Worried about OCD in DS. Anyone have experience?

[Ihaveneedofwaternear]

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?

Thanks for the experiences of older children. This is what I think might the case for my DS; he's "ok" now but I'm worried what sort of unhelpful thought patterns and behaviours are slowly becoming entrenched, and I think about the impact of hormones or more social/educational demands as he gets older.

It's useful to hear what people have experienced after referral. I think me and his dad are quite happy to read things and apply the techniques, but I feel like I just want someone who knows what they are doing to look at him and tell us what they think.

If anyone comes across this thread googling about their own child, I just wanted to update that I took all my concerns to the SENCo, who immediately referred him to the Primary Mental Health team; they triaged the referral and said it sounded exactly like OCD. He's on their waiting list. SENCo also referred to CAHMS, although we've all acknowledged it might not be accepted as he's functioning so well.

Thank you again to everyone that commented on this thread. It made me take some action after many months (years!) of feeling uncertain.

So glad they’ve taken you seriously. My ds is 14 and his childhood has been ruined by ocd because the services haven’t acted on concerns, and haven’t taken his autism and pda into account when it comes to solutions.