Published on 12, July, 2020
Hi all, my name is John, I am looking after my older brother Michael with help from my aunt and close family. I have been looking after him since 2013 when my father died. Michael is in his mid fifties and has only just been diagnosed with medium to severe autism. He is in a bad way mentally. He has also been diagnosed with schizoid personality disorder. He is a recluse and refuses interaction with other people. He also has no motivation to help himself or me. I pay all his bills, do all his shopping and maintain his environment. Michael blames my late mother and father for his, as he sees it bad living conditions. He is very hard to deal with. He suffers from OCD, hords rubbish, refuses to open the curtains or windows. Keeps food on the floor and will not use the refrigerator. Often eating 15 to 20 day old food that should have been refrigerated. He often refuses to open the door and gets aggressive if we try to help with cleaning ect. The mental health and council seem to think it's OK to visit once a week or fortnight for 5 minutes and then declare "he's alright". Michael is always saying he will comit suicide and shouldn't have been born. He rants and swears loudly, often we receive complaints from nieghbours. He suffers severe mood swings from calm to ranting and shouting. I am worried for his safety and have expressed my concern's but it all seems to fall of deaf ears. He is living under the borough of [removed by mod] council. We have been informed that this is the worst in the country with regards to mental health. I welcome any advice or comments that you may have.
I expect that the council doesn't see the need to put a roof over someone's head who already has a roof of his own to live under. He will be entitled to some benefits due to his disability but he does not perhaps have a need for housing? he may not appreciate having to live with other people and may be better suited to living in his own home with appropriate help. I'm not an expert on benefits but I expect that he would qualify for Personal Independence payment (PIP) see www.gov.uk/financial-help-disabled
You need to be clear about separating his health needs, his ability (or lack of) to live independently, and housing and financial needs. Each of these probably needs to be tackled separately.
i would like to say how much I agree with "recumbinantsocks" in the removal of the Local Authority name in Brotherjohn's plea for help. We all need to know how bad this Authority is. I am Brotherjohn's and Michaels Aunt and I know how hard John works on behalf of Michael, even though he has several children and a fulltime job himself. Brother John is hindered constantly by the Authorities. He recently applied for sheltered supported housing for Michael, only to find this application has been blocked "because Michael has assets" I have complained bitterly today, that surely Michael cannot be denied help and support because of an inherited asset. Despite applying for benefits to help Michael, he receives barely enough to live on and this would not cover things like Council tax, Water, Gas and electric. Brotherjohn has been coping with Michael emotionally and financially for almost three years since their Mother and Father died. He desperately needs help, but the local Authority are slow to respond and appear to be doing nothing constructive. We have only managed to get the attention of the Local Authority since Michael was diagnosed with Medium to Severe Autism in 2015. For the last two weeks a support worker has visited Michael for about half an hour each time, the first time I went along to support Michael, but the support worker didn't want me there and I left Michael alone. In doing this, we as a family have no idea what is being discussed or whether Michael is telling the truth. Michael has said to us he wants a flat of his own, but the support worker says Michael does not want to move? It's so difficult dealing with this Local Authority as they seem to be working for their own agenda not the person who is in need of support. Any advice would be much appreciated.
I was trying to ask whether he would passively accept help to improve his mental health or whether he would actively resist any attempt to interfere.
There are benefits that he is likely to be entitled to that would pay for extra assistance with day to day living. I also wonder whether he might be better off in a supported housing environment.
Diagnoses like schizoid personality disorder are sometimes a best attempt to describe his behaviour and thinking. There are a lot of people on this forum who have had various labels applied to them before a diagnosis of autism is made. It is possible to have multiple mental health diagnoses but it may be that his thinking and attitude couldimprove markedly if he was properly treated for his underlying autism.
I have reservations about the extreme caution used by the moderators in removing health authority names. If there is a problem in an area then I think that it should not be hidden. There is a danger that the problems at Southern Trust NHS Trust might be rumbling on in another area. Vulnerable people are the least able to defend themselves and obtain good services and this site might be one of the few places where people can see enough of a pattern to raise the alarm.
Thanks for your response. I will be discussing our next move with family regarding getting something more done. There seems to be a big difference in urgency perception of Michaels condition. This is partly Michael’s fault, as he gives off mixed emotions and often says what he thinks people want to hear. This may be, we think to avoid fuss or interaction.
Thanks for your post.
I found it interesting. I discussed it with my family and followed the link you gave and found a questionair that could be completed. With help from family, I filled in the questionair on my brothers behalf and the resulting score was 39. It states that someone from age 12 to 17 with a score of 45 would be considered to have PDA. It would seem that this test is for children so may not be applicable as Michael is 54 years old. Some of the traits it discribes sound exactly right and others not at all, but overall I suspect he may be affected in some way by this condition.
With regards to if Michael thinks he is alright, he sometimes will say he's OK. Other times he states he's trapped in someone else's life / world.
He seems to be happy to bump along in life resigned to the fact that what ever happens, will happen. The sort of things that go on are as follows. Michael lives alone. I ring and ask if he's OK and all is well. He says yes, all is good. I go to visit. I find a pipe is leaking and the kitchen is flooded. The fence has blown over.
He had a lightning strike that blew a hole in the roof and caused electrical items in the house to explode. He said nothing. The heating boiler failed for over 3 weeks in November, I only discovered this when I tried to wash my hands. He will wear inappropriate clothes, often he will wear a t shirt when it's freezing and stand shivering. I will say go and put a jumper on and he will say hes OK. On arriving at his home, when I notice something is wrong and discover theres a problem. He will say something like "I'm just one of those people who dosnt have heating" or " I'm one of those people who has no TV ".
The point is that even when he thinks he's OK he isn't. Or he wants to be on his own so badly that he will not want to request help? His problems are very complicated and hard to fathom.
Hi BrotherJohn,
Welcome to the Community! I've removed the name of the council in your post as we try to avoid naming specific services.
I'm sorry that you are finding things diffcult at the moment in terms of getting support for your brother. You may like to phone are helpline which can also be emailed in order to get some further advice. In terms of suicidal thoughts, don't hesitate to take your brother to A&E if he is at risk. It may be helpful to go to your brother's GP with him and discuss his support needs and the fact that he needs more support. If you need to speak to someone the Samaritans is available to contact 24/7.
Hope that this helps but if not please don't hesitate to contact us
Sofie Mod
Hi John and welcome!
Autism often leads to mental health issues - I would guess that most of us adults on the forum have arrived here through that route.
One of the behaviours associated with autism is obstinacy (rigidity of thought is the euphemism!) and this can arise through failure to engage successfully with the world. There is a condition called pathological demand avoidance http://www.autism.org.uk/about/what-is/pda.aspx do you think that that page describes his behaviour?
It can be very hard to impose treatment and help on people with autism so the first question is does he think that things are OK or does he think that he needs to learn to behave differently? Autism can't be cured but we can learn some ways of adapting to having it.