Universal Credit


I am new to this forum and have been diagnosed with Aspergers. I work part time and have avoided claiming benefits previously as the whole system terrifies me, but I am struggling with my finances and I finally have my first appointment next Wednesday as I can't avoid it any more.

Is there anybody who can tell me what will happen and what it might be like? I know I have to bring ID with me. I am worried that my anxiety will completely overwhelm me and their expectations of my ability to work will be too high. I currently work 20 hours a week and find it very overwhelming. I am not looking to work more hours than that, perhaps just slightly better pay in a job I can cope with but I have read that many of the people there don't really understand Asperger's so I'm scared they might tell me to find any full time job.

I am getting more and more anxious the closer it gets and considering cancelling my application. I know that would cause problems, but it honestly feels so much less stressful. Any information from anybody who has been through this process would be really appreciated.

Thank you.


  • There web site can be lot more unreliable that autism.org.uk . So printed them out as an PDF.  That way I could prove to them that I did it.

  • I find if I’m 100% clear and certain about what I want, I always get it, even when it seems impossible. When I first went to see my gp (who I have never seen before), to get a sick note, he was initially very reluctant to give me what I wanted. He said you could be anyone, just walking in here off the streets, why should I believe you. I simply said, I AM just anybody who just walked in here off the streets and why wouldn’t you believe me? I got what I wanted and more, by the time we finished that session, which went on for almost half an hour - could have been more  (I was dying after that long, in a room, with a doctor but I got what I wanted). However, it sounds like you got exactly what you wanted as well, it just came in a different package. That’s the thing about life, if you know what you want, you will get it, you can’t not, but it might come looking a bit different from how you first imagined it might look. Well done you. You will always get what ever you decide you want, always. For example, you have decided you will get nothing more, ever, from the job centre, so you won’t, you’ll be right. If you we think we can or can’t, either way we’ll be right. 

  • Ok California, here’s the deal ~ what do you need more than anything right now to ensure you are in the best of health? By good health, I mean the whole thing, mind, body and soul. If you give your body what it needs, it will reward you with good health and well being. If you are happy today, you will be happy tomorrow, this is how it works. If you are miserable today, you will be miserable tomorrow. 

    I understand your concerns about work and sickness records but if you don’t give yourself what you need now, you may well end up so burnt out that you may never work again. We’re not talking about being out of work forever. And if you were resting/regathering your strength, health, mind etc for longer than your current employer is happy with, and you find yourself looking for another job, trust me, you do not want to be working for an employer that has an absolute zero tolerance for sick leave and if any potential employer felt like you had sullied your work record by you taking care of your health and well being, then you don’t want to be working for them. Looking after yourself can only ever be a positive and if an employer is unable to see that, then it doesn’t sound like they will be very pleasant to work for. I’m not suggesting you make a habit of going on the sick, but that is not what you’re considering here. You’re considering how best you can look after yourself and if a current or future employer can’t appreciate that, then they are potentially passing up somebody who could be the best employer they’ve ever had. And as for the DWP, they can’t push you to do anything. At worst, they can stop giving you money but they certainly can’t push you into anything, not ever. 

    I don’t know what your situation is California, you might be like the millions of other people on this planet who gets something out of complaining. The last job I did, working for Social Services in 2015, I found that the people I was working with, the other social workers, managers, office staff and other staff would complain about anything and everything every single day we were at work and they no doubt continued when they went home. I introduced them to the ‘Complaint Free World’ challenge, I bought the books and rubber wrist bands and supported them through the challenge. I even contacted the Director of Social Services regarding the challenge and we were going to role it out across the service as the teams were so infected with the habit of complaining that it was almost impossible (for me) to work with them and they were far from doing the best they could in their jobs. I couldn’t work there if I didn’t do something to stop them complaining and being miserable, which is perfectly ok if that’s their thing but I wasn’t going to allow that kind of thing around me, it drove me crazy. So you might be like one of the many millions of people, or however many people there are in this country, who seem to follow the national pastime of complaining, when really, you don’t have anything to complain about. For example, do you really need some rest or are you simply using that as an object of complaint? I don’t know why people love to complain, clearly they get some benefit from it otherwise they wouldn’t do it so maybe that’s you and none of this conversation is relevant. But if you really do need a rest then take it. Don’t harm your body that way by pushing it and pushing it to the limit. If you need rest and you keep on pushing yourself then it’s not the DWP that I would be worried about, it’s you, you’re pushing yourself way harder than the DWP ever could.

