Published on 12, July, 2020
Hi, I'm a 24 year old newly diagnosed with ASD last week. I consider myself quite disabled, I also have Fibromyalgia, Chronic Fatigue Syndrome (M.E), Social Anxiety Disorder, General Anxiety disorder, Chronic Depression, Hypermobility syndrome and Asthma, I have other lesser conditions too plus I am still constantly back and fourth from the hospital having tests done for other illnesses. I've never worked and had to leave college early on mental health grounds when I was 19, I've been sat in my room unable to do anything since. My Mum is basically my carer, she does so much for me regarding everyday basic tasks, I also only bathe/wash myself once per month on average as I just do not have the energy to do such a basic thing more often than that.
My Fibromyalgia, CFS, Anxiety, Depression and Autism are the killer conditions for me, the Fibro causes 24/7 pain and stiffness all over my body, I have to take an entire cocktail of medications and high dose painkillers just to wake up every day and it's still not enough to get me out of the house doing 'normal' things. The Chronic Fatigue makes getting out of bed everyday impossible most days, I honestly spend 95% of my time in bed because I am just that exhausted. I cannot do things I used to enjoy doing such as horse riding, I even had to rehome my beloved German Shepherd as I couldn't walk him any more and I have lost boyfriends due to not being 'normal' enough for them which is obviously heartbreaking and bound to make anybody feel worthless.
I am permanently anxious for no apparent reason most of the time, I have no fingernails as a result of constantly chewing them off. I rarely leave the house unless it's for an important appointment and even then my Mum has to attend all outings with me, I never go anywhere alone and am still unable to go to most places even when accompanied. I have never had any friends and still don't so going out and taking part in social occasions is a no no for me. Depression is mainly caused by societal pressures to 'be normal' when I simply cannot do what everyone else can. Last but not least the Autism, I generally dislike people and avoid them at all costs, I don't understand them and interaction is incredibly draining to my already weakened mind and body.
It's extremely frustrating having all these 'invisible' illnesses, I find myself not being taken seriously, especially by the DWP. I was claiming ESA (WRAG) but they kicked me off for no reason a year ago and now I'm on Universal Credit in the WRAG. I am fighting to be moved to the 'support' group to get the higher rate, I only get £350 per month, it's not enough to survive let alone live, I cannot live on this amount long term. I'm already in debt and having to rely on credit cards for bread and milk, it's not right. They already do not make me attend appointments due to my conditions so I don't understand why they can't just move me into the support group since I am obviously entitled to it and I am already being treated as if I am in it?
I'm feeling so depressed with everything, money is a huge issue, I'm sure I'm entitled to other benefits given my circumstances but I honestly have no idea where to start with it all.. So I thought I'd come here and ask you guys for advice, is there anything I can do especially since now I have my official ASD diagnosis?
Thanks in advance.
I'm in a similar position to you - I'm aspie and have a load of health problems too including CFS and chronic pain. From what you say, you should qualify for the PIP payments - before you embark on this process, make sure you have up to date letters from your specialists and you have someone who can help you with the complex form - there's language you need to use and there's a chance you might contradict yourself with too much information.
If you get the PIP, it opens up the higher rate of ESA and other medical support.
Be very careful with the DWP - in my experience, they lie and falsify data without hesitation - so make sure you have records of any dealings with them and make sure you have someone with you at any PIP assessment as a witness.
Be prepared for all sorts of dirty tricks from them - they love to reject people with hidden disabilities.
Good luck with it all.