Long rant/advice needed on family support and money (trigger warning: mention of self harm)

Hi everyone. I haven't been very active in this community for the past few months. I suppose that I have been dealing with self-acceptance and have been occupied with some intense interests. For a while, I thought that I had been doing OK, but I think that may have been because I have been ignoring certain feelings and thoughts instead of dealing with them and thinking them through. For context, I am 22 and still live with my family and was diagnosed almost a year ago.  

As always, I am struggling with the fact that I am unable to work. I am so lucky to have been awarded PIP and the Universal Credit Limited Capability for work. Although they have been incredibly helpful for financing and not constantly worrying about money and how I am going to afford things. In a way, they have made me feel isolated and unable to explain their use to my family. I think that my family, in particular my mum, thinks that it is something to be ashamed of, or something that is only a temporary fix whilst I find a job.

She is constantly telling me that I just need to find something that suits me, or that I can't spend all my time inside and not get out and go to work. She constantly says that it does me 'no good' to never leave the house. When in reality it's not possible for me, and makes my life so much harder and makes me completely miserable and depressed and constantly having panic attacks and bad thoughts. My sensory issues and anxiety make it almost impossible for me to be in 'the world of work' and even just leaving the house, let alone everything else and all the steps that come with being in a workplace. 

It really upsets me everytime I order something, for enjoyment or for an interest, for example some watercolour paints, only for her to always say 'what have you ordered now?' in a tone of voice that I know means 'you don't have a job so why are you spending money and not paying me back (I owe her money for when I have struggled in the past)'. It makes me feel so stupid for spending money, especially when I am gradually paying her back. She often almost brags about how my brother (neurotypical and 18 years old) has already paid her back the money he owed, but he has a full-time job. Then goes on to nag me that I should get a job and asks how much I owe her. It makes me feel like I'm unable to spend my own money until I have paid her back, even when the things I am purchasing are disability aids or special interest-related. I know that I am lucky to have the money to spend, and that I was able to borrow money from her, but I'm 22 years old. It makes me feel so childish that she is trying to control me in that way and shame me. I am trying to pay her back, but I do sometimes struggle with impulse buying, and I am trying to save money so that I don't need to borrow from her again. 

I am constantly trying to explain to her that I can't work and that's why I have been awarded these disability benefits, but I feel that she is in denial that being autistic disables me. I have even offered to lend her some of my books on understanding autism so that she can better understand me, but she doesn't ever ask or want to read them. I have even told her what to look up online to understand if she doesn't want to read the books. I know that she hasn't done it because she hasn't spoken to me about it, or perhaps acted on what she could've learnt.

I'm so tired of being told that I just need to find the right job or get over myself. It really wears me down and makes me second-guess everything. I really do wish that I were able to earn my own money and have a job. I would especially love to work with animals, but at the moment, it just isn't possible for me. I know she thinks I am being lazy and can't be bothered to find a job, and am just relying on the benefits money. But in reality, it is saving me and making it possible for me to live, not just survive. I am just running out of ways to explain or get her to understand. I have tried to understand how she may be feeling, and that she, too, has to accept that her daughter is autistic and disabled.

But it is hard to empathise to an extent as she supports my younger sister, who is 15 and also struggles with anxiety, depression and self-harm, and constantly does things to help her and seems to understand. But she can't do the same for me, especially since she knows I also struggle with anxiety, depression, and self-harm. She is constantly sympathising, understanding, and caring for my sister, yet criticises and shames me for having similar issues. I know that autism is harder to understand and perhaps deal with, and something else for my mum to understand. But why won't she take the time to understand me? All I am asking for is understanding, nothing else. I just don't want to be constantly criticised and shamed. She tries to guilt me and make me feel bad because my 15-year-old sister gets paid to do some jobs from a family friend, and my 18-year-old brother has a job. So she can't understand why I don't. Despite the times I have explained why. 

This is mainly a rant, and I feel that I have been repetitive (that autistic need to overexplain), as I feel I do not have anyone else to talk to who may understand, but I would appreciate it if anyone has any advice on talking with my mum about autism. Or if anyone else is experiencing similar things, I would love to hear and support you, even if I do not have any advice myself. 

Parents
  • Hey there Ems,

    First off, no you haven’t been repetitive so don’t worry about that. Also can I say that your writing is really clear and easy to follow?

    Secondly, I can sympathize, but unfortunately cannot empathize with your situation regarding your mother. I have some issues with mine, but they’re completely different than what you’re experiencing. So I might not be the best resource for advice on how to approach that. I do wish you the best with that situation, though.

    Thirdly, I’m an employment specialist in USA that helps people with disabilities find jobs. You said that you would be interested in working with animals, and I think it’s possible you could make that happen over time. It would take easing into it, though. I’m not talking a full-on dive into veterinarian work, I’m talking a tiny dip of a pinky toe into the world of pet care. I had a pet shelter that allowed one of my clients to volunteer there a few hours per week to get used to cleaning cat cages. There are also boarding places as well that might be okay with a little volunteer work cleaning up dog soil or walking dogs.

