Feeling totally lost.

Hey! 
I do not have any advice and there are so many good suggestions and answers here, but nonetheless: I‘d like you to know that you‘re doing a great job. It does not matter whether you have some fancy degree or not. The fact that you got to this point in your life, despite not knowing about and masking a disability for a good portion of it, is freaking impressive. Yes, you‘re not feeling good right now, mainly because the "disability" part is probably much harder to accept than the general traits and while that‘s a shame, because you deserve to be happy, it is absolutely understandable and you should also feel proud for making it through all those terrible things like bullying and bad schools (even though you shouldn‘t have had to endure all of this). 
To cut a long story short: It‘s okay to feel lost and frustrated, but please do not put yourself down. Thanks for being here and sharing your thoughts! I hope you‘ll find someone or something that helps (cause accepting help is also very much okay. Leaning onto your significant other for support is something that not only autistic folks do). Feel free to vent on here any time you feel like it.

Hi Roy, I've just seen this post - as you know, I took a break to move home and I'm just catching up with posts from the last couple of weeks.

I just wanted to reassure you that you're definitely not alone. you and I actually have a lot in common. I don't have a degree, and I went to a terrible school and was bullied. I also had poor handwriting and I still dislike writing - I prefer typing. I rely on my husband (and he also relies on me). I discovered I was on the spectrum about 9 years ago, but although I've learnt a lot and have accepted myself, I still haven't been able to accept that I am "disabled". I think it's maybe due to being older - when we were young people were just expected to get on with life unless they were obviously physically disabled. I don't see the point in therapy as I find it difficult to trust health professionals, and I also dislike talking on the phone. Plus of course we both remember 3-2-1 with Ted Rogers!

It sounds to me like maybe you have got a bit "stuck", and your recent diagnosis has made everything more confusing. Maybe you need a change - I know that change can be difficult, but it's more manageable if you feel in charge of what's happening, so maybe think about what changes would make you feel more content with your life and discuss it with your wife to see what you can do together.

I understand about other people in real life not understanding you - I eventually pretty much gave up with taking to colleagues about it and just used this forum if I wanted to interact with others who understand. It might help to remember that neurotypical people's minds don't work the same way as ours, so it's difficult for them to really imagine what it's like to be autistic.

I am hyperlexic and I do read a lot, but that is mainly novels for my own enjoyment - it's just one of my skills and special interests.  But you also have skills and special interests - we all do, and they vary. Everyone is individual and unique, but in this community we all understand the core issues around being autistic. I hope you feel validated here.

I am glad Roy, that you were able to express your feelings here following diagnosis. Seeing the report, with a full diagnosis in print, is a shock. 

People who aren’t neurodivergent often don’t get it, or they appear to get it, listening and acknowledging what you say, but then they move on and that is that. No mention of it again and no enquiry as to how you are doing, or what it is like for you now/today/this week. Others might say that “we all have to make an effort” and “aren’t you getting through now; so what’s the problem?” At least that is the response I got when disclosing my diagnosis.

I have friends, but I don’t see them that often so most of the time I am on my own. I like being on my own, yet sometimes I feel very lonely and it is difficult to cope. 

You may feel stupid, but clearly you are not, as demonstrated by your intelligent engagement on this site.

Life can be so cruel, so many of us have had long ghastly years at school, so our brains have been programmed to think we are stupid, even if there is evidence that shows we are not. It can take effort through therapy to challenge those thoughts to make new brain connections that reflect who we really are. Incidentally, I left school with 2 ‘O’ levels and 1 CSE. School was a dreadful experience and I didn’t return to education until my late 30s. I felt the most awful waste of space, and still do to some extent, but diagnosis has helped me realise that it’s not my fault as a person. 

You definitely belong here and I value your presence.

I hope you are doing ok today.

This is sad to read Roy as I have found your replies and comments on here really kind and helpful - I think you would make a great friend. Life is hard for so many reasons, but not being acknowledged for something that’s part of you by a friend is harsh. I really hope you can find some calm inside soon. 

Hey Roy

i enjoy reading your posts on here and I’m really sorry you are finding things difficult. I hear you loud and clear and experience much of what you talk about. You have been very kind to me with your words of encouragement and I really appreciate that. 
From everything I hear on here this is part of the journey so hang in there. If you ever need to chat you know where I am.

What is that people say about diagnosis. It gives you permission to be kind to yourself.

You have a lot on. It'll take time.

What would you say to someone else in your position.

Roy, it takes time. It's a process one goes through and likely the later you are diagnosed the more there is to unpick and come to terms with. I experienced what I can only describe as a "diagnosis hangover" which I wasn't aware of at the time but started a couple of months after assessment. It's all too easy to say but please be kind to yourself. The person it matters to most is yourself. With regards to work - and other aspects of life - we are coming from a different starting point to neurotypical people. We process the world - and our heads - fundamentally on a different level.  I'm much younger than you but it's taken several years to get my head around how it personally manifests. 

