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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.

Parents

  • 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 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. 

  • 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 Snow

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

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