Advice about how to handle early ocd-type behaviours

[moosemama]

Ds1 has always had a tendency towards some ocd-ish behaviours. He has obsessions about poisons getting on his hands and in his mouth and goes through periods of obsessive handwashing.

So far we've handled it by not making a big deal about it and unobtrusively directing him to washing his hands at appropriate times rather than every few minutes. He tends to be worse when he's stressed and the handwashing reduces to acceptable levels when the stress passes, although the underlying fear of poisoning/contamination remains and he can relapse into it at the slightest thing. (Yesterday it was because the football bounced off an old tree stump that he's convinced has poisonous funghi growing on it - he wouldn't even kick the ball after that, ran indoors to wash his hands with antibacterial handwash and refused to come back outside.)

He also has obsessive bedtime and morning routines, although as long as he's not stressed, he can cope with small changes to certain parts these if necessary eg when we're on holidays.

During past couple of weeks, when it was hot, we had all the windows open at home - hence lots of banging doors if not shut properly with the handle. We live in a semi, so obviously the dcs have had lots of reminders to shut the doors and make sure they are properly latched so that the banging doesn't disturb our neighbours.

Ds1 absolutely failed to do this effectively the whole time the windows were open, seemingly without noticing and we tried not to make a big deal of it, just getting up and closing them again ourselves quietly.

However, now it's cooler and we don't have all the windows open widely he has started closing the door several times, then doing a certain numbers of twists of the handles and pushes 'to make sure it's shut properly'. He only does it on two particular doors, the living room and his bedroom (both of which are the worst for banging when the windows are open). So, in effect, he is actively rattling the door each time he closes it.

I have been ignoring him doing this, hoping that he will realise the doors aren't banging and will stop doing, but it's being over a week now and he seems to be doing it more, if anything.

Should I carry on ignoring it, or is there some other way I should be handling this? I'm worried about making it worse by doing or saying the wrong thing and from past experience I know this sort of behaviour tends to grow and get more ingrained and obsessive.

Any advice would be gratefully received.

[NoHaudinMaWheest]

Hi Moose I'm not sure that I'm the best person to advise on this since I didn't manage to stop DS's OCD becoming full blown and severe. However here goes. When I first realised that Ds was developing OCD type behaviour I also took the ignore it as far as possible route. This was OK for things that were one offs even if they stemmed from underlying worries (like the football hitting the tree in your example). For things that were happening frequently like handwashing it only seemed to let them develop until we were in the midst of behaviours which impacted seriously on his and our lives before we realised it. With hind -sight I wish we had asked for professional help sooner before the obsessions really took hold especially as (surprise, surprise) referral took ages and effective treatment even longer. However I don't know for certain that earlier referral would have made any difference. OCD is hard to treat especially in combination with ASD, so I would go for early referral although I expect that isn't what you want to hear.

[TheLightPassenger]

by way of background I had OCD from childhood, it was mild until my twenties (didn't realise it was OCD till then) then flared up badly, I got a diagnosis, and medication.

I agree with Haudin, not to ignore it, as well as nipping it in the bud, from my perspective as child suffering in ignorance, it is important for your DS to know that his mind is playing tricks on him (would it be a helpful analogy that it is like being allergic to his thoughts), and there is a reason. I just thought I worried (I had tendencies toward scrupolosity type OCD as well) so much about small things because I was a really bad person. I couldn't get the anxiety into perspective. There is some good self-help material out there, but whether it's suitable for a child I don't know. The Kings/Maudsley website has information geared towards children with OCD that you or he may find useful.

from my POV, the big risk of OCD going untreated is 1)the contamination fears can really f*ck with your life, as you get wound up about what other people might be touching ect eventually, and 2)that living with anxiety in the long-term can lead to depression due to the strain.

I appreciate that another medical type issue to chivy for support with is the last thing you need, but at the very least keep a careful eye indeed over the summer holidays.

[moosemama]

Thanks NoHaudin, I was worried about that. We've already tried for a CAMHS referral once via GP and turned down. Basically they sent us a leaflet about a local support group we already knew about, with a comp slip saying they don't 'do' ASD and ds's anxieties etc all arise from his AS.

You'd think I would know what to do and where to go for help, given that my Mum's a Clinical Psych, but as she is now semi-retired, she's out of the loop re who to go to and obviously far too close to offer advice (she's really close with ds1).

I'm worried that if I point it out to him he'll start to consciously be aware that he's doing it and that will just perpetuate the behaviour, but I don't have a clue if that is right or wrong.

I think I'll book another GP appointment when we get back off our holiday and see what they suggest. Although he could well have stopped doing it by the time we get back, as he is always so much more relaxed there than he is at home and the house is open plan (so no doors to open and close bar his bedroom and the bathroom).

