Published on 12, July, 2020
Hi, I am new to this. I hope this is okay to post. I am 30 years old. I was misdiagnosed for a decade in the mental health system and was finally correctly diagnosed with autism at the age of 27, exactly 10 years after entering the mental health system. I have unfortunately spent over 7 of those years as an inpatient. It has been an incredibly traumatic time for me. I am finally out of hospital after the biggest battle of my life. As soon as I was diagnosed my mental health has been the best it has ever been as finally everything makes sense. I am so grateful I finally know why I am the way I am. However due to so many years stuck in the system and stuck in hospital, it has meant that I have never been in employment before. I really wish to be able to work but I am aware that it is going to be very challenging to get a job with my lack of experience. I have done several level 2 courses this year and have done some volunteering also. I am also plan on doing more volunteering soon. I feel like honesty is the best policy for myself - I find it difficult to say anything but the truth if I were ever questioned why I do not have much on my CV for the past 10 years. I feel like when applying for jobs in the future I just want to be honest about my situation and what happened and hope that someone gives me a chance. But I am also aware that some employers may not be keen.
I was wondering if anyone else has gone through something similar and how they deal with it? How do you tell someone you spent a decade being misdiagnosed, stuck in hospital, and now desperate to get on with my life and hope they do not judge you for being failed by the system. I feel incredibly alone in what I have gone through even though I know sadly my story is not unheard of. Thank you for reading this
I am sorry that you had the wrong treatment for so long. This needs to stop happening. I am trying to look for voluntary work and am struggling to offer myself for free and references needed. It's a good job I have one when I was a super moderator on a computer forum and through a vicar. I just wanted to say you might want to be doing delivery as I see young people men and women doing it like with deliveroo these days etc. The last unit I was at they encouraged being true in CV's, but you well you need to sell yourself as well and being honest. Did you gain any experience in hospital or in the community previously.
Hi, thanks so much for your reply. I really appreciate all your ideas and support. Those are very good ideas. Unfortunately I would not be able to do any delivery work as I cannot drive - I got covid 2 years ago the exact month I was due to leave hospital and I especially got brain inflammation as a result of covid and became acutely unwell for the following year. My very poor health meant my discharge got delayed by 1 year and then it got delayed by a further year because of how slow my community team were in sourcing me any suitable accommodation. But as a result of having had covid, I now have hundreds of neurological symptoms including seizures. Therefore I am not able to drive/do delivery. I have completed several level 2 courses this year and am about to do another. I did some volunteering in a charity shop before I got covid and had to stop so I have them as a reference. I have someone else who can give a personal reference. I was a student nurse for a year, 10 years ago before I got into the system. And did the odd volunteering before I went into hospital. I just applied for a job in a cafe to serve the food. They openly encouraged applicants with disability and neurodiversity etc saying they do not discriminate and like to give opportunity to those who usually would not be given. I found that really refreshing to see so I applied for the job but I haven’t yet been invited to interview, I’m not sure disclosing my “I was misdiagnosed for a decade with a mental health condition I never had so spent 7 years in hospital and then I got covid and now have an inflamed brain but I don’t want it to stop me from working” helped… lol you can’t make up my life! Thank you for the ideas though I really appreciate it. I am thinking of perhaps in the future working for myself as I think it will be so hard with my health and my backstory of misdiagnosis to find an employer who is understanding. I’ll see how things go, I have recently started volunteering at the community garden which I enjoy and just signed up to some other volunteering so I’ll see how it goes. Thanks so much for your ideas though. Were you also misdiagnosed in mental health hospitals?
Hi I was thinking of you the other day about how you are getting on. How are you? Have you managed to find a volunteering position that you enjoy?
I was volunteering at the rooftop community garden over the summer which I really enjoyed but that finished at the end of August until it starts back up in Spring. So the past few weeks ive been volunteering at one of the local food banks in my area. I have really been enjoying it a lot. The people are really friendly and welcoming and I enjoy sorting out the boxes and being part of a community as there are a huge number of volunteers. I find it difficult on a sensory level as there as so many people constantly talking - I am shattered the next day from the sensory input but I do enjoy it. I do 4 hours once a week but from next week I am aiming to do the full 6 hours and hope I can manage on a sensory level. For now this is working well for me and tbhwu it is helping me with my social skills. I hope you had a nice summer? And are doing well?
