Worried about OCD in DS. Anyone have experience?

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I'm starting to get concerned that my DS (who's 7) might have OCD. It's hard to articulate as a lot of it seems to be in his head. For example, things have to be an odd number. The other day he wouldn't go to play outside because there would have been 4 people but then another person joined so he could go because it would be 5 people. He taps things all the time, he also has a lot of tics and movements. Some seem like a true tic, others more like compulsions. He'll ask me to move to he can look at something as part of a "tic" (it's often repeated eye movements at the minute). He gets very distressed if he can't carry these movements out.

These are just a couple of examples, but I've noticed it's all day, every day, e.g. tapping his fingers three times, stamping his feet three times over and over until it feels "right", eye movements all the time.

The main thing that's really concerning me is that it seems to be worsening and also he's been talking about The Boss in his head. He can't do things/has to do things because The Boss of his tics will get angry.

For some back story, he's always seemed anxious from being very young. Struggled with things like unfamiliar places, birthday parties, swimming pool, going on the train or bus. Very anxious about all sorts of things. Worried things would set on fire. Worried the ferry would sink. Worried the house would flood. Lots of questions about things looking for reassurance.

When he was 2, the SENDCO at his nursery told me she was sure he was autistic. He used to count constantly. Constantly. I made threads about it at the time because it was so endless and intrusive. He would line up/organise by colour/count toys, very late to imaginative play but he does do it. He was seen at 4 by the paediatrician, who said he was too young to tell and see how he was when he started school. He's managed well at school, but still on the SEND register, for what they have said it mainly emotional needs. I asked the GP about his tics as they were very frequent about 18 months ago but they weren't concerned.

I don't want to make a mountain out of a molehill, but some of the things he's starting to say are worrying me. Anyone got any experience or advice?

I'm amazed they said he was too young to tell if he was autistic with all you've written here! Make sure you keep a note of everything. ASD and OCD are commonly comorbid, but it must be absolutely awful for him living with this level of anxiety, poor thing.

This is impacting his life and I would make a fuss about it, they're often not interested in anything unless you do unfortunately. This is not normal at all and he deserves some support. Unfortunately the NHS is fairly useless especially with MH issues.

Thanks so much for your reply, @Sal820. I think that it sounds obvious that there's something going on when I only write the "problems" like this. But he grew out of a lot of the lining up/counting type behaviours (although he does still love numbers and will play with the calculator a lot!), he's adjusted well to school, he's a lot more flexible and confident as he gets older. Outwardly, you wouldn't ever know and school don't really see any of this. I worry that this think I'm That Parent who's making an issue of nothing.

Can you self refer for speech therapy? We found it invaluable with DS1. He was lining up light switches, had tics and a stammer. She was really helpful. He’s ND too, as it happens.
He no longer lines up the light switches/tics! He does like an orderly well structured life with low stress.

@PrizedPickledPopcorn Well, I am actually am a speech therapist! I don't think SLT would be useful for him anything for him, but thank you and I'm glad your son benefitted from some input.

Did he just grow out of the lining up/light switches, did you work on his anxiety, read any certain books or anything?

So what I didn’t know (which you will) was things like: what to look out for as needing more intervention (self consciousness); how to respond/handle it; how to work with him.

We did general work on stress management, modelled managing/accepting stressful situations ‘Oh dear, what a lot of traffic! Never mind, we’ll be a few minutes late but I’ll explain to Mrs Smith and that will be fine’.

I became much more alert to my own behaviours that were feeding his stress (getting anxious about being stuck in traffic and being late!).

The light switches took care of themselves!
He was very late with numbers and reading/writing. His maths was good, but not if it involved numbers. Once it got harder, he found it easier. It was the pesky adding and subtracting that was the problem. He needed to see the numbers written.
We kept plugging away using different approaches, and the cogs suddenly whirred. He was clearly bright but the basics were a terrible struggle. He’s a perfectly capable adult in a good job, which at 10 you’d have doubted was on the cards.

It’s a very long time ago now! He’s 30. Formally assessed with dyslexia and dyspraxia, almost certainly dyscalculic and autistic.

Sorry. What a long answer! It’s just taken me back to the days when he paced in circles while he spoke, to help the processing.

If he also has tics, have a look into Tourettic OCD. It’s less well know, even among professionals, but is a form of Tourettes.

