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Sister of an adult with undiagnosed ASD - feeling desperate

Trivandrum

Hi, my brother is in his fifties, not diagnosed but I have long been convinced that he has ASD and he suffers with severe depression and anxiety.  He receives substantial emotional and practical support from me and our mother (in her 80s and in poor health).  He has difficulty managing his anger, frequently shouting and swearing at me and my mother, and often has difficulty eating and is underweight.  He lives alone, having moved twice in the last couple of years (when things go wrong that he can't cope with, he feels his only option is to move) and he is again trying to sell the house he moved into just 5 months ago.  He receives ESA (Employment Support Allowance), and I managed to persuade him to see his GP for the first time last week on the basis that JobCentre Plus will need to see a GP note, and she was very patient and supportive (having been confidentially briefed by me in advance) and spent an hour and a half with him - but he is refusing to engage in anything she suggested (blood tests for nutrition related issues, a further visit to her, a referral to a mental health team professional).  He is due to attend an ATOS medical assessment review tomorrow, which I am due to attend with him, but he has rung my mother this evening shouting at her, saying that he will not attend - he is clearly feeling too distressed to attend.  This is one of those times when I'm feeling at my wits end.  We can't make him attend, but I'm so worried that they might cut his ESA benefit, particularly if he refuses to attend.  Does anyone else face similar challenges with an undiagnosed adult family member?  How do you cope?  Are there strategies that could help him?  He acknowledges how unwell he feels, but attributes it all to external circumstances (being bullied when he was a child, experiencing problems with young people living in his neighbourhood, not being able to sell or buy a house, etc) and feels that the solution is for me or my mother to "sue the government" - and that any medical support, counselling, mental health referral, etc would not help solve his problems.  Any thoughts, comments, etc would be very welcome.  Thank you for reading my post.

  • I am seeking advice on how to help my son who is in his thirties. he still lives with me and has very few friends although he has a full time job and a good degree which he studied for as a mature student. He has always found social situations difficult and can appear uninterested or rude to others but I know that he craves acceptance. He also has a history of anxiety and depression. About 18 months ago he told me that he thought he was autistic, I looked at various websites and quickly realised that he probably had aspergers. He discussed having a diagnosis with the GP but was told that although she agreed that he may well have aspergers it would be difficult to refer him on as he seemed to be coping. His younger brother is due to get married soon and invited my son to his stag weekend (4 days in a group of 10). At first he looked forward to it but then started to get increasingly anxious and has put on lots of weight. He did not admit that it was the stag weekend that worried him until I asked him. Younger brother is not entirely sympathetic, I have spoken to him about giving his brother space to do his own thing if necessary and I think he will try but my son is talking about not going. There are lots of other issues but this is the most pressing. Any thoughts?

  • When you have appointment call to ask for it recorded and they will delay months

  • Thank you for the further suggestions.  I would love him to access support such as Direct Payments or get access to a social worker or pshychiatric nurse.  The difficulty at the moment is that he's never received any diagnosis (beyond GP diagnosis of his depression and anxiety) and never discussed the possibility of anything like ASD.  He did discuss aspects of his depression, including eating problems, with his GP last week, but is refusing to take up the offer of any further support or visit to a mental health professional, as he feels his problems are external ones that could be solved by "suing the government", and he wants me and my mother to do this.  Anyway, I've explained to  ATOS why he can't attend today and they've explained the process and evidence I need to send them, so I just hope now that he'll feel able to go with me to it once it's rearranged.  All this while taking the day off work, not for our planned visit to ATOS, but to look after my sick mother!  Aargh!

  • In my case both "shelter" and "citizens advice" were helpful.

    Idon't know what area you live in but it sounds like your brother would be eligible for Direct Payments to support independent living, though savings are considered in financial assessment

    .I'm sorry that anyone finds themselves in this position-it sounds like you also want gp to ask for emergency referal to an autism social worker and psychiatric nurse/key worker. Your brother should be entitled to professional support. Your brother is very lucky to have family support and the thought of those without support and in a similar situation unable to access help is terrifying. 

    Night night

  • Thank you, I will see if the GP can write a letter in the morning, that's a great idea.  Whether my brother will accept a home visit is another matter - although I feel the GP is very much on his side, he doesn't want to see her again, because he didn't like the fact that she was trying to help him to improve how he's feeling rather than providing an answer to the external factors that he feels are the cause of his problems.  Off to bed now so that I can get up early enough to organise what I can, thanks again!

