I'm not sure whether or not to have a carer's assessment. My adult son's needs remain unchanged. He's extremely withdrawn, reverse sleeps, lives in one room, no friends, no connection with the outside world other than to do a little grocery shopping and will not engage with services. To be fair, it's gone really badly in the past. The "help" from mental health services was quite damaging and also, since we pushed for this "help" (cos all of the advice is, of course, to "seek help"), eroded any trust he had in us as parents. Moreover these services appeared to have no knowledge of autism - if they had, I'm sure my son would have been diagnosed and we'd have thought about our own neurodivergence and the implications at a much earlier stage. Plus the mental health assessment we endured was, quite frankly, frightening, with the threat of hospitalisation and very basic, one-size -fits all meds/therapy.
Against this background we are left on our own to cope with issues like managing benefits and finances generally, very poor hygiene (don't know how to get a very withdrawn adult to bathe or clean their teeth) and the impact on us psychologically. I am constantly anxious and worried but, in a similar pattern to my son, have given up on NHS services. They have little to no autism awareness and no non pathologising model of neurodivergence embedded in their approaches. I don't trust them.
At the same time, I feel desperate and need some support, advice and guidance. Would it be worth having a carer's assessment? What might be provided? Would I have to be very careful about what I said to services to avoid triggering another damaging mental health assessment for my son? Can I proceed without involving him at all, instead relying on paperwork from our past engagement with services?
Anyone out there who's experienced this and got anything helpful to their caring for a young adult in an extreme "hikikomori" state?
