Published on 12, July, 2020
Hi Everyone
I am new here and have pulled myself apart about writing anything as everything is so difficult. My diagnosis is recent being in November last year after a 30 month difficult journey following a crisis that completely turned my life upside down. If five years ago I would have been given a trip in to the future to see where I am now, I would have been devastated. Don't get me wrong, life wasn't easy, I didn't function easily in life.
Life has been an experience of being over-exploited in the workplace (as I cannot say no and I am a people pleaser, plus I always feel anxiety that I will get into trouble for doing something wrong or getting caught out!?). Imposter Syndrome! This led to me often doing other people's work for them, doing two roles plus instead of one, and crashing and burning at night and at weekends just to keep going. I have always been an easy target for bullies too, but crumbled and could not stand up for myself, but I could challenge on behalf of other people.
I have, looking back, so wanted to be liked, I did extra things to try and make friends as beyond my comments about the weather as a conversation piece I've always been awkward. I've been on the outside looking in. Avoided social events, and could only talk to people if it was about work. Polite, well mannered, strong values on fairness and justice.i could not understand how people seemed to get through life and do things easily and seem to enjoy life when my sad life was exactly that. Sad, Hypersensitive, Lonely, pre-rehearsing things all the time. My anxiety and depression have been the only constant companions for as long as I can remember and I am heading towards 50 years of age.
I could not understand why people would lie and treat other people badly to their own advantage and it is this situation that finally tore me apart 3.5 years ago in the workplace. I was the only person who challenged and stood by the targeted individual as what was happening in a professional organisation was despicable. It made me question the organisation, my profession and as the bullying then turned to me I resigned after 20 plus years (despite the union telling me to take them on I couldnt).
What happened next was a complete unravelling of me. I totally crumbled. It started my AS Assessment journey by my GP, but also left me with no me. My whole identity had been built around what I did at work and my profession. When I got home from work I didn't function and just slept until time to return to deal with all the work again. When it had gone, I didn't and still don't know who I am as for more than half my life I was my job role with borrowed bits I liked from popular people to try and fit in and well what a saddo.
For the past 3.5 plus years my usual depression and anxiety has ramped up. I barely leave the house. I didn't have confidence before, (imposter syndrome) but I acted ok and rehearsed to get promoted at one point. Oeople didn't realise how much i was paddling under the surface.
I'm hyper-sensitive and hyper-empathic and crowds, noise, light, everything is a struggle. I panic if I see anybody and go into flight mode. I tried to work part time in a completely unrelated job but would cry in the toilets, until a GP told me enough was enough and signed me off work.
I feel a failure. I feel my parents feel I'm a failure as they were proud of my professional career. I just feel broken. I can't pretend anymore. I'm in a million blank pieces and I wish the world would leave me in peace. But we have got to prove I'm unfit to work which is causing more crises.
I cannot genuinely remember the last time I felt any joy. Because I was able to explain how I was feeling and why the mental health team said I wasn't in crisis.
The journey and support out there for adults is truly shocking. If I ever get to a place in the future where I can, I have vowed I want to help adults (because of all the skills I had) to never ever get to a place where I have found myself.
Hi, thank you so much for sharing and I hope things get easier for you and your able to find some peace and enjoyment, hold your loved ones close. You have just so eloquently put my life story into words when I’ve been stumbling around in the dark, for what feels like an eternity.
Hi thanks for your reply. I will reply properly later, I'm not being rude I'm just in a bit of a state at the minute as I have a health assessment today for esa. This is all new to me and I'm not handling it very well.
I too have wondered about being more vulnerable to PTSD. The pandemic has taken its toll on my mental health. I have only been able to continue working because I work from home and have been fearful of being asked to go into the office. Although I go for walks where it is quiet, any need to going anywhere else like the dentist has been a huge challenge. I went out with my husband today and had to use a public toilet first time since the pandemic started. I am now trying to recover from the experience. I don't feel comfortable about being near people.
I hope you are able to meet your goal of going out for a walk with your other half.
Hi, and welcome. What you have described is autism burnout (fatigue), and also withdrawl into yourself. Its a familiar story and been through similar myself - keeping any job going for decades can difficult for autistic people just by turning up each day and trying to do the work, but add in work place stresses and bullying then it can become impossible to work. Its a situation to accept as it is, don't beat yourself up - its not failure to be ill, which is what burnout is, you have to be realistic from now on. Mental health teams tend not to be that aware of autism or have any special training, so what feels like a crisis to you won't be obvious to them.
Be aware of what you are thinking, and if thoughts are racing or flooding, because that will be draining and if you have worries or negative thoughts that can increase anxiety and depression, or stop them reducing. There are different ways to deal with difficult thoughts and worries, such as mindfulness or distracting yourself by doing something instead of just dwelling on thoughts, but also changing how you think using CBT techniques. These things are hard to do and keep doing, but they can make a big difference.
I recommend to two books for autistic people affected by anxiety and depression:
Overcoming Anxiety and Depression on the Autism Spectrum by Lee A Wilkinson (CBT self-help)
A Mindfulness Guide for the Frazzled by Ruby Wax.
