Advice please - undiagnosed adult relative being cared for by aged parents

I am new to this forum and just taking first steps to try to resolve a very long term issue in my family.

My aging parents have been caring for my older brother (now 51) for all of his adult life. He lives with them, is supported by then financially, practically and emotionally. He has always had difficulty holding down a job, he has no social relationships at all and suffers from impulsive and aggressive tendancies. However at the heart of it is a very kind hearted, unhappy and lonely person who aspires to being successful and leading a normal life. However often has very dilluded, unrealistic and obsessive ideas about life.

My parents have affectively being doing everything they can to protect him from the outside world for years but as they are now in their 80's and in ill health I am concsious this situation can not and won't continue for ever. My other sibling and I have tired for years to get everyone to bring their heads out of the sand and deal with the situation openly and practively but there is clearly a generation gap and a lot of pride and embarassment involved on their part. My elder brother I fear is part of the generation gap that missed childhood diagnosis and support for what is clearly an autism spectrum behavioural trait (I have friends who work in this field who have also identified this in him). However no one has ever had this discussion with him and Im not sure he would ever be receptive to any form of diagnosis. He does get very aggressive so we tend to all tread on egg shells around him.

A recent very aggressive (verbal and physical) incident with him towards me has forced me into trying to address this situation now. However I am fighting an uphill battle with parents that don't honestly want to deal with it (or don't have the energy or emotional strength). However I am sure there must be many adults living in a similar situation who maybe have never been diagnosed or have benefitted from diagnosis in later life. I am sure there must be support groups or practical help for those living in similar situations but I have absolutely no idea where to start. I just want him to be happy and secure in future life when my parents are no longer around and I want to prevent them for dealing with further stress now if we can use the next few years to support him to become self sufficient and have a wider support network of people he can relate to.

Any advice on where to go to get further support of tips and advice which may help either him, my parents or myself would be so very much appreciated.

With many thanks

okrad over 9 years ago

There is very little help for late DX HFA. I would let your parents shelter him and love him as long as possible. Reality will not help. Pulling "heads out of the sand" woll not help. When your parents die, things will get worse. the only way to have stopped it wold be Dx way early. Autism is like demntia. It never gets better. Lucky to remain stable.
Benjismum1 over 9 years ago

Squeezelt, you could be describing my situation (in fact I am wondering whether you are my sister) My brother is 51 and has been protected by my parents (mostly my mother) for years, my father is more realistic but my mum has always made excuses for my brothers problems/behavior.
A number of recent occurrences has led me to raise the issue again with my parents and they are more receptive now to trying to get a diagnosis - so at least when they are not around there is a reason for my brothers behaviour which I hope will, if necessary lead him to support rather than get in trouble.
In my research and speaking to various helplines the one thing that has come over clear is that my brother (and yours) will somehow have to be persuaded to take the first step and visit a GP for a referral. The way I am going to approach it is by making a huge list of the benefits of diagnosis (possible support/welfare benefits/understanding - by the authorities/wider community etc) and another list of the potential future problems without a diagnosis.
It will be an big uphill battle to get him to acknowledge that he even has any issues, never mind discuss them with someone, but I hope that eventually he will accept that it may be in his interest to get a diagnosis. I wish you well in your desire to assist your brother, and would be interested in knowing how you go on if poss? Xx
squeezelt over 9 years ago

Thank you ClaireHig and Starstruck for your comments/advice
Starstruck over 9 years ago

Hi sqeezelt,
Is your Bro questioning why he isn't working at 51 ?
Is he questioning his lack of Social relationships ? Does it bother him ?
Impulsive & aggressive behaviour doesn't automatically mean Autism.
What do you find about him that is deluded unrealistic & obsessive ?
I feel diagnosis of Autism is based on knowledge of the person from the parents & the person who may have the Autism.
Have you tried giving your Parents/Brother written information on Autism.
Asking if they think it's a possibility. That way it's a subtle suggestion. See what response you get.
There isn't too much help for high functioning Autistic Adults.
Plus being diagnosed has its issues. ( Can leave you a target for abuse).
If he has to rely on others to support him through life. That makes your parents his carer's.
The GP could refer him to a psychiatrist for a diagnosis. You would have to persuade your Brother to do this to access help.
You couldn't make him. He would have to want this for himself.
Diagnosis wouldn't take his issues away. It helps identify why you have some difficulty with what.
You can ask Social Services for a needs assessment for your Brother, because you suspect his autistic or may have a mental health issue ?.
This is causing stress to your ageing parents physical or mental health.
They have rights as carer's & can also request an assessment at the first time.
I hope you manage to persuade them to try to get some help.
Star
ClaireHig over 9 years ago

Hi
Sorry I don't have any experience of being taken care of. I was forced to conform through education & then work. It was always made clear that my mother would never help me. And when I failed at work, I even had to apply for benefits myself. I was not diagnosed until I was 31. Although there were clear signs my whole life. I even used a internet sperm donation company to have my child.
Has he been asked what he intends to do if they went into hospital & couldn't care for him? Or if the home had to be sold? If he understands what that means, how does he think he will live? Doesn't he care that he could be ruining their retirement & they only get money for themselves. Is he aware those of working age are expected to work unless they're severely disabled. If he won't recognise he has a disability, he's in for a big shock.
It may be that in his mind he feels they can hold on until he is of retirement age. Then he can just claim benefits & retire too. Though I don't know how people who have been out of the system are dealt with. If he hasn't been claiming benefits either, it could be hard to get a pension.
If he knows about benefits he may just feel it will all turn out OK. But is too ashamed to try to claim them yet. Even if he is putting off a diagnosis until he absolutely has to. Even when a referral is in place, it can take many months just to be referred to a psychologist. Then it could take several months/meetings to complete the assessment. And several months for the confirmation letter, even if it is autism.
During that time where would he live & what on. There's no help during the claim process. It's not the same as a refugee appeal, where they are housed & given an allowance. Instead it will be assumed that if you've managed until now, you can manage until the decision. Which won't be successful without evidence from professionals. A letter from family won't be enough. And even a diagnosis by itself is unlikely to cearly show that the person can't do any work.