Published on 12, July, 2020
Hi, I’m new here but feel like I don’t know where to go for support. Due to some admin mistakes we were able to take my 36 year old brother out of hospital 4.5 months ago. He was diagnosed with Aspergers at 18, and was sectioned at 22. He’s spent 6 years of adult life living in hospitals and about 7 years in supported accommodation until they break down and say they cannot meet his needs. With lots of freedom and encouragement while living at our house he’s been able to start courses, go to social groups, travel to different towns and meet up with friends etc. It’s been hard work as me and my partner work full time and he doesn’t like being in the house on his own but refuses to accept professional support. He also rejects his diagnosis or that medication does anything because he doesn’t want to believe it. He has had a few incidents of aggression when he’s felt that there have been demands on him like when he’s been asked to wash his clothes or to have a shower, but generally he has been happier. He manages his own medication but always says he doesn’t want to be taking it. Last week the consultant agreed to reducing haloperidol. He was up all night the first night and the second night continuously talked to himself till 1am. Then the third night he became agitated because he couldn’t find something and said he didn’t want to sleep. I asked if he wanted PRN to relax and he got angry and tried to take them all to prove they didn’t do anything. When I tried to stop him he smashed the back door window. We have repeatedly asked for some psychological support for him to help him deal with issues around demands, decision making, diagnosis, medication, confidence in who he is, managing stress and anxiety etc. He likes me to understand how he’s feeling but finds it hard if he doesn’t want to hear something, and I don’t know what the solutions are. Some issues are due to AS, and his rejection of the diagnosis, and some I think are due to living in secure environments for a long time where showing aggression was the only way he could feel in control. I don’t know if he will agree to increasing the haloperidol back again or how much difference this makes. The consultant just said they were would see us in 4 months. It feels like the support being offered to us isn’t what we need so we are being left with nothing. I really don’t want him to go back to hospital!
I think an autistic advocate might show him the positive side of his diagnosis. A really nice one is keiran rose I'm not sure if based remotely near you but he could point you in the right direction
https://www.theautisticadvocate.com/?m=1
Thanks so much for your reply- I will definitely look at the advocate route, I hadn’t thought of this as he’d only ever had one advocate in hospital who was pretty useless!
He equates the Aspergers diagnosis with negativity and having to accept something that he didn’t want to, and being compliant, so he has always tried to fight it. He used to be very quiet and shy as a child but now he is always very expressive about how he feels! (Which is good and bad!). He tend to end up in hospital when he’s had breakdowns that become unmanageable. He has no other diagnosis but he would feel fine saying he has mental health issues but not autism!
Hi,
Welcome to the forum I don't have anything in the sense of practical ideas but you mentioned that your brother won't accept help from professional services (completely understandable after being in hospital that long) have you looked into an autistic advocate? There are alot of services run buy autistic people that may be able to approach him differently to help.
I don't know what area you are in so could not say what's available but look up actually autistic advocates and you should find someone in your area or at least someone for some advice.
You could try to contact the helpline on this site they may be able to give more support.
If you don't mind me asking was he sectioned for a separate mental health problem or was it to do with his autism? As this might be a reason he won't accept the diagnosis he will possibly be linking his negative experience of hospital with being autistic, so if he denies the autism diagnosis then he is fine and won't have to go back.
I am probably way off on that last bit it was just a thought, I hope things improve, but seriously look into an advocate even if he won't engage they will be able to advise you.