[moosemama]

Thanks TLP, I will go and have a read of the Kings/Maudsley website and might see if there are any books on Amazon that I could read while away as well.

We do do proper explanations about how unlikely poisoning is and how he is safe and has nothing to worry about. We get frequent (as in pretty much daily) situations where he is absolutely convinced a splash of something toxic has 'fallen' in his mouth and he is in danger from it. It can be anything from something dropping out of a tree to the rust treatment dh was using on the van. In fact he was so freaked out by the rust treatment he wouldn't go outside the whole time the dh was doing the bodywork, even once the rust treatment part was finished.

His teacher said if he felt he'd been contaminated by something it would totally stop him being able to work in class and it could sometimes take the whole day to convince him he was safe.

He currently only washes his hands at fairly typical times, eg after he's been outside or petted the dog and before he has a meal, but if we aren't vigilant it will increase with his stress levels as the new school year approaches in September.

The odd thing is that he will quite happily eat his lunch on the beach in Ireland without washing his hands, even though he's been in the sea, built sandcastles, played ball with the dog and collected shells etc. I used to be very by this, but Mum explained that ocd behaviours can be very illogical. Eg, my stepgran has OCD and goes as far as to scald her hands with water from the kettle before preparing food, yet she doesn't scrub jacket potatoes before cooking them - which seems paradoxical to me.]

I feel like it's my fault, because he used to be a proper dirty little urchin, nose-picking, sneezing into his hand and wiping on the nearest available surface, wiping bogeys on the cupboard by his bed etc, so I used to tell him to wash his hands after any of those things because bogeys etc contain germs. Then when the school did the whole catch it and bin it campaign and installed hand gel dispensers in the dining hall during the swine-flu panic he got really worried about it all. A horrible science book about viruses etc he read at school didn't help either.

[TheLightPassenger]

yy to illogicality of OCD. often people with OCD almost pick areas they perceive as their responsibility to focus on, so will loosen up outside their home IYSWIM. Please don't blame yourself, you have done nothing wrong by suggesting a bit of basic hygiene to your DS.

Mentioning what you see isnt likely to have an adverse effect. It may v v slightly increase anxiety if he is stressed by the conversations, but I think having to try and explain what you are scared of can help you see the unreal ness and illogicness of it. One thing that really made sense to me with CBT, was to learn that I had to distrust the feeling of huge excessive anxiety - that I had to learn to disregard that voice, as it was misleading. Which is obviously counterintuitive!

[moosemama]

Thanks TLP.

I think he does seem to appreciate the conversations we have about things not being toxic etc. It takes quite a few repetitions to get through to him, but I think it helps.

Not sure how well CBT will work. The EP that worked with him for about six months last year initially planned to try some CBT for his anxiety, but after a couple of sessions decided that he isn't self-aware enough for it to be successful and I'm inclined to agree with her. That's when we started working hard on his emotional literacy, in the hope that he can reach a point where he is more aware of both the physical and emotional effects of his anxiety. Unfortunately, he hasn't made any real progress with this so far, which is why I kicked up such a stink about the proposed statement not specifying a suitably qualified person to support the emotional literacy sessions.

[TheLightPassenger]

the CBT for OCD tends to focus more on risks/reality and behaviour - it's not heavily focussed on emotion, so hopefully would be more concrete and suitable for your DS.

[moosemama]

That's interesting. I didn't realise that.

At the time they were considering it before he hadn't started with any ocd-type behaviours. He was suffering from severe anxiety resulting in migraine, reflux and gastro-problems. So I think the CBT was going to be about identifying triggers, learning the early warning signs and challenging the thought patterns.

[mariammariam]

[[https://www.rcpsych.ac.uk/mentalhealthinfo/problems/obsessivecompulsivedisorder/obsessivecomplusivedisorder.aspx Scroll
Down]] to "exposure and response prevention".

[mariammariam]

Canadian website for parents of dc with OCD.

[moosemama]

Thank you mariam. I have just had a quick scan of the first website and it looks interesting and informative. I will have a proper read of both in the morning. Am exhausted and off to bed now.

I did do a quick questionnaire I came across on a site linked to via the Maudsley (I think ). It would seem that ds doesn't actually have what would be termed OCD at the moment, because his obsessions aren't significantly impacting on his daily life. I think I knew that already though, but want to do something now to stop it ever reaching that point. I can see the potential for it to happen though, especially when his teacher talks about him being unable to work in class because she can't convince him he hasn't been poisoned.

I just remembered another thing he does. Which is to ask me if he has just eaten something like say a poisonous berry. He knows he hasn't, but he sees the bush and starts to worry and fret about the poisonous berries, then somehow starts stressing that he might have eaten one by accident. At present he is usually happy to accept me telling he hasn't and he is fine and that even if he did the worst case scenario might be a little bit of tummy ache, but it takes a while to convince him.

