Hi, Im new to this forum. I have an adult son who has Asperger Syndrome and other mental health issues who lives in supported accommodation but will not co-operate with his support team. He comes to me with all his problems, begging for help but refuses to let me help him. Everything I do or say is wrong and he is very emotionally abusive towards me. He hates his life and keeps threatening to kill himself. He tells his community team just what he wants them to hear and no more and yet bombards me with emails full of woe and abuse. His physical health is very bad but he won’t see a doctor, his flat is dirty but he won’t clean it or let me do it for him and all the while he is saying no one will help him.
I can understand his despair and there are people who are willing to help him but I am the one getting the brunt of all his frustrations, walking on eggshells and getting more stressed by the day.
Can anyone suggest any strategies I can use to help me cope?.
My son has learning diffiulties, he seems unable even to ask his staff to make him a jelly (packet in cupboard) but bombards me with things he wants to do. I don’t have the answer I’m afraid, but it’s exhausting.
Thanks for your reply. Yes it is exhausting plus your self esteem and confidence goes down the pan when you are constantly being abused and told that everything you do are is wrong.
Is he able to understand that he is grown up now, and has to take responsibility for his own things? My son has different issues. His home is incredibly tidy, far tidier than my place if I’m honest , but at 41 he can’t read, write, or do any maths. He was brain damaged at birth, and now two people in one. Part normal, part 3 year old. He has no idea at all about money, needs help with shopping, cooking etc. but can easily light up, look after, and drive a 10 ton steam roller!!
I have an ongoing battle with Social Services who seem to think everyone with LD behaves the same. They don’t see him as an individual at all.
Hi Eileen,
How frustrating.
Just a few suggestions;
does his support team have training in autism and how best to support someone with Aspergers? If they don’t or they only have very basic training - then this could greatly impact their effectiveness. If this is the case, they need training.
Perhaps forward some of his emails to his team, so they can see what is really going on in his head?
You could contact his GP on his behalf, the GP won’t be able to discuss his health with you, but can listen/read a letter re your your concerns.
As for his flat, it sounds like his support team need to tackle that - they shouldn’t have let it get into such a state in the first place. It might be that he needs it cleaning when he is not there and then systems in place to help him keep it clean. Tidiness is less of an issue, it might seem disorganised to an onlooker - but if someone else tidies it - he may get more stressed as he won’t be able to find things.
When he complains about things you could do what we sometimes do on the forum(!) and just summarise the issue, tell him he has two choices - life stays the same or he can make changes and tell him his options for change. You could write this down for him too. He might be more receptive if he feels less pressured and can come to terms with the advice in his own time.
Melly1
My son has Aspergers which is at the top of the autism spectrum and is very clever. He was originally wrongly diagnosed with schizophrenia after a psychotic episode because of stress from noisy neighbours and he ended up in hospital for 15 years until his release on a conditional discharge 21 months ago. He"s not able to cope with any kind of change and has acute sensory issues. He has a community team - care co-ordinator, social worker, psychologist and psychiatrist as well as support workers but they are all a waste of space with him having no visits from them since the lockdown, only phone calls which doesn’t let them see how he actually is.
No wonder he is struggling. How can they just ignore him. Time to get in touch with the CCCG and remind them of their duty of care?!
Eileen, I realise he is clever - but that doesn’t translate into having common sense. His AS means he has rigid thinking, poor executive function (organisational skills) and of course struggles with change etc. All of these plus his sensory issues will be contributing to his difficulties. His team certainly are failing him. I suggest contacting the adult safeguarding team and raising a safe-guarding concern. They are all getting paid to support him and are neglecting their duties.
Melly1
Hi Mel
Thanks for your response. I should imagine that his support team only have a basic knowledge of autism and there’s always different staff there. He has complex needs and needs continuity.
I sent copies of his abusive emails to his community team and I was admonished for mentioning certain words in my replies to him. He keeps threatening to kill himself and all I said was that if he was lying helpless on the floor, the authorities would have to break in - the support staff aren’t allowed to enter his flat without his permission even if they had a key, which they don’t.
Even if I were to contact his GP, my son he would not let him into his flat, let alone open the door. I keep being told by his team that no one can make him see the GP - it’s got to be his decision.
His support team have offered to help him clean etc, but he won’t let them into his flat, no one has been inside apart from me since lockdown in March. It is not untidy but the place is full of dust and skin - he suffers from psoriasis and it covered his entire body until recently. He has burnt out two vacuum cleaners so no proper cleaning has been done for months plus he has never cleaned the bathroom.
I constantly give him his options to resolve a problem but he just doesn’t want to know but would rather wallow in his misery. I think he likes playing the victim.
Much as I want to support and help him, I’m fighting a losing battle.
Thanks Melly1 and Bowling bun for your suggestions. I will seriously think about contacting the CCCG and/or adult safeguarding team. Even though my son refuses all help, I feel his team should be doing more otherwise he will back in hospital before too long.
Eileen, can I ask how he managed in hospital?
He was there such a long time, I’m wondering if he was used to others he knew well telling him what to do?
It sounds like he might have missed out on the gradually growing up process the average teenager goes through?
Did he have any specialist education in hospital?
In my area there are some schools that specialise in autism, I think the company may be called Cambian. I know they have a specialist “college” in Bournemouth. Would something like that be helpful?
Before lockdown, did he have any specialist day activities planned?
Hi Bowlingbun
My son was 24 In 2004 when he was admitted to hospital but he didn’t get the correct diagnosis of Asperger Syndrome until 2010 after a lot of effort on my part. It took him until December 2018 to get his release from hospital because he wouldn’t participate in the necessary therapies. Whilst in hospital, he had staff on hand all the while and he did make a few friends amongst the other patients. During the last year in hospital, he had unescorted town leave so he went out every day to buy food and snacks and wouldn’t eat on the ward or socialise in any events.
He went to a main stream school and though he had issues like OCD, his autism never really caused any problems until he left school. He had his own flat at the age of 19 and he went downhill from there.
He doesn’t think, and never has done, that he needs help with his autism. He believes that it is me that needs to change.
He was in hospital 14 years?
Melly1