How to approach severe OCD in probable ASD

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My daughter has severe compulsive / ritaulisted behaviour / OCD. On the spence anxiety test she scored in the 99 percentile for compulsive behaviour. She is a checker and most of the ritualised behaviour involves hand movements. Various scans, moving her hair, subtle movements on the table around her plate. She likely also has autism. I am waiting for a private assessment. The last time I asked a regular doctor for help I was asked "do you know there are kids with fetal alcohol syndrome, and psychosis?" So I take that to mean that we are pretty low on the pecking order and I am not keen to go back and ask them for anymore help as it will certainly not materialise.

So we're plodding along trying our best and it is probably atleast another 3 months before we get to assessment. In the meantime the ritualised behaviour is getting more and more pronounced.

Here are some facts from conversations with my daughter: It is much worse when she feels stressed. The movements make her feel safe. At school she mostly does it in the bathroom. She feels awkward doing it with people around.

Other autistic behaviour is also becoming more pronounced. I am not sure if she is becoming more comfortable being herself or whether this is somehow indicitaive of something getting worse? I don't know how to best approach it and whether to support this as a need and coping strategy or try to do something about the amount of "checking" she has to do.

That sounds like a difficult situation.

One piece of good news that I can give you is that ASD does not get worse with age. It can, however, appear to get worse because stress tends to draw out the signs and symptoms, which is consistent with what you described. However, when the stress becomes less, the visible severity will also become less.

Unless the repetitive hand movements and other repetitive behaviour (stimming) are damaging or self-injurious in some way (and it doesn't sound like they are), don't try to stop them. This is her way of dealing with the stress, so trying to stop it will only increase the stress.

I gather that the school isn't able to make any accommodations without having a formal assessment? Your daughter can't be the first student they've ever had with ASD/OCD.

Thanks for your reply.

The biggest problem I have in trying to get assessment and any professional help is that my daughter until recently has masked at school. The school have not previously taken me seriously. This has shifted slightly, more because of my inisitence rather than actual evidence, they are making small adjustments and have put one of my ideas of how to give her stress- reducing time at school into practise. In my opinion a lot of the stress comes from school and she finds it easier during holidays.

What accommodations would you ask for at this point?

There is a thread where I asked about rituals and routines in ASD: viewtopic.php?t=358545
Ritualistic behavior in ASD is not always OCD, even with very strict routines the underlying feelings and desires are just different than those of "typical" OCD.
What you describe seems to me to be just stimming. Restricting this to home and school toilet is the best she can do.
So maybe it is not OCD, nor anything worth getting rid of.

^^ Thanks for replies.

My husband has ritualistic behaviour and routines as described in the thread you link to. Putting his cereal bowl out, folding his socks in a very particular way etc. for him I think it is definitely just linked to processing - he finds calm in standing folding his socks and he functions better having everything set up and ready.

My daughter's behaviour is slightly different. she does not need a particular order in her room although she has a lot of rituals and worries about her possessions and whether they might break.

The behaviour that I am worried about is ritualised behaviour to keep herself safe. She does them to "check" it might be scanning the room with her hand to ensure she hasn't left anything, that she is safe, that there are no monsters. But saying that she can also do it when it abundantly clear she wouldn't have left anything. Like leaving the school playground for the day when she has her coat on and her bag on her back. When she is eating she does it a lot. They are not injurious in any way and the main motivation behind them is to keep herself safe.

I have only once suggested she try to work at doing less 'checks' her response then was: "if i didn't do them, my body would do them for me."

chronos, just found your previous thread myself, many thanks. will have a read.

viewtopic.php?f=35&t=149789

Chronos, hope you don't mind me copying the end bit of your previous post, which was very helpful, and asking you a question about it:

QUOTE: Watch your children closely for certain rituals and familiarize yourself with rituals common to OCD. A child who is interrupted during an OCD ritual, after becoming extremely upset, will usually quickly start over rather than pick up where they left off. However, if the child is removed from the area without being allowed to finish the ritual, it's usually quite easy to distract them because the need to perform the ritual often dissipates quickly.

Conversely, a child who has been interrupted in the middle of repetitive autistic play is more prone to tantrum about it for quite some time, and will carry their obsessions around with them. For example, the child is still on about their interests in the car 30 minutes later.[/quote]

So recently we were on a long trip. I prepared my daughter before each transition by telling her we would have to get off one mode of transport, that there would be limited time to do checks etc. and that we would have to be respectful to other people also getting off / on the mode of transport. She did well. Then there was the very last dis-embarkment, either I hadn't prepared her well enough or she was just absolutely shattered, or there was too much excited energy at finally arriving but she just couldn't do it. The bus needed to leave and she couldn't do her checks to her satisfaction resulting in me having to lift her off the bus kicking and screaming so the bus could go. She was then hell-bent on trying to return to the bus and complete the ritual. It was dark and I had to restrain her so she wouldn't run off into the busy roads. I managed to navigate her away from the bus to a quiet spot and there was a funny commercial about dental care showing in a window. After a period of time passed -15 min or so - she started personifying the little tooth in the commercial. She could then gradually let go of the obsessive routine leaving the bus (which she realised could not be achieved as the bus had left) and to compensate for the dissatisfaction of not being able to do the check the way she wanted on the bus by forming an attachment to the video. After further calming down and reassurance she could then transition away from the video by doing checks there. She named the tooth and spoke about it for days to come.

So with that as a typical example, I am not sure I would say she can easily let go of the ritual once she leaves the space? How do you feel it fits?