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Support for attending UC appointments?

Hello_world

Hello, I’m new here and usually don’t post online but have been looking around for some information and was hoping someone might have experience and can offer some advice.

I was diagnosed with ASD in Feb last year while I was on maternity leave. I was also made redundant while on maternity leave so have been claiming UC. Overall it’s been a positive experience for me since diagnosis because I’ve felt I can finally make necessary adjustments in life and for the first time I’m not doing anything full time (work or education) and realising how much of a difference this makes for my well-being. 

Initially I was not expected to do any work search related activities because I was caring full time for my child. But I have recently started attending appointments in preparation for transitioning to work search (as I understand it). I had one appointment end of Nov and there I just had to tell them a bit about my long term plans etc and that I was expecting to have more time once my child starts nursery in Jan. The person I met told me I wasn’t expected to do anything at this point. 

I just had another appointment today which did not go well. It was the same person as last time but she started asking me what I had done since last time in terms of preparing for work, and kept pressing that I was running out of time and would be expected to do full time work search very soon. I got very stressed and had a negative reaction to her questioning. I tried to explain that I was having difficulties with the information she was requesting because it was completely different from what she said last time. I also mentioned my autism at 3 separate occasions but she just looked at me like I had 3 heads. 

I came out of the appointment all shaken and could barely speak. I had a big cry when I got home. It all left me feeling like there were misunderstandings that could have been avoided, and the appointment did not have to feel so difficult if the person had taken my condition into account.


I have logged my condition with UC and while doing so said it’s something that does affect my ability to work etc. Does that automatically make a difference or do I need to separately request further assessment for it to matter at these appointments?

I feel I could really need someone to come with me to appointments like that, to help with communication but also to kind of witness what they say in one appointment compared to the next (they apparently don’t make notes) but I don’t actually have anyone that I can take with me. I don’t have family and only have 2 friends that are also ND.

So I guess my question is if anyone knows if there is any support I could get with this that isn’t from a friend or family member? 

Parents

  • Hi Hello-world,

    Thank you for posting and telling the community what you are going through. The NAS website has a directory and you might be able to find some help near you. You can insert your town or postcode in the search box. Here is the link: https://www.autism.org.uk/autism-services-directory

    All the best,

    Karin Mod

  • in reply to Karin Mod

    Hi Karin, thank you for replying. I’ve had a look at the directory already and there wasn’t anything in my area unfortunately.

  • in reply to Hello_world
    Hello_world said:
    I’ve had a look at the directory already and there wasn’t anything in my area

    What is your town or county and we can possibly come up with some suggestions for you?

    in the meantime, have you created an up to date CV? This will be one of the first things for any applications.

    Your experience with the lack of autism awareness is a common one I'm afraid. I always found it safer to assume that whoever I speak to will either know nothing or have a negative response so I take either a notepad or a recording device (your smart phone should do this is you use one) and record the UC session with their permission.

    Just tell them you have issues with recallection so this is to help you keep a list of tasks and info on hand to make the most of their time in the meeting.

    This little bit of ego stroking tends to get over their natural desire not to be recorded in case you choose to use it against them if they mess up, but be prepared that they have the right to refuse as I understand it.

    For someone to go with you I would also look at any local autism groups or charities who may be able to provide or recommend some support resources for you.

  • in reply to Hello_world

    Work coaches see so many people after a few weeks specific details are forgotten unless something really out there happens! So please don’t worry. I’m sure they’ll be delighted to hear you want to set up your business and you could ask about any support to do thst from them or local council. When you’re ready to set up ask to see a self employed work coach. They will keep you right with how to declare earnings, and what costs you can deduct and potentially still get UC. They may also be aware or run business enterprise sessions. There is lots of help available. 

  • in reply to Hello_world

    There is some local support in your area:

    https://www.southampton.gov.uk/adult-social-care/needs-abilities/local-autism-support/

    Hopefully something from their directory or helplines will be of use.

    Good luck

  • in reply to Iain

    Hi Iian, thank you. I am in the Hampshire area.

    My CV is up to date. However I am planning on setting up my own business (it’s pretty much ready to go just need the time available to actually do the work).

    I’m a little bit worried that after how the last appointment went it’s going to make it really awkward going forward :(

Reply
  • in reply to Iain

    Hi Iian, thank you. I am in the Hampshire area.

    My CV is up to date. However I am planning on setting up my own business (it’s pretty much ready to go just need the time available to actually do the work).

    I’m a little bit worried that after how the last appointment went it’s going to make it really awkward going forward :(

Children