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HELP!

Gat

I was diagnosed with ASD (Autism) at 37 during lockdown. It was a 7 year or so process of falling into destructive behavioral patterns, and a lifetime struggling at school and in work and social situations.

I find myself so stuck and trapped at the moment. I am in a job which is just too much for me. Too much drama from people. I get people literally say horrible things to my face and behind my back. Its all shouting, we shout out coffee orders to customers, I come home and my parents shout at each other, and my Dad says nasty things to us all our lives.

It has left me feeling, well, ******** more so in the last year. I don't want to say the word, especially in the last year. I have been told that if I need to reach out, I can like call the Samaritans. Talking to someone is nice sometimes, someone who understands, but the call always ends after like 40-45 minutes, when they get fed up of me speaking. And tbh I am tired of talking.

I don't sleep as much as I should. I have started going to bed earlier on nights I know I am working the next day, as sometimes I have to be up at 4am for work. But if I have like 2 days off, I like to go to the pub and have a few beers or cigars or something, or karaoke lol. I really want to cut down my unhealthy habits, but with everything else, it is not something I feel I can achieve alone, and it will be like when things start falling into place, and I fill the empty gaps in my life, then I can replace them.

My experience with prescription medication (antidepressants) is something I will never go through again. All power to those who do take them, but they have never helped me, and I have taken at least 7 different ones. Not to say there isn't more, but I don't want to be another statistic on ADs, and don't tell me there isn't some kind of incentive for GPs passing out these pills willy nilly.

Counselling, well it helped in specific situations. I was having a breakdown over lockdown, which led me to make some very poor behavioral choices, and counselling helped me to understand myself a little better. I wasn't diagnosed then. I am on the waiting list for some low cost counselling, but with working shifts, I can't really commit to one specific day, which makes it harder for both of us, and also this isn't targeted at autism, so it might be another waste of time and money. Even paid counselling can be time limited.

I have come across such a thing as 'autism life coaches', and had an assessment with one of them, but the cost was too much to afford as I only work part time. I, in January, went through a 9 week psychoeducation course with South London and Maudsley, the guys who diagnosed me. While it was helpful, even to some degree therapeutic, I again have been left on my own to struggle with no help from anyone.

I cant claim PIP, even with my spinal issues, its funny how I was easily able to get a freedom pass (which is only half useful to me) but I can't even get one point on PIP. I was refused 3 times, I appealed twice, and think I gave up on the third time.

I have tried to reach out to the council for a social worker, but I would need to fill out a needs assessment, and it is pointless. I did once, and when they got back to me I knew because I could wash, travel, operate the microwave (whatever whatever lol) I wouldn't get any help.

I was hoping someone would be able to help me get some housing, or practically help me to see if there is something I can claim to help towards that, but I recently filled out the calculator myself, and £30 a month isn't going to pay the bills

Where I am struggling is practically. I need help to get out of this job, I am on that journey. I found an organization who might be able to help me. They also work with the IAPT service, I wonder if they would be offering CBT again, because, along with a lot of counselling and talking therapy I have had, didn't work. I wrote an essay to them, which is what I tend to do, so there was a little mixed confusion over what I was asking for, but I hope that has been cleared up.

I need to get out of this living environment. My Mum can't care for herself. My Dad, and myself can't cope with it. The shouting, the 'your uselesses' or 'i've got 2 handicap sons' And remarks like that. I don't see autism as a handicap, more a superpower, which I have yet to access.

I am a creative person. I play drums in the local church, I like to sing at karaoke, and over the last, well I guess 10 or so years I picked up a camera (or a few) and I am on my second DSLR now. I have won awards for my photos, but they don't really mean anything. I do have a portfolio, but its kinda empty and I need to really travel more and find inspiration, tbh I don't necessarily enjoy photography, I just seem to have a gift at it. Maybe it just depends on the environment.

