Published on 12, July, 2020
Hello, recently I've felt like I'm at a breaking point and I'm not sure where to go and how to access any kind of support etc. I'm sorry in advance if this is not the place or not appropriate here, I just didn't know where to ask and this site came up a lot in my Google searches and seemed relevant to me. Also apologies if I ramble or get sidetracked bouncing from topic to topic, this is something very common when I try to communicate and it's common for any of my written work to be considered 'too long'. I had reputations on forums for being mr. wall of text and at college I used to be over double the allowed word count very often and needed help cutting it down. I am aware of this and will try my best to keep it short and not get sidetracked as I type.
This last month I've been going around in circles on the web looking for how and where to start addressing various issues that I'm slowly coming to terms with now. I was diagnosed with some form of Autism as a child though I don't have direct access to the details and was never told or explained much of this except when my learning support teacher told me briefly before I started college because she was assisting me in getting support at college for it. I have had 1:1 support through primary and secondary school (including time at a non-local specialist school whilst I was expelled from my first primary school), some support after school (through 'travel training') to take the bus directly to college as well as to get additional support at college and then fairly regular 1:1 support in college. When college ended this stopped suddenly and for the following years I'd naively thought that it was 'over' and that I should have just 'grown out of it' as if the condition was just supposed to be childhood thing and even then I still didn't fully understand it, this thought was also encouraged by the fact that this is how my parents treated it, as if it was some phase and now I'm an adult I shours be capable of doing everything 'normal' people can do (and I'm often put down for all the things I can't/avoid doing). I now understand different and am trying to come to terms with the fact I do have some form of disability that makes me struggle with these things even though I still feel like I sometimes deny it to myself and that I just need to 'try harder' and I get this constant feeling of failure. I've been struggling more and more each year both with my mental health (of which I scored 20/24 and 13/21 on an NHS online mood self assessment for depression and anxiety recently) and financially as I haven't been able to go out places to work, reaching out to make applications for work is difficult as is attending and succeeding in interviews (many of which I've just not turned up to as I over stress myself about it and withdraw entirely). I've also not really applied for any kind of benefits (I tried applying online for universal credit as it seemed the simplest and I was still partly in denial over disability so I didn't want to/felt guilty about the idea of having any money for it, as if I were to be cheating the system or something) and I really do *want* to work and and do the kinds of things other people do so I would absolutely be willing to try my best to follow any job search commitments of UC even it its to the detriment of my own health, but it never got off the ground because they told me I had to visit a sspecific centre to start my claim for ID purposes at a place I couldn't get to and they wouldn't accommodate for my Agoraphobia/Social Anxiety (I believe that's the correct term for it). There is one location I know a job centre exists because it's near somewhere I've been before and I could potentially get to by myself even if it would still be very stressful but they tell me I can't be moved to that location until after I've started my claim at the first location... Even though that initial appointment is mostly just to confirm my ID with documents, surely they can do that at the other somewhat easier to access job centre too?? Or why can't I scan them and send them digitally?). After a lot of research now though it looks as though I should be eligible for something called 'PIP' and on an online test scored 14 on daily living and 10 on the other section mostly due to not being able to make unfamiliar journeys and the preparation, anxiety and accommodation required for even familiar ones so it seems I meet the criteria but I don't know where to even start and all the results I find when trying to Google for Autism and PIP and support for it are horror stories that put me off starting the process entirely, especially with the possibility of rejection or having to have my parents involved with it when they don't even understand I'm still disabled. There's also mention of supporting evidence which it seems I should probably have in advance before I start the process, I've been trying to access my medical records online but I can't seem to without photo ID and I haven't seen a GP since I was a child and was taken to appointments, I don't even know how to go about doing that after so long and don't know who my GP even is (I know the location and could get there if need be). Reading through the PIP process and taking online tests have been demoralising even moreso as I come to realisations of just how much I seemingly can't seem to do that 'normal' people can. I tried to use Citizens Advice online chat to ask if there's any support for the PIP process but they just took me through my financial/living circumstances with generic questions (like 'do you have children', 'what's your income' etc.) and just told me after all that I can apply for PIP and Universal Credit, have me Gov links and closed the chat whilst I was typing to say they didn't answer my query and bring it back to my issue I contacted them for help with which was about help or support available in making that application. I feel like I need some kind of support, potentially even 1:1 to be able to go through a process like that but I don't have anyone. I do live with my parents but as I said earlier they don't see or recognise I have a disability so wouldn't be able to help with any of my needs in those areas, especially so my father who thinks the reason I don't go out is being lazy. I haven't really left my home except for mostly isolated incidents such as when my brother took me to get my COVID vaccination. I have started a zero hours contract, doing 5 hours a day at weekends at a nearby quiet warehouse that's on a familiar route and just those 2 days takes the rest of the week to recover from and prepare for the next week and I get this nagging feeling of not knowing how much longer I can keep it up as each week I feel worse than the previous when I had hoped the opposite and that I'd be able to grow into it and do more over time. I keep missing breaks as I'm not confident in taking them without being approached and directly told by someone I can take my break now and I don't eat, drink or use the toilets while I'm there because that makes me feel very uncomfortable. I've also started having sharp pains in my knees that I ignore and work through because I'm nervous about being seen not working or that I might not be offered these hours which I need as my only income. Speaking of I'm also unsure if I have a joint problem, I have vague childhood memories about joints (notably hands/fingers) being brought up with doctors but I think I saw a lot of doctors and stuff with autism etc. that it might be that I'm misremembering the joints being a diagnosis rather than just something that I had talks about whilst there. I did have some accomodations made around writing for extended periods which made me think it may have been a diagnosed issue but as mentioned before I haven't seen a GP nor been able to access my records to know what I have/haven't been diagnosed with and by what name. I just don't know what I'm going to do next, generally. My life as it is right now I don't think is sustainable and I genuinely can't see myself living too far into the future if nothing changes somewhere somehow. I turned 30 this year, and it almost feels like I've waited too long on dealing with some of these issues that maybe it's too late? I can't see 40, I just don't see it as a birthday I'll reach and can't picture myself able to sustain myself that far into the future.