Thank you, everyone who has commented. Just about to make dinner but it's really helpful to have things to consider and to Google later!

Please get him referred to a paediatrician for assessment.

I tried 18 months ago. The paediatrician told the GP it would be one for CAMHS, and the school would need to do the referral. I said the school aren't concerned, and the GP said nicely but realistically that CAMHS would accept the referral because he's functioning fine. Do you think I should try again?

You can self refer to CAMHS and insist the GP does their own referral too. The more ‘pressure’ the better. If you put all that info n the referral there’s no way they won’t accept it

Really? That's the opposite message to what I've been getting, from friends as well as from the GP. I mean, maybe I'm painting the wrong picture, because he's happy and active and fine a lot of the time. But all of the above is also true.

I've asked the SENDCO at his school if I can have a chat next week.

Maybe different areas work differently. I feel like sometimes they can’t be bothered (our school SENCO cannot be bothered) and would fob it off on someone else. He doesn’t even reply to my emails. And everything is so stretched on the nhs in this department they’re not going to ‘encourage’ you to pursue.
Thankfully our GP took it on and did a referral and then chased referral. I also did a referral and called up to chase it.

in my experience you can struggle on and things ebb and flow, and flare up. What you’ve outlined is not normal, and I’d be very concerned if my child was saying those things and doing those things. Even if it’s only sometimes. I would encourage you not to wait for a crisis.

Another option would be to go private and see a child psychologist. We were recommended to do that by a pediatrician (his impression of CAMHS and nhs was very poor). We haven’t yet pursued, as our referral to CAMHS and OT came through quickly, but I haven’t ruled it out.

DD3 really struggled in year 9. Anxiety, tics, OCD... She ended up completely out of school, sitting in her room in the middle of winter with the windows wide open because of germs.

CAMHS saw her in June 2024 and diagnosed OCD but said she'd have to be on all sorts of sequential waiting lists, going through all the therapies they knew and admitted she couldn't engage with, before finally being added to the psychiatry waiting list, before being put on a medication waiting list. Realistically, they thought, 3 years before she would get medication that they said she would definitely need.

She started a new school in September 2024 but couldn't cope. Couldn't go there and couldn't let staff in. They patiently stood at the bottom of the driveway, then worked their way gradually up the driveway.

We saw a private psychiatrist in February 2025, who confirmed the OCD and started Sertraline straight away. Then she had her NHS ASD assessment, which confirmed ASD and recommended an ADHD assessment. So we did Right to Choose for that. The Sertraline helped enough to allow her to let the school staff into the house, but not enough that she could leave the house.

The private psychiatrist did an ADHD assessment while the NHS waiting list continued. So she started ADHD meds, which allowed her to leave the house. Then she had the NHS ADHD assessment which confirmed the private psychiatrist's diagnosis.

It's been a bit of a nightmare to get her ADHD meds on the NHS because of the new guidance from NHS England. However, with a lot of nagging, I've managed to get CAMHS to validate the private diagnosis, accept her on to their caseload and get a shared care agreement with the GP.

She's finally at school full time.

I think I've needed to hear someone say "this isn't normal", to be honest. I keep thinking that it's just the way some kids are or he'll grow out of it. But I know deep down I'm worried. I just don't want to make him worse by shining a spotlight on it.

@Lougle thank you for sharing your story. I hope this doesn't sound horrible, but what you've described is the sort of thing I'm scared about. That one say he'll suddenly spiral. You sound like you've been an amazing advocate for your daughter and it's amazing that she's back at school full time.

I felt the same way. We struggled on and life felt so hard trying to manage all the behaviors, doubting ourselves etc. And then my DC had a crisis moment and things flared up big time. That was our wake up call. We went private for an asd assessment and it was SO helpful to have a professional say ‘here is what’s going on’…

Getting the right support in place will give your child the best chance to thrive and flourish and achieve their potential. I’ve already learnt a lot thanks to the input we’ve had, and I feel like I understand my child’s struggles a bit better.

Thank you @nee22, I'm glad things are feeling better for you now. I don't know why I feel so hesitant to push for some more input or help or support. Luckily we could afford private assessment if we need to, which I'm very grateful for

You need to get in early. The worst thing DD3's school did (although very well intentioned) was validating her worries. Kids in the classroom were gluing her worksheets into her books for her, so that she didn't have to touch them. Staff in the SEN block were spraying her worksheets with antibacterial spray. They were cleaning down her workstation for her, wiping door handles...