They sounds like a lovely idea re therapy in a peace garden. I too love to be in nature - for me, my favourite are trees! I absolutely love trees! I hope you hear back from the old people’s home. I’m sure they will really appreciate you being there. Hope it’s a lovely summer! yes thank you, I have been physically recovered from anorexia now for 4 years and it’s mentally the most recovered I have ever been. I never thought I would get to this stage in my life. Just funny how as soon as I got better I got covid and everything went wrong lol. Now that my health is stable and symptoms manageable I am really enjoying doing something everyday and engaging in lots of different things in thr community. My primary focus is to regain my physical health from covid and mentally begin to heal from the trauma of the past decade. But alongside thst, I will start to do some volunteering and level 2 courses. I did apply for the server job but haven’t heard from them. Even if they don’t offer me interview I think it was good practice for me to apply (I only left hospital 2 months ago lol) after being tortured in hospital for years, I am grateful every single day that I am out of there. wishing you easier days
Thank you, I did some therapy work in a peace garden community garden as well. It was interesting what I did. We did stuff like apple coring as well. I was referred there by my nurse. I like being around water and they lacked that there so I decided to do my own nature days out instead. Juggling the anorexia made it tricky, so hope you can keep yourself well in the community to be able to engage with these things. I am just waitng to hear back about the social activity work in the old peoples home now. I am having a bit of a break over the summer and hope to do perhaps start doing something in September. Enjoy your first summer out in a bit. I know that was a good feeling for me.
Thats great to hear that there was a unit which recognised the autism but a shame they couldn't formally diagnose. Im so glad to hear you eventually made it out but it’s so wrong that you spent so many years in places which weren't appropriate. Thank you for sharing that as it makes me feel less alone in my situation. For me it was also the same issues as yourself. yes thank you i will do. For now i volunteer at the community garden which i enjoy and ive just signed ho to to adhoc volunteering things that might pop up in the community for people like decluttering (i love decluttering and organising!! And wish to do that as a job in the future!) but i haven't yet started that yet as i just signed up yesterday. I also am signing up to volunteer to sort out the the food donations at the local community place. But I’ll come back to let you know how things go after a time. I hope you manage yo continue finding volunteering opportunities where you live too. Im sure people will really appreciate you
Thank you, I agree with you there are some tell tale signs that are unique with Autism and a co existing anorexia. I think though there still may be some varitey among autistics as well, like for some it may be a numbers thing which it is for me as well and almost like a specialist interest at times it seemed and some it may not be, I think I have an obsession with numbers thing, but try and moderate it for my mental health. Then there is the sensory element with food as well for me and noise and lighting issues and more. I was treated in 2015 in a unit who were knowledgeable about ed and autism and they spotted me, it's just that they didn't have the ability to do the professional diagnosing but in house version and used that to guide my treatment, although there is still a difference between a professional diagnosis and in house one. I did get some adaption understanding but I was a long term case and treated in some very inappropriate units like for those much earlier into the ed and it wasn't right for me to be in such a restrictive unit basically locked up. I was moved between four different units until I finally ended up at the right unit for me and then I fought tooth and nail to be discharged
Do update when you do find a voluntary job, fingers crossed for you
I’m so sorry to hear that you too have spent many years in and out of hospital and generally in a system which did not recognise your autism. I too have spent most of my life with an eating disorder however I was always denied any help for it one reason being my misdiagnosis. I think it’s sad that so many signs went missed in people like you and I. I don’t know if you can relate or not but for me I find that with anorexia, there are often a-typical signs that give clues to someone being on the spectrum rather than someone who is solely suffering with anorexia. For me, it all got missed and I wasn’t believed. Wishing you all the best and hope that you continue to gain more experience volunteering/being in the community. I really appreciate you sharing what you have with me. It has made me feel far less alone in my experiences.
It sounds like you've got some really good plans there, I hope something comes of it for you. I am diagnosed with autism, late diagnosis as well. I have also have an eating disorder as well and I was inpatient for 3 years and treated in some hospitals that wasn't appropriate for my condition and neither my autism which was undiagnosed at that point but they was aware of it which would been my traits then until a professional diagnosis which I've got now. I also spent too long in inpatient. I also did four years under a community treatment order before I left the services and returned as a voluntary patient more on my terms and no more coercion. I relate of course to the lack of CV as well.