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Advice

Ems

Hi. I’ve been diagnosed for a year now (I’m 22), which means up until a year ago I was very heavily masking and really struggling in life. Which also meant I have had a few part time jobs that have left me severely burnt out. I’m now receiving PIP and universal credit limited capability for work. 

I have started to accept myself as an autistic person, but I still admittedly feel a lot of embarrassment and shame about it especially with my family. Which I hate so much and am struggling with. Everytime I see family members they ask me if I have a job yet and I say no and make an excuse that I can’t find anything or that I’m doing a few cat sitting jobs (which I have done in the past). I know I’m not exactly lying but I know I’m not telling the truth. But I can’t deal with having to tell them I can’t work. They don’t even know about my diagnosis or my mental health struggles. 

I don’t know if it is shame or embarrassment I feel, or that I feel awkward talking about myself in any capacity. But I do know that I am worried about how they’ll react. And these worries were confirmed the other day. A family member asked me if I was on universal credit, when I said yes he asked how much I was getting. I did think this was a slightly inappropriate and personal question but I couldn’t see a way out of it so I told him the truth about how much benefits I receive monthly. He was shocked and said ‘you can get that much from sitting at home all day doing nothing’. This really upset me and isn’t true at all. I felt too awkward after that to tell him I receive more and don’t have to search for work because I’ve been assessed as unfit for work because I’m autistic.

I was wondering if anyone experienced anything similar? Or if anyone has any advice on how to tell family members about an autism diagnosis. Or even if anyone has any advice on how to talk about disability benefits with family memebers? 

  • in reply to Expecto_Patronum

    I’m sorry to hear that we seem to be in a similar struggle. My family are the same, they see it as something that can be overcome if I try hard enough or something I have to get on with, like you said. Which we know isn’t the case

  • I haven't told my family. I have told my employer which seems a bit backwards. But I just don't think my family would get it. If they haven't figured it out by this point in life then they're never going to. They seem my traits as something to overcome. I can work but I struggle with other things particularly socially and with change and they just don't get that. I am constantly getting told to just be adaptable or just not to worry about it. I don't want to tell them because if it goes badly, I can never undo it. I wouldn't want that because autism is a big part of my identity. But then it's weird that my own family don't know about such a big part of me and frustrating that I can't tell them something is difficult because of a literal disability. They put me off with some of their comments particularly regarding mental health. It can be very dismissive so I don't want to share struggles I have with them.

    I'm not sure how helpful that is to you as it's certainly not advice but yes I've experienced similar.