Misdiagnosis in mental health - late diagnosed female

No problem at all! I hope they help you!

Hi thank you so much for these links! I really appreciate it and am very grateful for your message. Yes, I too agree that I prefer to be honest about my situation and hope that someone out there is willing to help me. Thank you for helping me with these links, I will take a look

Hey Rox. I was diagnosed at 30.

I have read through your thread and I hope that you're doing well now, I see you've done some volunteering over the summer which must be something new and exciting!

My advice would be to be honest and open where appropriate when looking for employment. There are a number of reasons I could list out but the main reason is if an organisation doesn't want you based on your openness and honesty about your diagnosis and past experiences then you know that you can bin them off immediately and move on to the next one. Why would you want to put yourself through the stress of working or volunteering for an organisation that isn't going to understand and support you? 

You may already know about these resources, but some of the links I have saved to help autistic people find work, work experience or volunteering opportunities. It's best to work with organisations that can bring out your strengths whilst being supportive of your autism. There are also organisations that can give you advice on things like CV writing, where to look for work, interview skills, etc.

Just a few things to have a look at, if you haven't already:

https://www.autism.org.uk/what-we-do/employment

https://www.autism.org.uk/advice-and-guidance/topics/employment/seeking-work/autistic-adults

https://www.autism.org.uk/what-we-do/autism-training-and-best-practice/training/e-learning

https://www.autismcentral.org.uk/guidance/finding-job

https://employmentautism.org.uk/i-am-autistic/

https://www.ambitiousaboutautism.org.uk/what-we-do/employment/work-experience-opportunities-alerts-signup

Hopefully, this is useful for you.

All the best!

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 

Thanks for your message and your experience. I hear what you’re saying. For me personally it doesn’t sit well with me to lie in such a way. I cannot physically go back in time and fill those gaps and they are incredibly long gaps. I do not see how else I can explain to someone why I have extremely little/nothing on my CV after 10 years. In my opinion if I don’t explain it then they will just reject the application anyway as there will not be anything on there for 10 years. I do get what you are saying that people lie all the time but in my particular circumstance I am unsure how I would be able to lie about such an extreme thing if that makes sense? I also am incredibly honest person by nature and it’s not in my values to lie. I find it very hard to do. I do get what you are saying in that other people lie all the time to get a job but I personally do not feel comfortable to do that especially when there is no reasonable lie for a 10 year Gap. I feel I will explore my options and see if I can find an organisation which is specifically aimed at employing those with autism. I know of one nearby if I get funding. Thanks anyway 

Thank you so much for your kind message. I really appreciate it. Yes I am very much determined to not allow what happened to stop me getting on with my life. They have already stolen over a decade of my life so I don’t want to allow them to take my future too. I will try to make things work. It doesn’t help that I got an inflamed brain post covid exactly the month I was due to leave hospital, 6 months after my autism diagnosis. It’s now 2 years and only now my symptoms are manageable. I wish to get my story out there so what happened to me in my life doesn’t happen to more people. Thanks again for your kind message x

I’m sorry to hear you too were misdiagnosed. Yes I absolutely agree with that last sentence. Hope things are better for you now that you know x

Misdiagnosis is relatively common. I was diagnosed in my late 40s, having been treated for depression/anxiety for 40 years. Those conditions were comorbidities of trying to exist in a NT world.

Best wishes x

You sound so incredibly strong,  wanting to make a future and not looking back with bitterness which some may do. And this would be understandable. I am diagnosed and work supporting adults iwith mental and physical health problems n social care. I find that over the decades of observation it is the people with strong positive attitudes,  wanting to make life better and do their best,  that have the greatest outcomes. So basically bless you,  go for it, take all the advice you get from people who love you and enjoy the rest of your life.

you also find that the best option in the case of unemployability is to join a agency..... why can a agency get you work easy? .... because THEY lie for you, they know that honesty is bad, so they take your cv, and they fill it in, they lie, if anyone gets called out on it which they never do as employers dont really care about truth, then they can say they must have mixed your cv up with someone elses.

my agent claimed they could see i had extensive experience in warehousing so offered me the job im still in now.... i did say thats not right at first and they must have the wrong cv... they ignored that and said it doesnt matter.... i understand now, they lie for you and thats how they get you work. thats the only tried true tested way to get work. so even if you dont lie, if you get a agent the agent will lie for you to get you work.

NO NO NO  employers HATE honesty to their very core. they actually love liars.
i used to be honest with employers, it got me nothing, i was honest with the navy, it got me told to bugger off. they hate honesty, they dont see it as a good trait at all, they despise honesty.... likely as if you get employed by them then your honesty is a threat to them as they are often always doing something wrong that you can get them in trouble for with your honesty.

fill in the gaps, with anything, it doesnt matter just close the gaps somehow. they hate gaps in employment too, any gap they rip apart and claim is bad even if you do close the gap but decided to leave like a 4 month gap they will take that and act as if its the worst thing ever and it put them off hiring you. gaps are bad, honesty is bad. with gaps and with honesty you will find it hard to get a job, with no gaps and lies you will be thrown job offers right away.

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.

Hi, thank you SO much for your kind words. I really appreciate it! It’s funny you say that as I was just talking today to my sister about starting a blog to document what I have been through. Anyone who has ever known me always has said I could write a book one day with everything I have endured! I would love to use what I have gone through to help other people not get into the situation I was in and I have always loved writing. I was thinking of buying a laptop this weekend to start writing. Thank you for the encouragement and giving me a sign that perhaps this is where I could start! I am so sorry to hear that you too have been in a similar situation. It is so terrible that so many of us have been missed. Wishing you all the best in your future. 

   Your story reads a great deal like mine. You are articulate and caring. You are a self starter and unafraid of a challenge. You do have a great deal of experience in your personal history.

   It may not be a job your needing...

    If you have disability now or a small income and have a stable enough place to live, you could use the time and space to write your story for the world to hear if you are inclined. Yours is a very valuable voice and your experiences important for others to understand.

   Good Hunting!

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?