    If you can get used to a few hours of volunteer work with pets, then you might be able to work your way up towards actually working a little bit at a pet shop, dog sanctuary, pet shelter, pet boarder, groomer, or etc.

    Sorry if I sound pushy about getting a job, that’s not my intention. I do think it is wrong that your mother is trying to force you into employment. I just want to show that easing into employment is a possibility. Hopefully that helps!

  • Also can I say that your writing is really clear and easy to follow?

    Thank you! That is probably due to my years of essay writing in school and university, I suppose. 

    I'm sorry to hear that you have issues with your mother. I suppose it is something a lot of us probably struggle with.

    I have about a year of experience cat-sitting for my family's cats and family friends' cats, but I struggled with the responsibility behind it and worked up a lot of anxiety around it. It would have been the perfect career for me; I could have had my own pet sitting business - I absolutely love animals, especially cats, as they are a special interest of mine. But so far, I cannot get past the anxiety behind the level of responsibility it. I have also tried volunteering at an animal sanctuary, but I had too many panic attacks and anxiety that I never went to the interview/first session. 

    What you are describing about gradually leading up to volunteering at the pet shelter would be perfect, but I can never seem to get past that initial step and the anxiety of a new place and people. It's incredibly frustrating, as I know that I am missing out, and I would greatly enjoy it. The times that I have pushed myself and pushed through the anxiety and panic attacks, they never last, and I leave feeling miserable and depressed. My mind instantly goes to the worst and thinks, 'get me out of here', and I get incredibly distressing thoughts. 

    I really appreciate your insight into this from a different perspective, especially as an employment specialist. I would understand my mum's perspective if I had never been in employment before and hadn't at least tried. But I have. I started working when I was 17 and worked 2 jobs whilst I was at university (one at home on the weekends and one during the week at uni) for 3 years. I know that I am incredibly burnt out from my time in school and employment, but ever since I was diagnosed, I have been suffering incredibly with skill regression and cannot function in the way I did before - hence why I can't even work one job, let alone balance 2 jobs and university as I once did. 

    I have started toying with the idea of opening a small business on Etsy selling art prints, as painting is a current special interest of mine, but I am fearful that it will take the enjoyment out of it, and I will get too fixated on earning money. In the near future, I feel that my only shot at earning my own money would be from being self-employed and working from home - but the trouble is that a lot of small businesses need the money in the first place to get started, and I'm just not sure if I can afford that at the moment.  

  • Gotcha, thank you for filling me in on your work history. That’s incredible you were able to handle so much with two different jobs, it’s no wonder you got burnt out.

    It’s a shame new environments cause so much anxiety and pain. The one thing that I can think of that could potentially help is to bring a safe person with you. I often function as a safe person to serve as a buffer during stressful situations like interviews and meeting new managers. Most employers - at least from my experience - are totally okay with you bringing in someone else to help. Your safe person could not only help you adapt to a new environment, but could also help in getting you out of there if you end up having a panic attack.

    My personal opinion is that the Etsy job risks putting too much pressure on your art. It would introduce deadlines, which if you have anxiety could be extremely toxic for you. Art should be enjoyed, not stressed over. That’s just a personal opinion, though. If you feel confident you could succeed at an Etsy store, by all means do not take my advice to heart.

Reply
  • Gotcha, thank you for filling me in on your work history. That’s incredible you were able to handle so much with two different jobs, it’s no wonder you got burnt out.

    It’s a shame new environments cause so much anxiety and pain. The one thing that I can think of that could potentially help is to bring a safe person with you. I often function as a safe person to serve as a buffer during stressful situations like interviews and meeting new managers. Most employers - at least from my experience - are totally okay with you bringing in someone else to help. Your safe person could not only help you adapt to a new environment, but could also help in getting you out of there if you end up having a panic attack.

    My personal opinion is that the Etsy job risks putting too much pressure on your art. It would introduce deadlines, which if you have anxiety could be extremely toxic for you. Art should be enjoyed, not stressed over. That’s just a personal opinion, though. If you feel confident you could succeed at an Etsy store, by all means do not take my advice to heart.

Children
  • Having a safe person was how I managed to get through the end of working two jobs - often my now fiancée would sit in the cafe I worked at until my shift was over. Before I quit my last job, she even had to come in the car with me as I was too anxious to drive alone and would help me through panic attacks. But it came to a time I couldn't even get out of bed and ready for work, let alone leave the house, even if she was with me. And I'm still in that situation now. I can't do anything or go anywhere alone.  Hence why having my own small business would be perfect for me if I can get past that pressure and toxicity you mention. Thank you again for your insight and advice.