    And don’t worry about the future, we don’t know what’s going to happen in the future and you especially don’t know what’s going to happen after a rest. Throughout the last few months of my burnout, I’ve been planning to get a little puppy and a cat, I’ve even picked out their names, I’ve been watching dog training videos etc. However, yesterday, because I’m feeling rested and much better,  I pushed myself to go out to this little trace your family history group I started at the end of last year and EVERYTHING has changed again. Meaning I’m not getting a dog or a cat anymore because after playing my satsang music (prayers of devotion to the gods) yesterday, full blast in my car, I’ve decided I’m going to jump on a plane and go to India, Bali, Thailand, Cambodia, Vietnam, Burma, Nepal, Oman, Jordan, Yemen, Ethiopia and more. You never know what’s going to happen from one day to the next but when you have good health, meaning the whole thing, not just a body that’s in great shape, but a sound mind and a good heart, your  thinking changes. I wasn’t thinking about travelling when I was in burnout, getting rest, but now, I can’t wait to pack my bag and go. 

    Only you really know how you are just now but if you need rest, don’t put off until tomorrow what you can do today, go and get it. The future will take care of itself, it always does. 

  • I mentioned just recently I wasn't able to get esa and pip because lack of evidence and no support worker who has knowledge of my condition and how it affects me in daily life. I also contacted the CAB, they suggest a list of agencies I can access, this one being the only one that can provide support which i'm only comfortable with written communication, others being inaccessible due to location.

    Even if I were eligible for pip, there are very few criteria that I would fit into, most points being in the physical that I won't meet, and the social part where i'm fully able to wash myself, cook, interact on a basic level and don't need supervision with medication. Only part would be social communication when it comes to working in groups, interpersonal skills and many soft skills I lack.

  • I actually asked my GP for a fit note the first time round when applying for PIP and ESA, i could clearly see autism on the diagnosis list but he just said that he didn't know me throughout my life and couldn't get hold of anyone who diagnosed me initially to get an idea of how I dealt with day-to-day life. I never had a support worker at home, and my parents didn't understand what autism meant and how it affected me during childhood and teenage years. I used to have an IEP but that was lost alongside the diagnosis papers which I guess they don't keep after a certain amount of time. So any evidence I could have presented to the GP were gone, and no one but my misunderstanding family knows the struggle I go through most days if I had to go to work. Couldn't get a fit-note and it was a no-brainer that I would fail both assessments. But managed to get 3 months sick leave so I had that time away from the jobcentre and I suppose that was the only thing i'll ever get.

  • I do not have much doubt that the GP would give me a sick note as I have complained about all these things for several years.

    I have noticed that employers ask for references to the previous employers. Then my records will show sickness. Is not that going to a huge problem to find another job later?

    At the same time I do not want to be out of work and any prospects forever.

    I am worried that the DWP may eventually push me into even much worse job where I will be struggling even more.

  • Yes, I do feel very fortunate California, I spend most of my time at home alone but it’s exactly what I need, it’s been over a year and I’m only just starting to feel a bit better. But if you go to your gp and tell them how you’re feeling they’ll give you a sick note which will give you some time off work and you might not need as long as me but if you do and the time goes on they might put you on benefits for a while as well, but don’t  wait until it gets any worse, please go and see your gp because they might be able to arrange some help as well. The job centre organised my support worker for me through social services and she’s been a big help. When we get so exhausted we need the rest. Please go and see your gp. I feel for you. I’m exhausted most of the time and I barely leave my house but it has done me the world of good. 

  • Thanks, I’ll have a look. I’m not sure what they’re doing ~ the work coach explained it to my support worker for me. Basically I said I don’t want to keep going into the job centre anymore, I don’t have to look for work but on universal credit (which is what I’m on now) you still have to go in every so often, which I don’t want to do anymore, it’s not helping me so they said they will put me into a group where I don’t have to look for work, I don’t have to get sick notes and I don’t have to go into the job centre and when I’m ready to work, I can just stop the benefit altogether as I’ll have my own money.

    I wish so much that I would in situation like that. I would be able to be alone and enjoy peace.

    I am so desperately tired to be forced to be around and meet people.

  • Would you be able to let me know why you email PDF print outs to yourself?

  • I always find going to the JobCentre Plus extremely stressful. I become very anxious there.

    It is hard for me to stay polite there as they keep pushing people to something all the same.

    It definitely is not doing me any good going in there.

