Venting on how working is hard

Thank you so much 

Hi Almond

I see what you are going through and it sounds really tough.

This is something I've asked my therapist about.

Am I always going to feel this way because of my autism?

My therapist gave me hope by telling me that my sadness and depression may be because of unmet needs, once these are seen and supported often things can improve.

It's given me hope.

I hope it helps you too.

I feel for you as I have felt that way for many years, these days not so much though it sometimes recurs.

i haven’t anything to add to the existing comments, just wanted to say you aren’t on your own and to be kind to yourself.

Formal support following an autism diagnosis  is the NAS link Ems  I am used to working around "NICE guidelines" myself too and if you want to see what in a best case scenario local health care in the UK should be supplying there is also this Quality statement 4: Coordination of care and support | Autism | Quality standards | NICE    all the best!

thank you i will definately have a look. where could i find the links?

Hi Almond,

I can definitely identify with feeling like an exhausted alien. Although I’m still employed at the moment, after working - but struggling significantly at times -,for 27 years I have been off all of this year on sick leave due to what has been diagnosed as autistic burnout at the same time as receiving an autism diagnosis. I feel so anxious and depressed most of the time and scared that I won’t ever be well enough to work. 

Sending you lots of love back x

Thank you. I will have to I think.

I receive universal credit limited capability for work and it has definetly been helpful. although the interview/assessment for it was stressful it is worth it if you think that youd be eligble. it was very hard talking about my struggles with the assessor, like many who conduct these interviews they are not autistic specalists. if you are going to go though with it i really do recommend writing as muich as you can on the forms and go into detail and tell the assessor that you struggle with communicating your issues. maybe you could have someone with you during the call to support and speak for you? 

Unknown said:

We are not alone then.

Nope - just like in "The X Files" the truth is out there!  Might be worth finding an autism support worker to help advocate and support you.  

If you're in the UK then the service you receive ought to work to "NICE guidelines"

"Adults receiving care from the autism team should also have a named key worker."

So maybe make sure you're in that system and signed up as receiving care if you're not already - if you are then maybe specifically ask for one?

Quality statement 4: Coordination of care and support | Autism | Quality standards | NICE

Then maybe the key worker will help take the burden of the threat down a bit?

(full reveal here- my experience of trying to get this support is not great, I had to "get better enough" by my own efforts using advice from people on this website and on-line resources and the help of friends and relatives before I was able to push for what I need ---- not ideal but "it is what it is".  Maybe you pushing fro what you need will mean a small win for you and if enough autistic people do then neurotypical society will start to realise we won't be passive in how we are treated anymore...)

Hi Ems I have recently been doing a lot of work around the same feelings - more by luck than judgement perhaps I've dodged the unemployed bit for now however I have been teetering on the edge for a while.  I was tempted to say that I have bee trying to dig myself out of the problem.  This made me reflect a bit that if I'm digging in the wrong direction...  I might be getting deeper if you get my meaning.  Sometimes we need support and help from others.  In the formal context of autism being diagnosed around one being disabled by the condition this is a hard but true fact.  (OK disabled by neurotypical society but that's a whole further topic)  That is some thing that it took me  some getting my head around.  Part of my masking was denying that I needed help and support.  Anyway maybe from what you have written you might need support with 1) recovering from burnout and 2) getting and keeping a job. Might be worth your identifying and lobbying for that maybe?  The NAS have links on the website - I used them to find out what I am entitled to and then to get the wheels in motion.  Best Wishes

We are not alone then.

I, too, have been 1yr unemployed, but I lived off my few savings because I feared the UC people and such. Now, I have no money and am in the process of applying to UC.

They feel like a threat to me, and makes my anxiety sky high.

I deeply suffer having to tell my suffering to them, they are not even specialists, but the other choice is being on the streets.

haha - "the windmills of your mind" Damojo 

We try to post entirely using the lyrics of songs, preferably related? I'd be worn out with all the Googling!

Loving the "La Cage aux Folles"/Gloria Gaynor reference Damojo .   Throw in a bit of "I Will Survive" and there's an anthemic theme buildling...  Hmm there's a topic for a post!

Unknown said:

have tried to cope, but this has left me quite disabled -or so I feel. And even with reasonable work experience and degrees, I feel just drained.

I really relate to this. I started working when I was 17 and once I started university I had 2 part time jobs. I was heavily masked and undiagnosed and even now I’m unsure on how I managed to push through. But I suppose I haven’t as I’m now severely burnt out and have been unemployed for a year now and am on disability benefits. I feel since being diagnosed a year ago I feel ‘more autistic’ if that makes sense. I have really struggled with skill regression and burnout. I too feel so drained and lazy and like I don’t deserve to feel tired or exhausted because all I do is stay at home all day and don’t physically do anything - but I am mentally drained and exhausted at the end of every day. I feel guilty and useless. I can’t see myself working in the future at all and that makes me feel like a failure. I know there is more to life than being employed.  

Thanks for your thanks,  blimey - all that sh1t can be tough Mr T .  I know from experience that i is tempting to think when x is sorted all will be OK.  In the meantime... Hope you're getting "small wins" along the way.

Thanks for your kind words and yes life during wartime is a pretty good fit.

My employer  tried to get me to redact major points in my grievance which has been ongoing in the system since March with no end in sight. I guess that will play into my hands when it eventually get to tribunal. Now it seems like it will be listed for December / January time but I suspect more employer shenanigans before then.

They are trying to wear me down but forget that one of my trats is perseverance .

I get the "alien" thing. I look in a mirror and it takes some work to concede that what is looking back at me is human. There is a passing resemblance, I'll grant you, but I don't feel it. I have never felt it.

Recently, in response to burnout and an education in all things Autistic, I've been employing a new tactic: stop trying! I am what I am (to quote some other lyrics) and there is no point in considering myself a failure for not being someone else. If I am being myself and not just a mask, I will always "fail" according to the standards of those around me. So f—ing what?! Why should I be apologising? That's just me—the real me. I need to stop trying to be liked by everyone, or it will kill me.

I still don't feel "human", but only in the sense of not feeling NT. Now I know I really am different and I know why I'm different and I am starting to feel like me, which is a nice change of perspective.

I did manage to work, although some jobs were part time, there were a few periods when I had to leave a job and take a break before starting again, I moved jobs a lot, and it was always challenging. So I understand how you feel. 

Being able to retire last year felt a bit like like winning the lottery, it was such a relief.

Hi Mr T I have been wondering how things were going for you in your legal actions.

Other people have expressed similar sentiments to "waiting is the hardest part" or its "the hope that kills you" - I empathise.

The "dual empathy" situation/problem in action it seems.

I've recently been exploring it as a "triple empathy" situation/problem by adding thinking about how the autistic person empathising with themselves.  

Mr T said:

"I'm not lost, I just don't know where I am"

seems to describe that maybe.

As for Talking Heads songs "Life During Wartime" seems apt.

Anger and enthusiasm feel to me to be both "sides" of the same passion.

My personal experience is that not having an outlet for enthusiasm (e.g. thro' productive employment, literally not being valued by society) can flip things into anger.

I try myself to engage with something that is close to my personal values enthusiastically in order to employ the energy in a productive way whilst waiting for the other path to open up or find away around/through/over the blockage.

It's not "easier in the mind" to start with however experience shows it to be so sometimes.

I reckon that you already do this however from time to time the waves of frustration still batter you as they do me and I suspect others too.

Hang in there Mr T - we all love it when a plan comes together!