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Routines and Rituals - OCD?

Lg100

Hi,

I’m a struggling mum at my wits end hoping for some help or advice.

My 19 year old son was diagnosed with autism 18 months ago. He has always had difficulty socially: mis reading social cues, struggling to make friends, doesn’t do conversation, but managed to stay in mainstream education with minimal support until last year.

Just before his diagnosis, he began completing short rituals like tapping on objects before using them, wearing clothes for exactly 3 days, standing in a particular position for a certain amount of time. But he still went about his day to day business.

However, over this last year, the rituals and routines have become much worse (they increased in severity just before his end of year exams) and are now taking over his life. He has stopped going to a club he used to go to and two weeks ago packed in his college course.

A typical day for him is getting up late, spending 45 minutes in the bathroom (most of it stood in a particular position and completing handwashing - he has to wash his hands in a particular way and runs the tap for ages), breakfast (which takes him around 2 hours as he does lots of rituals before each mouthful) and has to hold his drink in a particular way and drain every last drop out of it, getting dressed takes an hour as he completes rituals while putting on his deodorant, clothes and while cleaning his teeth. He will then sit on the sofa with his head bowed staring, not doing anything. He has even stopped watching TV and doesn’t talk to us. 

It’s similar at lunch and dinner times - which take hours. If I try to clear away his plate before he’s completely finished, he becomes agitated.

Showering also takes him ages and he will stay up into the early hours (sometimes 4/5 am) to complete his routines. 

We struggle to get him out of the house - even for a short walk - as it interferes with his rituals.

I’ve pleaded with him to go to see the GP but at the moment, he’s refusing.

He has had a block of ‘Talking Therapy’ but he didn’t really engage.

I’m not sure if this behaviour is due to his autism or his mental health, or a bit of both.

Hoping someone who has been through something similar can help me understand this behaviour a little better or offer some help and support.

Thank you.

  • in reply to overwhelmed & underwhelmed ( O & U )
    overwhelmed & underwhelmed ( O & U ) said:
    and was forced to supress most of them for fear of punishment.   My behaviours were put down to being weird,

    My experience exactly. Same with stimming. My mom used to say that I was stimming while asleep, because I was suppressing it all day. Happy times!

  • Hello!

    I've read that Cognitive Behavioural Therapy works really well for people with OCD-like behaviours like these. There's a lot of evidence supporting this, but I haven't tried it so I'm just pointing out that a therapist who offers this kind of therapy may be able to help your son.

    Talking from my own experience, I can say that I've really struggled with this from the age of 6 (maybe) to the age of 22 (also maybe). Those were the worst years, because of all the masking I had to do at school. After this phase, I relaxed and stopped having the need to have this sense of control that these behaviours give you. Because I could have real control in my life. So again, a therapist could help with the anxiety that is one of the causes of these behaviours. 

    While I'm not trying offer medical advice, I think this might be something useful for you to read.

    https://www.med.upenn.edu/ctsa/forms_ocd_cbt.html

    I wish to you the best of luck with this! Remember, it gets better! Blush

  • Welcome to the forum.  

    On a personal level this sort of post makes me sad, because I had many rituals at at a far younger age - and was forced to supress most of them for fear of punishment.   My behaviours were put down to being weird, defiant, obstinate and all manner of other insults.

    Fortunately, most Autistic people don't have to go through such indignities, and I am pleased you've come here for opinion.  However, with your son being 19, any intervention has to be with his agreement.   

    As you point out, his problems may well be Autism related - or something else - but until he speaks with a professional, nobody can assist.  For me, much of it was either coping strategies to deal with other issues I was contending with, or repetitive stimming and masking.  But we are all different, as are the causes. 

    Other than offer anecdotal evidence, we can only signpost you (he) toward appropriate care on this forum - we aren't allowed to dispense medical opinion - and as you rightly suggest, this would normally be his GP who would then refer on should they consider it appropriate.  However, this needs his consent, and the other issue is that there isn't much support for post-diagnosis adults with ASD anyway - other than possibly volunteer or charity led organisations, and this varies from area to area. 

    I do wish you all well.