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NAS63503

Hello. I just recently joined here looking for some help/advice. I'm not really sure where to start so I thought I'd just write. I apologise if it's a little long. I'm a 53 year year old man who has a 60 year old brother who has suffered from autism/aspergers all his life. He lived with my Mum in the same house all his life (my dad died 30 years ago and my mum passed away last year). I've tried to help him live in the same house (it's what he wanted) so he currently lives there alone. I try to manage all aspects of his life in terms of money/bills/paperwork etc but I feel I am failing him with his mental/social side. I see him once a week and we go for lunch and he sees my family for a few hours. During the week, I have to work in London. He knows many people where he lives in Ilford but isn't very good at interacting (he's either lost his hearing aid and I have to get a new one or he doesn't wear it). He loves saying hello and seeing people but often wants to leave after a short while. 

All the local people we know have my number and call me. The biggest problem is alcohol. He's started drinking again (he didn't while my mum was there). I know he's been going in pubs and mixing that with his daily sedatives means he gets drunk quickly. Sometimes he does stupid things, most times he's just annoying. Sometimes, the anger comes out and he knocks on people's doors and asks why they have't spent time with him.

Every day I text him 20-30 times. He texts me as soon as he gets up. He rarely answers the phone as he says he can't hear except when he has the earphones in on the mobile. I've bought him phones, iPads and a computer but they are all a poor substitute for loneliness.

He joined the local walking club (Mon/Thurs) but I don't think he goes anymore. He used to go swimming and people ask why he doesn't go. Someone said today they asked him to go cycling with them and he said his usual answer 'I'll think about it' 

I don't want to move him if possible - he's been there 60 years, he knows the area and some people but he needs help. When I surf, I see some care workers who come round but they don't look right. They are more for people with physical disabilities. He has none.

If anyone has suggestions for people who can be-friend/help or other suggestions please let me know. I'm thinking of talking all his money away and giving hima . daily allowance but I wanted him to become independent. When he's not drinking and can hear, he's such a friendly person.

Thanks for any help. He's on ESA but the PIP turned him down. Apparently he's fine to them - incredible.

Regards

Andy

  • in reply to NAS63503

    No worries! Autistic children develop into Autistic adults, the help is always needed, it's just a case of finding it! Aside from calling the helpline, it may also be worth contacting your local Autism Services to see if there is any support that they can offer. I feel that someone professional needs to fully assess your brother and identify needs that are not being met and come up with a plan to meet those needs, it seems that you may also benefit from a carers assessment? Did you get any useful advice from the helpline?

  • in reply to Former Member

    Thanks for the note. To be honest, the PIP in secondary. His welfare and emotional state is much more important for me. I don't know if these are common traits but things like OCD play a big part in his life. To give some examples, his wardrobes are full of the same clothes - things like grey jumpers neatly stacked, often not worn. He cleans and washes obsessively. He throws everything away. I have asked for support both from the GP and the local council. Let's see what comes of that. With regard to the PIP, I do understand. I appealed only on 3 sections: communication, mixing with other people and making budgeting decisions. I clearly laid out for each why it  was poorly marked. For example, how can they expect him to make budgeting decisions when all he does is throw the bills in the bin every time they come through. He can't deal with the stress. The reconsideration was turned down with almost a one liner after I wrote an extensive appeal. 

    I do appreciate the note - sometimes just being able to tell others helps me too. Most people just don't understand. 60 years is a long time for him to suffer.

  • Former Member
    Former Member

    Struggling to maintain relationships is a classic autistic trait but its also something depressed individuals struggle with too, so it might be twice as hard for your brother at the minute. If he's been in the child role all his life and has suddenly been thrust into adulthood I'd imagine that's going to be a difficult transition for him. Esp as change in routine can be particularly distressing for some autistics. 

    PIP isn't based on whether society labels someone disabled, as unfortunatley, they do with autistics. It's about whether the challenges your brother faces in very specific areas of his life are deemed difficult enough that they will cause him additional costs, which the benefit is then designed to be used for. More info about this is on the link below. I have had the displeasure of working with a number of people who tried to fraudulently claim PIP as they felt that simply because they are disabled they should be entitled. As such, to prove my trustworthiness, when I've applied I've back up all the points I make with independent evidence, inc letters to GP from secondary care, highlighted GP notes etc. I have always been successful in my application. If you feel your brother is eligible for this benefit you may be able to apply for a reconsideration or put in a new application. CAB could provide more help or you may be lucky enough to have a benefits advisor employed by your local council.

    If you were my brother I'd prefer you to sit down with a list of what you think the issues are and then we'd go through them together working out possible solutions - I like to be in control. I'm not sure what you're brothers personality is like though.

    It sounds like you might need some emotional support with this too. Action for Aspergers is a specialist service supporting autistic people and their loved ones so it might help to have them to talk things through with.

    http://www.awp.nhs.uk/media/825665/guide-to-pip-20-april-2017.pdf

  • in reply to Kitsune

    Thanks Kitsun. I've struggled to find help. Lots of the websites and help is for children and parents of children with autism which is great but there does seem to be a lack of help when people have grown up and still suffer and the parents are no longer around to look after them on a daily basis.

  • This seems like a lot of responsibility for you to take for your brother when you also have a family of your own. Maybe phone the helpline on this website to see if they can offer any advice about any other support that your brother might potentially be entitled to?

    https://www.autism.org.uk/get-involved/about-us/contact-us.aspx