I look forward to hearing any suggestions, any organizations you can signpost me towards (it feels like pretty much every organization I have been signposted to or have reached out to can't help due to funding and one flat out told me it is pointless trying to get anything from the council)

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Comments

Albus_Alumni

Hey again @Gat I honestly can empathise with a lot of what you've described here. I was diagnosed ASD nearly two years ago and found since the diagnosis, it has helped me with self care a bit as I now know some of the whys.
Regarding PIP, did you go to a tribunal at all for any of your claims? I'm claiming PIP, but it took me fighting all the way to tribunal, where I went from 0 points to 22 points and an apology, so it's worth doing.
For mental health, it took many many years for the GPs to find a medication that worked for my neurospicy brain, which unfortunately can often be the case for ND folk, but I totally get not wanting any more pills! The same goes with therapy. CBT did absolutely nothing for me, but I found DBT actually did help a bit and I've had a few ASD friends say the same. But I get with shift work, getting any regular appointments can be a nightmare. Though many local authorities offer free counselling services which include DBT, so it's worth asking.

Which leads me onto work. You're within your rights to ask your manager for reasonable adjustments so if having regular shifts would be better for you to cope with, you could speak to them about that, which could also help in the hunt for some talking therapy? There's also Scopes employment support service, who may be able to offer some advice?

I can't offer much advise on the living arrangements unfortunately, but I do understand that need for a safe haven to decompress. I see autism as a disability, but only because the world is designed for neurotypical people, so it all seems weird to me, but the things we can do well, we can do VERY well thanks to good old autistic focus. 😉

Have you thought about offering your photography services to local universities or similar places? It could get you some good practice in and I'm sure there's people there who would love to get some new pics done.

The lack of funding for many places is horrible right now, but it's worth asking again with many places. 😊

Gat

I gave up on PIP. And if I did go back down that route again, I’d have to apply again. I don’t know if a tribunal would incur any costs.

Im glad you found some success with tribunal, I dunno, personally I’d consider it I’ll probably just apply myself as I’ve had help before.

As for sending my photos to universities etc, I’d say why not? And where to begin. I only have a few photos and maybe I can do a little research. I can’t sell many of my photos because they have protected landmarks in them.

I am willing to put some effort in, but I am sincerely burnt out and don’t have a lot of strength, I don’t want to get out of bed in the morning. I have no motivation to do anything, and half of the time I end up doing something wrong as far as others are concerned

Adrian_Scope

Hello @Gat

A tribunal doesn't cost money, it just takes time. Did you have help with your PIP claims the previous times you applied? How long ago was the last time?

Gat

It's been a while since I replied to this post, so I will post some updates (not that there is much in the way of updates)

I have considered applying for PIP, but I have an ADHD assessment coming up, so once I get that diagnosis (I expect to) that should be 3 things I would be claiming for.

The annoying thing is with the 2 slipped disks in my back, its not easy to get the information about my scan. Any link has expired, and to be honest I am sick of contacting people to try and chase up my medical history. Seems to be once or twice per year now.

I also have a situation at work, where the mystery shopper scenarios are changing. We are now expected to smile at customers. That's to be expected right? Like we should be doing that. But when people are saying nasty things behind your back (which I can hear) and to your face, and with the micro-management, leaders with almost multiple personalities (over 3 years there has always been someone like that) who should not really be in a position of leadership in any way shape or form, and with everything else I am dealing with at home and in my personal life, it's not easy.

HR don't listen, management don't listen, had an occupational health assessment and it didn't do anything to help me. I wonder if the MS rules apply just as much to people with mental health problems and neurodivergences.

We get a lot of homeless people coming in and abusing us, stealing, its horrible. I don't feel safe. The police would only really turn up in an emergency

I have wanted to get a job working in a supermarket, but I have seen that most jobs like shelf stacking, etc are overnight work, which I am not willing to do again. I had an interview for Morrisons, but it didn't go well, for that reason, and I wasn't prepared.

I have been having panic attacks again recently, for a wide array of reasons. Crowds don't help, and we serve 5,000 customers a week. I only work part time 3 days, but still it is hard for me.

I have considered college, to see if I can change my career. I was looking at I.T, but I.T can just be basic I.T. I am looking at it more broadly. And anything I am finding, either you need qualifications to get in, or there is a cost. At 40 I don't really want to go back into studying, and home study, well, when my parents are screaming at each other 70% of the time isn't really something which will work for me.

I have attended an online group session where we shared each others needs, and all pitched in to see how we could be supported, advice etc. But the way it was structured, was confusing to me. It was almost like an anonymous meeting. I attended one of those way back for something I was struggling with. I also went to an in person one, and found that worse, and to be honest I didn't feel safe.