Don't even get me started on what happened when his cousin came in his GPs house with a foxglove flower on her finger!

[NoHaudinMaWheest]

Ds does struggle with CBT due to his AS but the team he saw at the Maudsley focussed on the behavioural bit to get his behaviours more manageable and decided he couldn't cope with the cognitive bit. Now that he is older the local psychololgist is having another go at the cognitive process because if the thoughts aren't tackled there is always the possiblity of the behaviours increasing again, as indeed they have. He had his first session today and managed half an hour which she and I were quite pleased about.

Don't let them fob you off with the obsessions being just part of the AS. DS always had what might be called obsessive routines but they were things he actually liked doing. He might get upset or even have a meltdown if we tried to stop or curtail them but they were wholly different from the anxiety he feels if he can do anything connected with his OCD obsessions. It is quite hard to explain but I think if you have a child with both you can tell the difference. I think the being upset by doing them or the thoughts is the key to the OCD type ones.

Ds started hand washing after a hygiene talk at school. I don't think you should blame yourself at all. It is as if the OCD is there waiting for the trigger to come along and if it hadn't been your hygiene messages it would have been something else.

From experience and professional advice I have had I don't think you should avoid tallking about it as it makes it seem worse (too scary to talk about etc) but pointing out illogicalities might make things worse so I avoid that. Ds is also very illogical. He has never minded good clean dirt and even managed to dissect a rat in biology albeit with four extra pair of gloves.

The Maudsley are national specialists in OCD in children and young people and have produced a work book based on the things they do in clinic. I will look up the details and post tomorrow.

Sorry you are having to deal with this too. You have enough on your plate as it is.

[Eliza22]

My son has OCD. Diagnosed aged 9.

He was referred to CAMHS when we could no longer deal with it/ignore it. He takes medication. I was very reluctant about this but caved in because he was ill. He's 11 now. He knows what he's doing....why he does it. They are. There's a lot of thought goes into these rituals.

Seek advice from your gp. The condition can escalate and be so very debilitating. My son lost an entire academic year and floored him and us.

It's not your fault. Not something you did/said. There is a genetic tendency, I'm told.

Sending a to you.

[MrsRobertDuvallHasRosacea]

Dd was diagnosed at 11 and it has been a rocky ride.
Our first brush with CAMHS was positive, but I think it was because she gelled with the therapist.
She then had private CBT and hypnotherapy, but was very against it so it didn't really help.
She worries about sickness, food contamination, my son being ill...makes life very difficult and we have given up on holidays.
However at nearly 16 she seems to be coping better.

Do go and pester gp.
Hope it works out..it is such a strain for all of you.

[moosemama]

Thank you for all your replies.

I haven't had time to do any more reading today, but have spoken to dh and we are going to book a GP appointment to discuss trying for a CAMHS referral again when we come back off holiday. I am concerned that with this being his last year in primary and the whole secondary transition thing - which he is already very anxious and distressed about - things might suddenly get a lot worse as the stress and anxiety increases next academic year, so it's best to try and do something about it sooner rather than later.

[NoHaudinMaWheest]

That certainly sounds like the best approach, Moose and there is no doubt that stress escalates OCD. From what you've posted it sounds as if it is already affecting DS's life and yours - OCD is really tough on the rest of the family too. As far as the questionnaires go I have found that it can be difficult to fit DS's symptoms into them (and he has done lots). However like ASD OCD is a spectrum and while there are common themes there is no such thing as typical OCD.

The book I mentioned is "Breaking Free from OCD - A CBT Guide for Young People and their Families" by Jo Derisley, Isobel Hayman , Sarah Robinson and Cynthia Turner. Isobel Hayman is the consultant psychiatrist at the Maudsley clinic and Cynthia Turner was psychologist there until very recently. It is aimed more at teenagers but will give an idea of the kind of approaches used. Jessica Kingsley stock it for £13.99.

Hope you have a good holiday. A different setting can help to break the stuck in doing certain rituals cycle.

[moosemama]

Thanks NoHaudin, I will definitely get hold of a copy of that book.

I was looking forward to the holiday until I started packing, now I just feel ill and exhausted. We're not going just yet, I thought I'd pace the packing over a few days, but after just one day of ironing and packing clothes I've had it.

[NoHaudinMaWheest]

Sorry to hear that Moose. Ironing and packing are exhausting. I hope you manage a decent rest and stress free time when you get there.

[Penneyanne]

Funny,Moose, ds is a bit like this and I am largely ignoring it at the moment and saying things like 'don't be silly,of course you dont need to count to four every time you want to do X ' and am hoping it will disappear..He does things like flick on and off light switches several times before he enters/leaves a room and worries a lot about germs etc also.
I also find being on holidays helps a lot as the change of scene seems to alleviate/help him disasociate from such usual concerns iyswim.Hope you have a nice holiday Moose.