Neither will take away the burnout, but they can help you think better and feel better about yourself. You can then start to think about a more autistic-friendly future for yourself, more realistic and manageable. You have a goal to help others so keep focused on that and use it to help heal yourself, as that you need to do that first.
Yes - the idea that all autistic people don’t have empathy is ridiculous - the opposite is true in my experience. Myself and my son have almost painfully high levels of empathy! I also have ptsd after having serious physical illness last year. I found a long stay in hospital almost unbearable (dreadful sensory issues, no privacy, all the people, etc etc etc). It was an absolute nightmare for me and has left me feeling very traumatised. There just isn’t enough (or any!) targeted autism support in mental health services (or understanding in services overall - not just Health services). Soupdragon - you say ‘Please don’t give up’ - yes. Me and my son feel exhausted and it’s hard to keep going, but we keep trying to do our best and try and find solutions to our problems. It’s hard though. There’s so little support. It helps that people on here understand,
I also feel this - I feel sad for the little girl/ teenager I was and how confused I was, and how I struggled and didn’t (at the time) have any idea why. I wish I’d known I was autistic all those years ago. Having said that without services or support (which probably did not exist then - and are still poor now) I would probably still have struggled.
Hello - you’ve expressed this brilliantly and I relate to virtually everything you’ve written here. I am so sorry that you feeling the pain caused by all these issues - issues that are so familiar to me (and to so many autistic people I don’t doubt). You are obviously a good person who cares about fairness and justice - and workplaces can be so toxic in so many ways. My eldest is highly intelligent and has an Oxford degree but he’s found workplaces very difficult as he is also autistic and finds to social aspects and the ‘dog eat dog’ aspects of the workplaces he’s been in highly unpleasant. He has principles and a sense of justice and has struggled with the culture and practices of the jobs he’s had. Myself, my husband and my children (now adults) are all autistic - and we all struggle with social anxiety to varying degrees. We are also - as you are - hyper-empathic and hyper-sensitive - and life is frankly exhausting. Myself and my son are both experiencing burn out at the moment - which is why I came on here. I wanted to reach out to other autistic people and see how other people cope. Because it’s so damn hard sometimes. We feel isolated and it’s a bit of a vicious circle - we withdraw because we are anxious but then we end up being even more anxious. Please don’t feel you’re a failure - you’re autistic and it can make life so difficult and exhausting - you’ve obviously worked really hard to fit in and to be productive and a good person in your workplace - you should feel proud of that. You’re struggling now but it’s not your ‘fault’ - so don’t blame yourself for that. You’ve been doing your absolute best by the sound of it - so give yourself credit for that. If your parents love you then they won’t judge you - they will want to love and support you surely? That’s what any good and caring parent would want to do. If they DON’T feel like that then that’s their failing - not yours! I also am feeling the lack of joy at the moment. Long term anxiety usually results in depression at some point. It will pass though my friend - in time, in the meantime please stop blaming yourself and thinking of yourself as a failure - it will only make you feel worse. Practice some self care and nurturing and give yourself time to heal. What do you enjoy doing? At the moment my son and I are going out walking a lot in the countryside and exploring footpaths all over the place - which is good as we get out into the sunshine etc and it helps us. What helps you to feel better? My son finds music massively helps him. Remember that you’re not alone - most people on this forum can relate to what you’ve described here. These experiences are normal for most autistic people. I’m here for you if you want to talk. You sound like a wonderful person. x
I so strongly relate to so much of what you have written. My experience of mental health services was very similar - I was also told that I was not in crisis because I was able to talk about it. I just don't think the NHS has quite caught up with what autism actually is! I do think that being so frequently misunderstood does lead to trauma and many autistic people are also PTSD sufferers.
I can't tell exactly what profession you were in, but as a teacher what you wrote hugely resonated with me. The stereotype of autism is uncaring and it could not be further from the truth. Work is my life. I teach, I come home and worry about the students, I teach. The pandemic has made my anxiety about going out and 'peopleing' so much worse, so I wonder if that's the same for you?
I love your goal of being able to go for a walk with your partner. When I was going through a really rough patch a few years ago, that was our 'must do' thing every day. I really hope you get there. Please don't give up.
Hi Homebird
Thank you for taking time to reply. At the minute I struggle to leave the house and I panic. It sounds silly but I'm wondering are we more vulnerable to PTSD? I'm actually scared of / wary of people now and have panics if there is a knock at the door or my phone rings. I have no idea of who I am, and my physical health and my mental health are poor. I've been referred for an adhd assessment now. My AS diagnosis made so much sense about me from a child onwards (I was described as a sensitive child, and sad much of the time as social interaction etc was terrible for me), as well as describing my other traits. For years I thought I was odd, weird, unlikeable no matter how hard I tried but now I know it wasn't me or my fault. I'm sad for the little girl, the teenager that was always anxious. I'm sad for the adult who role-played through life waiting to be caught out and built her total self identity around her job. I was too much of a chameleon and too good at Masking. I can't do it anymore. Now my goal is to eventually be able to go out for a walk with my other half.
Welcome and sorry to hear of your situation. You sound like someone who tries to help others and thoughtful towards others.
I am wondering if there are any voluntary sector places that could help you to use your caring skills in a low key way as a start.