate it may get the logic to slowly start a defence in his mind while you find a therapist.
In the short term I suspect medication is the best way forward as he is in a vicious circle of lack of sleep building his paranoia.