  • Depending on time of appointment is it possible to get GP to write a letter in morning or home visit?

    The problem you have currently is that ATOS and dwp are neanderthal in their behaviour towards Autism. The NAS helpline will direct you to Citizens Advice or point you to fact sheets.

    While officially ATOS only allow pre arranged recording and it will delay appointment months. 

    Covert recording isn't expressly insubmissable in tribunal or court and at this late hour, best I can come up is download free audio recording app and put phone in flight mode during interview and record it.

  • Thank you so much for replying to my post, and with so much understanding of our situation.  Assuming he still refuses and feels unable to go tomorrow to his assessment, I will ring them to explain why he's too unwell.  I also have copies of the GP note from last week which may be of some help, and the GP certainly got a clear idea of how unwell he was, which would be useful if the JobCentre were to contact the GP.  I will keep working to try and change his attitude - which will be hard, he is very stubborn!  I'm really pleased you've mentioned getting a carer's assessment.  My mum and I don't live in the same area as my brother, and I've recently had a carer's assessment where I live in relation to mum, but I'm not sure if I can get one in relation to him, though I will try to find out - as you say, it puts him on the radar.  Thank you so much for your kind words.

  • The NAS are a waste of time-an appeal gp supporting letter and citizens advice benefits advisor assistance is a far better pratical solution.

    Even after tribunal you can still appeal tribunal decision with judge.

    If your brother's  behaviour is such that he poses a risk to himself or others then MHA would be something even at this late hour could be done tonight. 

    Having your brother sectioned may not seem ideal but it appears that as you say he is disturbed and under weight that it should be considered. 

  • Thank you so much for replying to my post.  I agree with your comments about DWP and I really feel for you too, it sounds like you're having a real struggle with them.  I realise it's late to be posting this in relation tomorrow, although if I can get them to rearrange as he's too unwell to attend, I will ask for a recorded meeting - I have seen a model letter that I could send to request this.  Whilst my brother gets very angry, he's never done anything to physically harm himself or others, so I agree with you that social workers would be unlikely to act on any contact at this point.  Thanks again for your thoughts.

  • As you will soon find the WCA is specifically designed to deny people their lawful benefit and while people blame ATOS-ultimately dwp and ian duncan smith are behind it.

    I know first hand the dwp's efforts to make me homeless and NAS silence is deafening. 

    Unfortunately with the appointment tomorrow there is little time to plan tactics, asking for a recorded assessment would have delayed atos months and is your right. 

    Both advocacy services and citizens advice are overloaded with the fall out of a system even parliment voted defective. 

    At this late stage if you feel your relative is at risk you want to get in touch with duty social worker on call and discuss a Mental Health Assessment. 

    But be aware unless threatening his own safety or that of others they are not liable to act

    Have a look at my self employed thread as it may be a possible alternative if ESA barred as appeals take months.

    If you look at my profile your see the callous behaviour of dwp when someone is verifiably ill and housebound at time of assessment.

    You will see that NAS stand by and that when things go wrong there is no safety net. Thankfully your brother has family looking out for him.

    Several of us have understanding of what can and does happen and can suggest what does and doesn't work.  

  • Hi - what an incredibly difficult situation for all of you.  You must be terribly anxious about him all the time + especially now.

     I think the ATOS assessment is the most immediate worry.  You could contact them + explain your brother isn't well or something.  I know it's just putting things off but he cd be in danger of losing his benefit.  As he did get to the GPs, even though he turned down further help, the GP will have something in his notes which should help with ATOS.  

    I'd also ring the nas helpline or email them for advice about your whole situation with your brother.  As he refuses to co-operate in a number of areas, it makes everything an uphill struggle, as you know only too well.   He must be very unhappy, trying to cope with things in his own way.  I think the only thing you can do (you may have already done this a number of times, so apologies in advance) is to keep trying to get him to alter his attitude.  He has mental + physical health problems for a start, which need addressing.  On one hand he seems reliant on you + mum in certain areas + then disregards you on the other hand.  You or your mum could have a word with the GP to discuss applying for a Carer's assessment.  This would put you on social services radar.  There may be posts on here which would apply to your situation + also info via the home pg could possibly be helpful.  I hope you get through to him as it's not a good situation for any of you.