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Problems And Decisions

FranstrahanFranstrahan Member Posts: 898 Pioneering
My second cousin sent me a long email yesterday. She has been absolutely great, and lent me hundreds of pounds, I've lost count how much, over the last year. But shes stopping doing it. It is a long email so wont give all details now but basically says if I cant live on UC go out and get a job that will suit your autism. Much easier said then done. She has also questioned my depression and anxiety recently saying the things you worry about wont happen so relax. A lot of negative stuff has happened these past 3 or 4 years which is probably why I have d and a now. So problems right there.
The decision is I am supposed to be moving to the other side of the country to be closer to family and the big city for services. I have 20 plus second cousins over there and only hear from one of them and not regularly and that contact looks shaky now. I dont think its good to stay where I am as isolated, no family, no friends, middle of nowhere, bad services in all areas from getting support down to transport, buses. But I could move over there and still never hear from them, and they seem to misunderstand me anyway. Do I stay here and hope something happens? Do I move over there? Or move somewhere else? My decision making had been awful so far in life, so I'm looking for advice.
Specially as relationship not good now with cousin after the email. Thanks.

Replies

  • poppy123456poppy123456 Community champion Posts: 20,100 Disability Gamechanger
    Hi,

    I'm sorry to hear this. This is indeed a big decision, as one of the reasons for wanting to move was to be near some family that you have contact with. As your cousin has now decided not to help you financially does it mean that they no longer want any contact with you at all? That's one thing maybe you should ask them.

    I know from other posts on the forum that you also have ASD, is that correct? Those that have this can often suffer from social anxiety because they just don't know how to interact with others. I know this because my youngest daughter also has both, as well as a learning disability.

    I'm sad to hear that your cousin is being this way towards you when it's not as easy as people think to "open the door" and face the world. My daughter is the same when with other people because she constantly thinks that people are "looking at her" because of the way she reacts... no eye contact, no interaction, starts to sweat, shake and constantly gets annoyed because she thinks people are looking, when they aren't.

    It's often very difficult for others to understand those that have ASD, i know it took me a long time to understand it and it wasn't until my eldest daughter started working as a support worker that she was able to sit me down and explain everything to me... then i understood. I can remember a few years ago my youngest daughter used to rock back on for and i used to tell her off for doing this BUT i now understand that it's part of |Autism so i just ignore it now. If she's in a situation that she's not happy with then the rocking just because worse. Thankfully my daughter has me and her sister to support her, otherwise i don't know what she would do.

    Only you can make this decision because moving to a totally different area can also be extremely stressful. It really depends what exactly you want from life and only you can decide this. Personally, knowing how Autism affects people, i wouldn't force anyone with this to do something they weren't happy with.

    I don't have any advice for you but wanted to say that what ever you decide, i wish you good luck and hope that it's the right decision for you.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Mmmm, difficult one Fran.

    Going back to your post about social prescribing...you say you don't want anything which involves people.

    I don't understand your illness, but do you think your second cousin has tried all she feels able to and cant help further?

    If you go to all the trouble of moving and are still feeling alone and isolated, what will have been the point?

    I asked in another post to you.....would a 1 to 1 situation help at all?
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @poppy123456
    I decided best not to contact her for a while as long email and thought she sounded basically fed up with me. Yes, I've ASD and again she doesnt seem to get it as has said 'other people on the spectrum have gone on to have successful careers and relationships, families, and friends'. As if to say what's your problem, just do it. So she doesnt understand. No I dont do social stuff at all well and still mask whenever I have to which is exhausting, trying to keep up something your not. Again, shes only met me twice and shes said you were fine then.
    I feel a bit in limbo at the mo and not sure whether to just sit tight or do something. I moved up here on a really bad decision, the worse in my life, I dont like it here. But dont want to rush into something again. Dont know the Preston area, never been there. But same when I came here. Big decision.
    Thanks Poppy, for your supportive email. You understand a bit about the problems with ASD first hand.
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @pollyanna1052
    I think second cousin is fed up with me by her email. I will let things cool for a while before contacting her. That's the worry now behind moving over there, would I hear from them any more, would they be around when I needed help. Think she seems to think I should stand on my own two feet and unfortunately I cant.
    Yes I put on the Social Prescribing post, I wish I was back in 1 to 1 counselling.
  • poppy123456poppy123456 Community champion Posts: 20,100 Disability Gamechanger
    You're welcome,

    I agree it's a difficult decision and as you've never been there before i would also say to be extra cautious with the decision you make, especially if you have no support from family once you've moved.