Thank you Mrs S, 

Most days I manage to wade through life at Knee deep, today just seemed as if I was waist deep. Still lots to process, maybe I need to take it all a bit slower.

Take care.

I completely empathise with this. I am the same.

Dear Roy,

I value you immensely and it hits me hard that you are struggling.

I'm relieved that people are stepping up for you here. I know you and I may seem to be different, but I feel just as alone in the world.  As though it is a spectrum - a spikey profile and different support needs - we are a tribe. We are different from the majority and that difference seems huge to me a lot of the time.

I am so sorry that you are feeling this way. It is a lifetime struggle. Again, I value you immensely. I rely on my O/H completely and can honestly say I would not be able to function without him.

IM if ever you want to. 

Mrs Snooks

Thanks, I forget that it’s still early days, I do mourn the  child I was and get angry with myself as well. I shouldn’t have let myself be manipulated for most of my life. A diagnosis has answered a lot of questions, it has also created a lot as well.  Take care.

Thanks Roy.

Re your current feelings, part of it is probably coming to terms with your diagnosis. I think it was almost two years before I really processed my diagnosis and even now I am at a loss as to a way forward because of the lack of any kind of support.

I have had three shots at private therapy and it was a waste of time. I’m coming to the opinion that the therapy industry is really quite exploitative.

i wish I had answers for you.

My wife has informed me of evening occasions before, “you will be okay, Mary’s husband will be there, you will both have lots to talk about.” I’ve never met this person, I have no prepared script, what are his hobbies and work? Plan B, start an argument and not go. If I had to go I would stand in the corner of the kitchen, observe the party and drink my body weight in beer. Obviously hoping to nod and smile at the correct times. “You can take your coat off.” I didn’t know I was staying this long.

I know what you mean. I have no partner and have lived on my own for 29 years.

I miss having someone but I was not able to fix it. I buried it all. I thought I was not good enough and there was something wrong with me 

I have been so confused for so long, now I think I finally understand. But it is proving very hard to accept it didnt have to be this way.

The idea of just going around someone’s house where there will be a small gathering or party of sorts, not setting a time to leave and just going with the flow is very alien to me. Feeling like you can be somewhere that’s not at home and still feel comfortable being your self is also an alien concept. Also, the yawning is something I do also, it’s not just your average tiredness, it’s more than that it’s actual fatigue and it feels as much mental as it is physical. I often experienced this at work as worked in an office surrounded by people with varying energies. Some people would just talk at me which was soul sucking leading me to feel even more drained and when you can’t get up and walk away when you need to it’s hell. I too struggle to consider myself as disabled because for the most part I function as you may expect anyone else to however the diagnosis of autism is for the most part like missing a link or chain that enables you to connect to others in a more natural way and less of a systematic one. People are not seen as objects however they are an enigma when it comes to their social behaviours in my own opinion. 

Personally,  I’m always happy to see you here, we all have a common bond, but are also totally different. We are a spectrum of neurodivergent people in more ways than one. I am lucky to live with others but still often feel alone, I often feel like a dog living with cats. Always feel you can message me, obviously only if you want to.

Re feeling alone and not belonging here: the reason I have mostly left the forum is because most people here seem to have partners, children, friends etc while I am literally alone in the world and just find it too painful and alienating reading many of the posts here.

I suppose the point I’m making is that there’s a range of people here, with different issues. If we let the forum be owned / dominated by the ones that (appear not to) have significant problems then none of us needing support will feel included or get the help we need here.

I’ve sat many times just wanting to go home, wondering what to say next, hoping I’ve not said something strange, also hoping they didn’t notice me yawning. It’s different if asked a question, small talk just seems to be like pulling teeth, but more painful.

I think we often don’t recognise disability in ourselves, we have been who we are since birth and conditioned to act normally.

I still feel uneasy thinking of myself as having disabilities. I feel I don’t have the right to use the term, I  then feel guilty of not recognising  different disabilities, I suppose I still think of a disability as someone with a physical disability, and so it goes on….

Roy said:

I don’t think I did see disability properly

Me either, I often thought I would see it in myself if I had any. I figured I was just the way I was and it wasn’t going to change because it’s my personality. However somethings we have little control of, I can’t get any dopamine or excitement from social interactions. I am better one on one in a quiet environment that’s because there’s less distraction but even then sometimes I find my mind wandering when the conversation starts to die off and I run out of things to say or energy to force some small talk out. I still use spellcheck a lot, some sites try to force American English which gets a little more confusing!

Seems the diagnosis didn't come at the best time.

Try to view the current period as a transition. It will be over soon enough and you can move and it'll be better.

Then you'll have something you want to do in a different location. I think it will then become easier.

When stressed my thoughts become more disordered and I  lose perspective.

I'd try to focus on getting the cars completed as quick as possible, I am sure you are. Tis is what seems to be holding you up.

Do you actually need to finish them? Can you negotiate with the owners to leave something and they can get it done elsewhere?

(I cut down the drinking on Jan and had a couple of dry months. I try to keep to 14 units on average a week.)