I am on the waiting list for counselling, and got invited to like a group session for men, but to be honest I am just wondering if it is going to be helpful or not, and finding the time. I mean now I am reaching out, so not exactly a waste of time, and far more positive then posting on Facebook all the time (I fell out with a friend on there and IRL recently, but it was mostly his problem.

So I have considered things which have been said before, and also I have done quite a bit of research about groups I could attend for various reasons, but I just seem to get caught up in life. Sometimes I struggle to sleep, if I sleep more than 4 hours then that is a good night for me atm. And having to wake up at 4/5 am for work (even if it is 3 days a week) really does mess with my sleep.

I feel like I am doing the right things, and some of it is just being patient, but I am still sinking under the weight of everything. I don't really have anyone I could talk to (that would understand anyway) and without sounding negative, these guys I have known from environments which push positivity on you, where as I really need a hug, someone to listen or even help me to figure things out. Its unfortunate I feel a burden sometimes.

Enjoy your day and weekend guys

Albus_Alumni

Heya @Gat good to hear from you again. 😊

I'm glad you're on the list for your ADHD assessment, but please remember PIP isn't about a diagnosis, it's about how you're affected on a daily basis, so you don't need to wait for that diagnosis letter.

With regard to work, you can ask for reasonable adjustments, which are covered under the 2010 disability act, which hopefully your boss will have heard of and if they havent, now's a great time for them to learn. 😉 As I mentioned before, Scope have a great Support to Work service, it may be worth having a chat with them and see what they suggest?

I am so glad you're reaching out though, that's brilliant to hear, though I know it's not easy and there will be losses as well as wins, but you're heading in the right direction. Is there anything stopping you from joining the mens group? I know a few friends who've joined local ones and found them really helpful. often everyone's there for the same kind of reasons, so it's nice to chat to someone who really gets where you're at. It can be really good if you do need someone to talk to.

I get the getting caught up in life thing, it's very easy to do, especially as us autistic folk really like our routine, so it's so easy to just carry on with it and resist any changes. But change, despite being really flipping terrifying, can actually be a really good thing. Just be gentle with yourself.

Gat

https://forum.scope.org.uk/discussion/comment/904481#Comment_904481

unfortunately the occupation health assessment at work done nothing for me, in fact it just alerted my manager. When he came in as a new manager in our store, I went above him with various issues of staff mistreating me and saying nasty things about me, and when he found out he wasn’t best pleased, that I didn’t go to him.

Well I was really not in a good place and he wasn’t there, and based on my experience with previous managers, I didn’t have much confidence that he would listen.

Reasonable adjustments were listed in the assessment, with me being in the driving force as to what I felt comfortable doing. But it is just a note in my file, and come September, they are going to start manipulating how people feel again.

I had similar experience in my previous workplace, and I did have someone one my side, again though it didn’t really do much to help my case. And that was a massive bus garage, so there was more opportunity.

This is a small shop. Were everybody knows each other to a degree. I don’t see how outside intervention would help in this case. Based on experience I don’t see how it would help my case at all.

in regards to PIP, I am just trying to gather all the evidence I can to help my case. As I said with my spinal issues, it’s hard to get to the diagnosis which lists everything. I’d have to request the results again, I don’t really have the strength or patience to keep requesting my medical records.

I’ve taken everything which was advised to me, into consideration

Rachel_Scope

Hi @Gat I'm sorry the occupational health assessment hasn't changed things. It's so difficult when it's a small team and there are issues. Scope have a service that could help you find a new job called https://www.scope.org.uk/employment-services/support-to-work They'll discuss your needs and wants and help you find something more suitable. They have access to companies that are more inclusive of those with disabilities too. Maybe that could help?

Gat

https://forum.scope.org.uk/discussion/comment/904684#Comment_904684

Hi Rachel I signed up thank you

Gat

it’s more that it is a big team in a big shop which is a massive company

Rachel_Scope

Hi @Gat I'm so glad you've signed up 😊 They'll be able to help you. I found retail exhausting and it was especially difficult on the days I was struggling with my mental health. Have you thought about what kind of work you'd like to do?