    I agree with @pollyanna1052 here that one 2 one support may help you because they will be able to concentrate on you, take you to let you do the things you want to do. My daughter has had this support for almost 2 years from a support worker and she's been amazing with her. It's difficult for me to take her out a lot of the time because i have a disability too and there's only so many things my body will allow me to do in a day. To receive this one 2 one support you will have to refer yourself for a needs assessment first and this can be done with your local council https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/ I did this with my daughter 2 years ago. She still doesn't go out alone and has never been able to do this and she's 19 now but in other ways, it's helped.

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    Great @poppy123456, thanks for that, I will do that. I can go out alone but I stay alone when out, dont go mixing with people. Worse is the supermarket, I hate going round there. Thanks for that link.
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hi Fran, have you ever had a social services care assessment? If not it might be just what you need.

    If you fit their criteria for help, you could get a certain amount of hours a week. You could get them to help you find a PA. You could go out with that person and feel part of the community. You don't have to go anywhere that is too much for you. It could be a life line for you.
    xxx
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @pollyanna1052
    Poppy just given me that link, I think, if you scroll up, I'm just about to check it out.
    I've no problem going out, if I go out alone and stay alone. Its mixing with people I cant do. I 'put on my best normal' but its exhausting keeping up something you're not.
    Hopefully then these care assessment people can help.
    Thanks Polls xx
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    Mmmm, difficult one Fran.

    Going back to your post about social prescribing...you say you don't want anything which involves people.

    I don't understand your illness, but do you think your second cousin has tried all she feels able to and cant help further?

    If you go to all the trouble of moving and are still feeling alone and isolated, what will have been the point?

    I asked in another post to you.....would a 1 to 1 situation help at all?
    Just going back on one bit here where you say I dont understand your illness. Thank you. I dont think the general public as a whole, or even some doctors (that dont specialize in it) understand it. No two people with autism present exactly the same. But like your fingerprints, all different. There are traits of autism that we all share to some degree or another. Which is why it's called a spectrum disorder. But we are all different, and that's where the problem arises. There is no typical autistic person. So before I was diagnosed I got called weird, not normal, alcoholic, lesbian etc. They cant make you out, so come up with their own ideas. 'Shy' was another one, one of the nicer ones. Now when I tell people I'm autistic I get, you're not autistic, I know people who are autistic and you're nothing like them! You really cant win Polly. But thanks for saying you dont understand it coz so many out there think they do.
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hi again.
    Yes, I have heard there is a wide autism spectrum.

    Similarly, my diagnosis of Spinal MS is unusual. There are thousands of people with MS and there are 4 distinct types...RR, SP, PP and benign. And within those general headings, you wont see 2 people with any type of MS having the same symptoms.