There will never be 'enough' to satisfy the fear that OCD brings. The OCD monster just feeds and grows.

OCD in children can be linked to strep throat infection,I think?

Thanks @AsideFromThis. I have heard about PANDAS but his tics started when he was 2, I'm pretty sure looking back, and the obsessions with letters and numbers were before that even. He hadn't been ill. But thank you, I know that can be a cause.

another thing I’ve heard people worry about is thinking the diagnosis will make things worse. We haven’t actually spoken to our DC yet about labels etc, I dont think it would be helpful, still very young. The reason we went down that route of getting a formal diagnosis was to ensure we got the right advice and used the right strategies. And so we could advocate for him in school being properly informed.
What previous poster below has said is so helpful too, school won’t always get it right!

I can highly recommend this book:

What To Do When Your Brain Gets Stuck

DD was very similar to your DS, although no lining things up. She now has separate diagnosis of autism, tourette's and ocd. I can completely understand what you mean by the subtle difference between tics and compulsions, that's exactly how I described it to the paediatrician. Also, when you say 'outwardly you wouldn't ever know', that is very true for DD. We see her tics and compulsions but most people don't, as they're usually small eye/head/neck/shoulder/hand movements that aren't noticeable unless you sit and watch her. Not many people sit and study a child unless they are their own child!

My DD found the book above so helpful to explain to her what was happening in her head, and to explain it to us.

I would speak to the senco at school and full express all the behaviours and patterns you’ve noticed at home. See if she can explicitly observe him for a good few lessons to see if she picks anything up. A lot of this will be in his head and not always obvious. Also put more pressure on GP to refer. I would write a list of all the specific behaviours, habits and patterns you’ve observed and take that to the GP so they can really understand how he is presenting at home. They could even send this along with a referral to CAMHS. Keep pushing.

CAMHS are under enormous strain so a referral might be hard to push through if there is no risk and no impact on his functioning. But keep going. Hopefully they can at least assess or direct you to a service that can.

Thank you @PragmaticIsh, I saw that book recommended on an old thread and ordered it, but I haven't read it yet. Will have a look this weekend and see if it gives us some approaches and language to talk about all this.

@scoobysnaxx I've been recording little videos for years, since the concerns were raised about ASD by the nursery. That's a good idea to make a list of the behaviours and examples, that was vaguely what I'd planned to do before I speak to the SENDCO next week.

I'm really grateful for these messages, I think I've felt very alone in this worry about him for a long time. It's helpful to see that other people would be concerned and taking this stuff seriously.

Your ds sounds similar to my youngest who is now 19. He didn't meet any thresholds as far as school were concerned because he was functioning mostly fine. School nurse was very helpful though and we did get a pediatrician referral through her. They were very honest and said that it wasn't impacting his life enough to take any further. So we just learnt how to manage it and minimise the impact. This was fine until 16 when he got progressively worse and by 18 he couldn't leave the house and was in crisis tbh. Another year with both private and nhs therapy and he's got a job and back to mostly functioning again. But it doesn't fundamentally change that he has neurological diversity and a tendency to ocd. I look back and wonder if I had pushed further for help when he was in primary school would things have been different? I suspect not? The good news is though at 19 he has far more self awareness of his condition and can recognise intrusive thoughts and compulsions for what they are.

I’ve recommended this book before on here. It’s a really useful book.

I used it with my DS when he was a similar age to your child.
He’s now 19 and still “bosses back” the thing in his head to stop having the compulsions. In fact he told me to do just that last weekend when we were having lunch in a pub and 2 of the books were upside down on the windowsill row of books and I wanted to put them right way up!

The book explains things at an age appropriate level that really helped my DS.

I also bought Freeing your child from obsessive compulsive disorder for me to read which was also really helpful. It explained things really well and gave ideas that helped us.

We initially went to the doctor who referred us to Camhs, and had an initial meeting but there was a long wait for actual help and was recommended these books by the Ed Psych. In the end, by the time we finally got an appointment to work with the Ed Psych, I felt that we’d managed to work through things and his life was so much happier (and ours!!) so we stopped the Camhs and left the appointment for someone who needed it more.

If it is OCD, it’s a life long thing, but my DS has learnt to live with it. He still does a few different things, but it doesn’t rule his life like it did when he was younger.

Good luck!