Where do I go from here? Is there any hope at all or any step I can take to at least get on some kind of path to a future? What support if any can I get? It's supposed to be Christmas, a positive time of year and all I feel is existential dread.
Thanks for the response.
1) I can understand I may have a right to the records but I can understand from a data protection perspective that I could just be anyone so accessing online without a photo ID won't likely be easy or even possible. I'll look into what I can do with my GP
2) I'll look into the support assessment thing too.
3) As for PIP that's what I seem to hear when looking for PIP and Autism, that it's very difficult, even if online tests suggest I should make eligibility by a fair margin.
4) At the moment I don't really have any informal or formal for help so I'm willing to take whatever I can get in that respect.
5) As for reasonable adjustments regarding joints, this is probably still a question mark for me. I maybe got a bit sidetracked mentioning my joints because whilst I do have sudden pains the job does involve a lot more walking than many in a (in current season) cold environment and yet I manage to make it through physically for 5 hours a day each weekend. Not to seem like I'm sticking my head in the sand for it but if it was that much of a problem I feel like it would present more of a persistent challenge. It's been like this since as long as I can remember and hasn't got better, but hasn't got worse. Cold weather does it worse, maybe in the summer I won't even notice, I'd have to wait and see if I can keep the job until then to know. I'm sure there's probably so many more people working through equal if not more physical discomfort, especially just through age and wear and tear, I'd feel guilty if I were to have that factor (diagnosed with something or not) in to having some physical adjustments whilst seeing others just doing the norm. It's more the mental barriers that I'm struggling with, but I'm not sure there's any adjustments work could make for that. In terms of the job centre and not being able to get there, I wish they'd accept that adjustment, but the work environment is quiet, there's very few staff and because of all the walking it's rare to even see another worker and if you do they're too busy picking their order to worry about sudden social engagement. My shifts are sent to me by email and they explain simply, offer me an easy 'no' if I don't feel like it and I've not even told them about my issues, they just seem to do that for everyone which feels accommodating for me and the hours + weekends + location means I don't see people or traffic much at all. Despite that though generally I'm struggling with it still, but I do have some faint optimism that maybe I could keep this going. The only issues though the zero hours contract means we can end up finishing early and I only get paid half the day but it still consumes the same mental energy as if it wasn't half the shift and I could also not be offered the shifts at all (hasn't happened yet, I've done every weekend so far) but I still feel I can only manage the 2 days (10 hours) a week which seems a financial worry maybe but I don't have a good understanding of personal finances, I'm rather decent at maths and can understand some business finance/economics so it seems weird to me that I don't know how to budget or how much I need for essentials and break down what those essentials even are. But, if I can contribute fully to my living with that income alone (or at least up until I can start to get long term plans in motion) then I can be a little more optimistic about that perhaps.
6) I definitely want to try and avoid the head in the sand, being as I've disregarded and ignored this childhood diagnosis for so long already it seems I have a lot to catch up on so I can't really afford to lose anymore time waiting to get my ducks in a row. The one thing that hurts about realising about my Autism is that idea that, whilst my situation might be able to get better and I could manage myself better, It seems I won't get 'cured' and a lot of the struggles I have will always be struggles. Whereas at least when I thought I didn't necessarily still have it before I could try and convince myself I could one day 'fix it' re all my difficulties giving me small glimmers of a hopeful future.
7) I'll try my best to try and think on long term plan and solutions. One problem I have with the short term getting in the way of the long term is that when I try something I can get disheartened easily if I'm not seeing any improvement or changes quickly enough or if I'm feeling worse despite whatever I'm trying to do. I know things don't change overnight but I feel so late already and playing catchup and being on an edge that I fear not making it long enough for longer term solutions to even take shape if I can't get major short term 'fixes' that are likely unrealistic/impossible.