    I guess most illnesses are like that...just the same as there are billions of people in the world and we`re all different.
    But when it comes to treatment for any condition, sometimes they can only offer a `one size fits all` approach.
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @pollyanna1052
    That's interesting about MS too. How many people know that!  I once went to a church where a lady there allegedly had MS affecting her eyes. She never spoke about it, it was supposed to be a well kept secret. But whether that was correct or not I dont know.
    Thanks for the info, it's kind of humbling to find out these things.
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Vision problems in MS are quite common. Temporary blindness does happen.
    Thankfully my vision has never been affected. xx
  • SeanchaiSeanchai Member Posts: 306 Pioneering
    Hi Fran .....someorry to read about your problems . My grandson ( 16 later this month) has severe autism and he stayed with us at the weekend there just to give his mum ( our daughter) a break . He is heavy going at times , he does not talk or read or write ...but he is pretty good with numbers , he knows everyone by their date of birth ( he attends a special school each weekday morning and comes back in the afternoon ...special bus) I know how hard it can be having autism , especially if you look ok ( as does my grandson ...apart from being overweight ) .....but I know how hard it can be meeting other people . People tend to judge a book by its cover . I remember years ago , if we were out shopping ( before Connor came along) ...and some child would kick off in a supermarket and throw themselves on the ground ....I admit , I used to think .." he needs his bum skelped" ...then when Connor came along my outlook changed entirely.  He could not cope with crowds of people .
    He is still not keen on meeting new people , although he is not as bad as he once was . 
    Please think carefully about moving to a new area Fran ...you would need to go and meet new people and it would be like starting again. I think, you would need to make sure you have the backing of your family if moving to their area . If they are willing to help you settle then that would be grand . ...but I think you would need to know where you stand with them . If for any reason they are not prepared to help you settle ect ....then it would be a huge weight on your shoulders . 
    Of course there is nobody can make that decision for you ....its up to you Fran . I hope you make the right decision ( whatever that is) .
    Good luck Fran ...in whatever you decide to do👍
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @Seanchai
    One problem is I dont have any friends, family or support here. I live in a small village and all but one of the residents stay clear of me. I had a pretty sheltered life right up till I was 38 when my dad died leaving me basically alone in the world. My parents knew there was something up with me, just that autism was less well known then. So 20 years on, I'm in trouble. Mine is high functioning autism so I look, act and can appear 'normal' . Going out into the world every day is like an actor going on stage. I put on my best performance and it works, up to a point. People soon realize theres something not right but they make their own minds up as to what it is. Keeping up the masking (I also chameleonize) is exhausting, and as the saying goes You can only fool some of the people some of the time. So it's far from great here, but moving will not solve that problem and unfortunately family over there do not seem to understand (though they say they understand autism). Tough decision, I would need their full support over there. I'm thinking of writing them a letter as emails are so impersonal, pretty much saying as I've said here. 
    Since I found out I was ASD I'm not sure if its helped. I find going out has become harder, my confidence has gone, and while I never have socialized and still wouldn't, just the normal day to day stuff, like going to the supermarket has become hard to do. So actually moving though it sounds good in theory would probably be pretty traumatic at the mo.
    Thank you @Seanchai
  • SeanchaiSeanchai Member Posts: 306 Pioneering
    H Fran....I feel so sorry that you are on your own and nobody to help support you . I used to have a full social life and many " friends"....but once my illness struck I found that I had no friends ( apart from my family) and then I realised how hard it must be for disabled people to make friends . It's a lot harder for people with a hidden disability . 
    I have found (over a number of years ) that the more I stay in the house the harder it is to get out and about. My grandson does not like going to different places, he likes what he is used to and change is something he dislikes immensely.  Of course he cannot tell us in words but his actions are enough to tell us how much stress he is feeling.
    I feel so sorry that you are basically on your own . in the 70,and early 80,s we had communities ...but Thatcher soon put a stop to that . People are more and more isolated today than ever before , it must be a lot harder with no friends or family round you.
    I also stay in a small village , we all used to " dig in" and help each other , everybody knew everybody else and people were only to willing to help each other . These days we do not even know the people who live in the same street us us. I noticed things changing when they quadrupled the size of our village by building hundreds of private houses on the outskirts of our village .Before the new houses were built I used to work away in the garden and some days I found that I got nothing done as people would stop for a chat . After the building of the new houses , nobody stopped for a chat apart from the usual old neighbours ( they of course , over the years) became fewer and fewer . We have a small shop across the road from me and I would say 'good morning' and smile at the strangers in the village ....alas ...people mostly looked at me as though I had horns growing out my head .I soon got the message that very few wanted to speak ....or even acknowledge my good morning 🙄
    It has got worse over the years I,m afraid . 
    I know exactly what you mean Fran as I have stayed in this small village all my life ( 65 years)although not so small these days.... I,m afraid there is no sense of " community"  in villages these days. It feels like " every man for himself" .
    I think you are doing the right thing and asking ( in writing) to your extended family , if they would invite you to the community and family .
    I hope whatever you choose to do is the correct decision for you . ...my prayers are with you .🙏
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @Seanchai
    I've been in this village 15 years. When I came it had 104 houses, really sprawling village, over a couple of miles or so. They have built maybe just 10 semis in that time. They wanted to build 80 but the water table is too high and they cant do it . So lucky on that score as there is not much here. A church, a pub, and a holiday camp. No shop. Most of the people that weren't born here moved up from down south as property here is cheap. The newer houses have working age folks in them but guessing they all travel into the towns and city miles away. But it's a very isolated little place with not a lot happening. You are right, not what you would call a friendly village. The people born here dont like the 'incomers', the folks from down south are living the country dream in their comfort zones, and the working people are out all hours with the travel time added on. So a funny little place now really . We are three miles from the nearest small town as the crow flies which is about five miles if you're not a crow, down winding country lanes. And nine of those crow miles from the nearest proper town. I can see the advantage of living nearer Preston, as you say, as long as I can be sure of family support.
  • SeanchaiSeanchai Member Posts: 306 Pioneering
    I hope things work out ok for you Fran ....tyere us no worse feeling ( I would not think) than being unwell and no family or friends around you . 
    You have obviously thought lond and hard about moving . I believe it must be a hard thing to do after 15 years on the same place ....but if family are going to help you settle near Preston then that would be good I think .  I hope you make the correct decision Fran ...good luck 👍
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    Thank you @Seanchai. It's a big decision and I'm weighing everything up.
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