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I need serious help

NAS76239

I really struggle with my autism symptoms, I can't cook or clean by myself, I struggle with sensory issues and have daily meltdowns. Because I am a woman I'm very good at masking although it's incredibly draining and I've just barely recovered from another two month long sickness period due to autism burnout. Work is very difficult but my only other choice is not being able to pay bills, which is no choice really. During my difficult period we went to the GP for help who could offer nothing, they referred us to CMHT who have now discharged us twice after acknowledging that yes I do need help with my autism but they have neither the knowledge nor funding to offer me any help. In 2019 I was awarded social care to help me around the house. After two and a half years of waiting for this and constant delays, they have finally come back and said actually they can't offer me anything in the evenings or weekends which is the only time I'm available due to work, but they can offer someone to come round one afternoon a week four four weeks (as opposed to the original year I was offered) to help me make posters as prompts, which on their own will do nothing for me. I feel like I'm out of options. My local autism specific centre, Autism Wessex, can offer me nothing as they have said they only offer basic guidance. I feel trapped, my work won't honour my reasonable adjustments no matter how many times I tell them and HR that I struggle badly with phones, I just get told 'well we all have to do things we don't want to do' and 'It's all part of the job.' Me and my carer are struggling under the amount of housework that is piling up, he's in desperate need of respite, I desperately want to get through the laundry, and to be quite honest this has all been really detrimental to my mental health. I was diagnosed at 15 and since then it's been ten years of yes, we know you'll struggle, but we can't do anything about it.

What do I do? Where do I go for help? How do I actually just live without this constant pain and stress and depression?

Any advice would be much appreciated.

  • in reply to Snow

    How would I hear on the phone with ear plugs in? 

  • in reply to M

    Have you tried ear plugs? They are subtle and work really well.

  • in reply to M

    Oh and I've still not solved the problem of feeling overheard. I want to be invisible so a busy office helps that sometimes, but then the noise cancels out that benefit. I'm waiting to try some noise cancelling headphones. 

  • in reply to M

    I also struggle with phone calls but it is a part of my job. My main difficulties are: 

    • I hate feeling like I can be overheard
    • I hate background noise when I'm on the phone
    • I have to rehearse the basics of what I want to say and write prompts for myself 

    My job has a lot of unpredictability so there isn't always an option to rehearse the answers, but I have learned to say "I do not know, can I get back to you on that point?" and I go away, find out the answer and call back. 

    Your phone demands at your work may be different, but if you sit down and think about exactly what it is that is causing the difficulties, there may be ways to work around them. 

  • Ask for a direct payment. You can then choose who you pay to meet your assessed needs. 

    Are you eligible for the LA to pay for your care or have they told you that you need to pay a contribution or the full amount? That makes a difference to whether a direct payment is worthwhile.

  • in reply to Loz

    By the end of the day I am so exhausted that I find it really difficult to do anything. I definitely am aware of the need to break it down in to smaller tasks, but I don't know how to even start. I mean, in my head there's a logical voice which knows exactly what to do, but I physically cannot make my body do it, and if I can actually manage to do it for some reason my body will often stop working midway through the task and I can't finish it, leaving even more work for my carer. If I do manage to get through the job there's still a hundred more things that need doing and I'm just not contributing as much as a partner should to the household! It's very frustrating.

  • I'm at work at the moment and ridiculously busy, but I'll try and get back later in the day, I'm sure others will also offer solutions. Can you tell me what it is about household chores that you struggle with? I used to have a lot of issues but I found that it was all about dealing with the little tasks rather than focusing on one big job. If you can give specifics, we can all tell you how we make these things work. It may help you to figure out a solution for yourself. Laundry for example. Is it the washing, the drying, the ironing? Is it getting it organised in order to do it? It's all simple in an NT's hands. They probably don't think about it. For us it takes more work and planning. If you can figure out what the challenges are specifically, you can either work around them or find a way do them differently. I can't even start on the work issues. I have so many of my own, I'd by typing for hours. Just know that they will only get good work out of you if they find ways to work with you. If they keep stressing you out, they are only going to make their own lives difficult in the long run. 

  • in reply to Caelus

    I know, I literally said the same thing to my carer about if I was deaf! But I've been telling them for over a year and it's been falling completely on deaf ears (pardon the pun ahaha)

  • ah your work place totally doesnt understand at all then.

    imagine saying to a deaf person that ant hear you "we all have things we dont want to do" lol not that they dont want to do it, theyd love to do it, but cant. your work place needs to be put in their place and corrected on that to open their eyes.