  • I had a look and yes, I think that’s what they’re putting me on. My support worker knows all about it and said I don’t need to worry, so I’m not, I’m just looking forward to not going into the job centre even though I like my work coach and she’s helped me so far, I just don’t like going in there especially when it doesn’t a tily help me. 

  • Thanks, I’ll have a look. I’m not sure what they’re doing ~ the work coach explained it to my support worker for me. Basically I said I don’t want to keep going into the job centre anymore, I don’t have to look for work but on universal credit (which is what I’m on now) you still have to go in every so often, which I don’t want to do anymore, it’s not helping me so they said they will put me into a group where I don’t have to look for work, I don’t have to get sick notes and I don’t have to go into the job centre and when I’m ready to work, I can just stop the benefit altogether as I’ll have my own money. 

  • Now it intresting there are going down the assessment for the support group. Now I might be wrong but are you in UC/ESA - Work Activities Group?
    Now if they change you from UC/ESA - Work Activities Group to Support Group. That support group it not really a support group.
    It they not expecting you to look for work or even work.
    Now you can look for work if want to and if you get work you have to tell them. But there be no requiement upon you to go down to the Job Center.

    I was going to say Google it but I found this website, sounds rather informed

  • Learn there game and play them at it.

    This what I used to do play there game. I would after get up and sorting my self out I would then do job search. If there was nothing there I would note in Universal Jobmatch that there was no suitable jobs to apply for.I would then make print out a PDF of that page and email it to myself.
    Then they couldn't say that haven't been looking for last 2 weeks.

  • If you play their game though the game will never change and those who can’t stand up for themselves will always be at risk. I just told them straight, at my first appointment with my work coach at the job centre, after they moved me to universal credit, that I absolutely was not going to be looking for work and that I refuse point blank to be made to do a job I don’t want to do just to satisfy some government tick box. The coach brought the manager of the job centre over to reassure me this would never happen. They’ve actually gone out of their way to help me and even when I didn’t turn up for one of the appointments they didn’t sanction me. They’ve been so helpful, even when I turn up late they will make sure they see me even if it’s only for a minute, to make sure I’m ok and to ask me if they can do anything for me. The arranged support for me via the local social services, which they didn’t have to do, they’ve been great with me because I was honest with them and didn’t play their game. I’m not against playing their game, sometimes you have to but ultimately, I’ve had far more help when I’ve been honest. I told them I’d rather crawl like a sewer rat on my hands and knees and eat food off the floor like a scavenging dog before I looked for a job or did a job that wasn’t suitable for me. It seemed to convey the message pretty clearly. I even told them the other day that weekly visits is not working for me anymore so now I just have short visits every three weeks or two weeks and they said they’d arrange for an assessment for the support group so I don’t have to go in at all because it’s not really doing me any good anymore going in there. I want to get on with my life and having to go in there so often is very distracting for me. So they’ve been really helpful to me, I just told them what it’s like for me. I do have a coach who has worked with autistic people so she has some awareness but I bet you could ask for someone like her as your coach if they give you someone who doesn’t even try to understand you. I would find that unacceptable and demand a different worker or that I am removed from an obligation to go in there at all. 

  • I have reached the conclusions.

    I must learn their game.

    Never forget they can be as late as they like to see you but if you are late by 1 minute they can be total %$$.

    This is unfair.

    They seam to think that they able to remove issue's of your Autism by using threats of sanctions.

    This is unacceptable. The problem is that I extremely fear threats and sanctions. I am so afraid of them.

  • Learn there game and play them at it.

    Never forget they can be as late as they like to see you but if you are late by 1 minute they can be total %$$.

    They seam to think that they able to remove issue's of your Autism by using threats of sanctions.

  • I find that most of the time it is impossible to be polite with the Department for Work and Pensions.

    They all the time keep pushing you over the edge.

    One has no choice but to be rude and say ''NO!''. This is very difficult for me.

    Have you had similar experience?

  • I would take a copy of you diagnosis with you. Also if does not explain all issue you have I would explain to them the other issue you have. Make shore they wright them down.

  • It sounds like your family are trying to encourage you to be more independent. There are of local council departments and agencies, such as Citizens Advice, who could help you. Many of these will communicate via email if you don't want to contact them f2f.

    To the OP I suggest seeking independent advice too as you may be entitled to more than you are able to discuss in your f2f appointment. For example, are you applying for PIP too? If you receive enhanced rate on top of your PIP payment you may be eligible for a higher rate of UC. My local council has an independent benefits advisor who often visits disability groups. It could be a good idea to see if your council has one too.