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Hi my name is Trish and I'm mum to Sam (age 20) who is autistic but also has OCD. He washes all the time for no reason and his skin is hanging off, red raw and sore.

I've spoken to the dr multiple times and they refer us to counselling etc but we get no further. They either say no because of his age, that he's already diagnosed or that he doesn't talk. I'm not at my wits end.

We've got cream etc but try getting a lad with sensory issues to put it on!

Can anyone help point

me in some direction to get some support and help. I'm very out of my depth here and very frustrated.

Many thanks Trish 

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Hi Trish, Welcome to the forum:)

I really empathise with what your son's going through...my OCD was so severe at one time too that my hands were raw from all the washing. I was eventually able to access treatment, but by the sounds of it he seems to be being severely let down by the system.

I can't wrap my head around their logic that his being diagnosed (surely that's the first step towards, not the end of therapy) and unwillingness to talk, preclude him from receiving CBT (that's what they should be providing rather than counselling). Even if he does struggle opening up, it's down to the therapist to tailor the support in such a way to make him feel more comfortable talking through his problems.

You have a couple options open to you to get things moving in the right direction ...one might be to write to your MP to get them on board, but perhaps before going down that route it might be worth considering bypassing your GP, and for your son to self-refer via the Improving Access to Psychological Therapies service (IAPT).

We have a bit more info here going into more detail around what's involved:

https://www.ocduk.org/overcoming-ocd/accessing-ocd-treatment/accessing-ocd-treatment-through-the-nhs/england/

It might also be worth getting in touch with Ashley, the charity's CEO for his thoughts about this (Tel 01332 588112).

By luck when I was looking for something else I also came across this presentation that looks like it might be helpful too.

https://www.ocduk.org/parents/parents-conference-presentations/ocd-and-autism-northampton/

Coping with OCD isn't just hard for the sufferer themselves...it can take a huge toll on loved one's looking after them, are you also receiving any support? 

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Thank you so much, you've no idea what having another couple of options means. I really appreciate you taking time to welcome me and answer me too.

 

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Hi @Trish L just practically would he able to tolerate the cream if he covered his hands straight away with some gloves/socks/just wrapped them up before bed? Although that may be doubly too much. 

The lightest texture handcream I have found that helps a little is vaseline Advanced Repair Hand Cream. 

Could you apply it just to the backs of his hands for him? 

Some of the creams sting on broken skin, I can't remember if this one does. 

 

All that aside I hope he gets the help he needs soon. 

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I use a lot of Aqueous cream myself, that doesn't sting on broken skin but does need applying regularly throughout the day.  It did take some getting used to initially, physically touching the texture without gagging!

Out of interest, when you say your son doesn't talk - is it that he can't really talk in any setting as an autistic trait or more that he won't engage with therapists specifically?  I can't talk due to both mental & physical issues and have essentially been told that there's no help available as talking therapies require that two-way communication.  As you can see, I can type fine...but that's never been allowed as a comm's method so far which is frustrating.

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