Evening everyone,
I was diagnosed with Autism on Sunday after a long wait and finally having to go down the Right to Choose pathway. I am 49 and live in Southend-on-Sea in Essex. I moved here three and a half years ago after losing my dad, mum passed 8 years previously. I was both of my parents carer over the course of sixteen and was still living in the family home that I grew up in. Unfortunately the council wouldn’t let me stay and wouldn’t re-house me as my savings were over the threshold for a council property, so I was forced to rent privately and so initially moved in with my sister for six months, which was very hard, and then got my own place in January 2023.
My autism story begins with my dad. A couple of years before losing dad I was diagnosed with depression, so I did a bit of digging and research online and did several different tests the main one being with Clinical Partners. So with my dad’s encouragement I arranged a doctors appointment, unfortunately I had to wait a while, in between this, we lost dad after he had a critical fall. This was in that hot summer of July 22. His passing shocked us. My appointment with my GP was the following day. Luckily my sister came with me and we got the ball rolling. Would you believe it my initial meeting with a Mental Health consultant was the day after my dad’s funeral. All the while we were waiting, I was under pressure from the council to find alternative accommodation, luckily the housing officer was very understanding. The clearing of my childhood home that I had lived in for 46 years was extremely emotional not just for me but for my two older sisters.
As I say I eventually got my own place with the help from a fantastic local estate agents and I moved in just after Christmas 2024. Shortly after this I started a job at my local hospital as a Ward Host. I lasted three shifts. I could not cope, I was on my feet non-stop for 12 hours a day. But the time I got home I was extremely tired and went straight to bed ready to get up at 5am the next day to go back to work. By the third day I’d developed a serious back issue, which meant I had to use ibuprofen gel. Then came the moment that broke the camels back. I was going round the Ward giving patients their meals, when lo and behold I was greeted with a new patient who reminded me so much of my dad. He was crying as he had messed himself, I got an HCA who helped him, but I broke. I went to a side room and broke down, it was too much too soon and so I went off work for two weeks with Depression. All this time from August 2022 until that point I had barely heard about my diagnosis. Anyway, I ended up on PIP and LCWRA for my Depression, Mental Health and issues with my back. By this time my depression was getting worse and I enquired about some CBT. I had this in the summer of 2023 and frankly it was a complete waste of time, it did not help me at all.
In June 24 my landlord decided to sell up and so I was on the move again to where I am living now. A quiet little cul-de-sac in a 1 bedroom house. Eventually just after Christmas 24, my sister encouraged me to go down the route of Right to Choose before the government abolished it and so I was put in touch with Clinical Partners who sent out various questionnaires to be filled out by myself and my informant (my sister). I eventually had my first video call just before Christmas 25 and my sister had hers a week later, it was all very quick. Then on Sunday just gone I had my diagnosis that I had autism. I told my sister who was not surprised at the outcome.
But then today, my sister and I had a row, as she feels I need support on keeping my home tidy and clean and looking after myself. Well, my home isn’t filthy and is reasonably tidy it doesn’t smell, there’s no mice, rats, cockroaches or mould ANYWHERE. Yet she claims I’m living in filth. It wasn’t that long ago she told me how well I was doing. I had a poor Christmas as I missed my parents greatly and regrettably I didn’t do anything to help my sister, for that I didn’t apologise to her afterwards. But what hurt was that she told me not to use my mum and dad’s passing as an excuse to mope around. And then today when we were arguing over the ‘state’ of my house, as she put it, I said to her it was part and parcel of autism and that the house wasn’t dirty anyway and she then told me not to use being autistic as an excuse.
Before we lost dad, she made a vow to him that she’d look out for me. Which, in fairness, she has done. But now she has told me that she is breaking that vow and that I am no longer her responsibility. I have never once asked her for her support, by and large I’ve coped with doing things on my own, sure there have been the odd occasions when I have forgotten to take meds, but that it doesn’t happen often. In my report I got from Clinical Partners I was given a list of local support groups. I told her I wasn’t interested as I didn’t need the support and I am a very bad socialiser and would be very much out of my comfort zone.
I have an appointment tomorrow with my Gp and I am going to ask him for therapy for PTSD as I feel the loss of not just losing my mum and dad, but my care as well as my home of 46 years. What I haven’t mentioned her is that I saw my mum pass away and even now 12 years later I can still recount that day near enough minute by minute. We had issues with my dads passing as the coroner couldn’t give a cause of death until a post mortem had taken place, luckily we were able to give dad a fitting send off shortly after he passed as we were given a temporary death certificate. That process took a long time as we also made a formal complaint to PALS about the care my dad received in hospital.
I’ve to deal with a heck of a lot over the last 15 years or so. I haven’t even mentioned the fact I was bullied all through school and into work.
Many apologies for the long first post, but really needed to get that off my chest.
