I’m in my late 50s, caring for my 26 year old. They have autism with a strong demand avoidant profile (pda not diagnosed in my county). They identify as non binary and trying to save for private top surgery. They also have severe OCD and have also experience episodes of dpdr plus long spells of deja vue, which come and go. They rarely bathe or clean their room. They rarely leave their room and are currently using a bin for toiletting because they are convinced there is a spider in the bathroom. I have searched and found nothing. At the moment almost every time we communicate they tell me they are ‘overwhelmed’. Unfortunately when like this they hardly eat or drink. The ‘professionals’ think they are ok because they are very good at masking. They mask to their online friend too. They refuse treatment or to discuss anything. They are very underweight. Nearly got sectioned last year but very good at talking themselves out of things like that. The problem is, in my opinion they are very vulnerable but in spite of numerous phone calls to social services and the mental health team i am ignored because they mask so well. I then get treated like some kind of idiot and have been told by their care co to ‘tone it down’ when i get upset. I struggle with my mental health badly, am awaiting an adhd assessment that will probably never happen. I’m on as much meds as my liver can stand but the stress of the situation cannot be medicated away. I feel so guilty but i dont want to be the primary carer anymore because im making no progress and i feel like i am the only one that knows what is really going on. Yet im treated like im mad! Any advice or ideas would be welcome. Im having a carers assessment tomorrow. Bold of them to assume i will jusf carry on. Its destroying me
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Hi @FrizzyLizzy, welcome to the forum. I would suggest speaking to your GP for some extra help for your self and your son. I know how they can mask there’s something wrong with them, I would phone social services and tell them that you are not well and the stress you are under and you think that you need a break and if they ignore you, call the police or the ambulance service and request a welfare check not just on your self but on your son and let them deal with it. You can call the carers helpline for further information and advice. Don’t hold anything back and tell them the truth and you tell them if no one believes you tell them to check your son room.
Best of luck