Getting a child to engage with help for repetitive behaviours

You’re most welcome! 

Thanks Intertrails - the tapping thing is quite a small part of it really. It was just an example (tapping on a door X number of time before going in, going in and then tapping on the other side X number of times as well). She has a lot of little rituals that she seems to be compelled to do, even when it's causing her distress. Notifications on her phone are a real issue at the moment, especially if her group chat with her friends is messaging while she's trying to clear them. It really matters to her, and if she's trying to get herself to bed for a certain time (because that's important to her too) and clearing her notifications is taking too long, she ends up massively overwhelmed and yelling, swearing, throwing her phone. Again, that's just an example. It's been developing for about a year and it's kind of taking over everything. In the morning to get ready for school everything has to be exactly right and happen at the right time, and it gets more and more complicated. It's exhausting for all of us, since it has to start at 5:55am.

Oh brilliant - thank you so much for the links. I just came straight to the forum without checking the resources on here (doh)

Oh gosh, that must be a huge relief to have found the root cause. There's a lot of anxiety in my family so I knew there was a good chance she'd be an anxious child, but it feels beyond what I can help with right now. The trouble is that it needs navigating so carefully by someone who really knows their stuff, and I don't feel like we're able to say or do the right thing to get her help. And yet we're responsible for getting her there, otherwise there's no help. We feel so stuck.

Hi, my son first started OCD ritual behaviours around 3 years old when starting nursery and going through autism assessments. It's definitely stress related, especially when they feel out of control. He's 19 now, but i'll tell you the full story as things aren't always what they seem and unfortunately everything is pushed towards it being psychological. His OCD was really bad around starting school aswell, a lot of things with switches, stairs and around queueing. They did get a lot better when settled though. Around starting high school facial tics started, these would worsen if mentioned. Also got really bad if he didn't get enough sleep. These came and went a few times. Just before he finished school he fainted at a hospital appointment due to his blood pressure dropping really fast so again he was referred to psychologist, who then witnessed it happen and said it was physiological. Had to push for further tests, had his heart checked, that was ok, then they did a tilt table test and he fainted almost immediately. Then diagnosed him with Dysautonomia which affects his blood pressure regulation. Everything has made perfect sense since that diagnosis. He's more in control because he knows what is going on in his body and he can also explain it to others. Apparently many with Dysautonomia present with high anxiety. I found psychologists generally say mothers knows them better so trust your instincts. They don't always have the answers.

Hi and welcome to the community.

I agree with Cinnabar_wing and Martin  regarding exploring OCD with CAMHS.

You might find these resources helpful:

NAS - Repeated movements and behaviour (stimming)

NAS - Obsessive compulsive disorder (OCD)

Is she experiencing some additional stress of any kind like any big changes (new class/new school/period for the first time/...)?

The higher the stess Level is for me the more I will compensate with repetitive behaviour. For me it always causes problems sooner or later, which I notice, so I try to get help on my own then.

When you describe this behaviour what is it that you mean when you say that you can’t get into a room because she is tapping the handle? (I’m imaging she’s standing on the other side of the door just tapping with her finger like a drumming sound- but maybe I’m getting the interpretation wrong as that wouldn’t keep you out of a room) 

I think I’m super lucky as a child I had fantastic parents who thought I was entertaining rather than a mental health problem…. The only problem I remember my mum reporting to me is that I used to scrape the soap all over the bathroom habitually - nobody reported me to mental health they just thought I was interesting. I did learn growing up not to do this any more but was supported  in a positive way that I felt confident to achieve my dreams in the future. It’s difficult because if you start labelling someone then they will likely fall into becoming a self fulfilling prophecy rather than a person who can achieve things despite being interesting… you can unfortunately create negative cycles. So I guess it depends how severe the behaviour is.

i would say be patient she sounds like you love her very much but have to stand idly waiting for her. I don’t know how to offer any way to change this behaviour …. Maybe It is something she will grow out of in the next year…. Maybe distract her by changing the routine over the way you all live and move out of rooms as a group with something new…. Give her a challenge and send her to bed / the kitchen etc without you and say can you get us this or that and then follow her up later on / 5 minutes later whilst giving her first the time for independence and time also maybe to see if she breaks the habit after a while 

sometimes I just wonder how different behaviour is at times with something like (tapping 3 times - not specific, it’s a general thought I’ve had about a few things)  to somebody who for example is chain smoking / or even regular smoking …. Most people would dismiss the chain smoking as average behaviour when actually there’s probably a lot of psychological problems attached to it - yet it’s a massively wide spread problem 

That is tough when you are getting aggression, it's very tiring.

My youngest (8), is I suspect Autistic like her brother and me, and she has been going into big meltdowns currently when she feels overwhelmed. It's harder with screens as she can't process the instruction to stop while watching.  So at a calm time, I explained that I sometimes will ask her to pause, and it is so I can speak to her without her missing something on the video/game. I don't know if that might help at all, but I thought of it when you said she got stressed and yelled when you asked a question while watching, and some elements of it might be more the autistic processing and overwhelm than OCD. 

If there isn't a set amount of youtube videos before the final one, you may have a chance to influence that with written rules and routines, which autistic people can find comforting. For example, if you put a note beside the device saying '3 videos then bed', she might adopt it into her personal ruleset without as much conflict? I have no idea if it'll work for you as all kids and their brains are different, and mine is much younger, but you can gently try things and see what works for you all while waiting for your CAMHS appointment?

Thanks Martin - yeah, as I mention in the other reply, we have spoken to CAMHS on the basis that it sounds like OCD. YouTube might be a good route actually. I’ll see if I can find anything that matches.

thanks 

Hi - thank you. Yeah I deliberately didn’t mention OCD because I wanted an objective opinion but this is how we broached it with CAMHS. People have suggested it could be stimming but I think it’s OCD to cope with anxiety. Thank you for your ideas about how to talk about it. I wish there was more official help for parents around this part.  She gets so defensive when I ask her anything about it. Earlier I was patiently waiting for her to go through her bedtime YouTube routine and I asked how many videos she needed to watch before she watched her regular final one, because we were both watching the time. She just yelled at me. If she even notices me watching her tapping I get shouted at to F off. It’s so hard. 

The behaviour you describe sounds more like OCD rituals than autistic repetitive behaviour. OCD and autism often co-occur, but, unlike autism OCD can be amenable to talking therapies.  The rituals are defensive in origin, apotropaic, but they can assume such magnitude that they seriously affect everyday life. It can be improved but in order to improve, you will need to get your daughter to see that the rituals are a problem and get her onside about getting therapeutic help.

Perhaps getting her to read, or look at YouTube podcasts, about other people who have had the same problem and have been successfully treated, might help.

Hi Raitch and welcome,
Did anyone discuss OCD too? I don't know much about it myself, but during researching autism I read about overlaps and it might perhaps be useful to look into it. 

When I was discussing going for appointments with CAMHS with my son, we tried to frame it that we want to see what we can do to help with things he finds tricky so he can feel good about himself.

You've probably tried this, but making sure she knows it's not about fixing her -she might feel defensive about it, as sometimes if a person feels they can't do their rituals something really bad will happen, but more getting some understanding so people don't get cross at her.

It might be less nerve-wracking seeing it as communication differences and how to get round that, rather than her feeling like she is the problem.

Professionals might be able to help, but the first step is getting to the conversation first.