Can anyone give me some advice please?

Autism_at_40

Haha yes.

It's funny, people have said weird things about me at work too.  I got asked if I was a white witch once, I have no idea where it came from AT ALL.   I think when you're a little bit different people seem to think it has to be something, but when you give them that something that's real, they can't accept it.

Your work sounds like a right nightmare, when stuff happens in jobs I've been in I've just had to leave.  That's probably why I've had 20 jobs.  That colleague sounds awful too.

It's funny about the DVLA, I mean for a start you hadn't been diagnosed at that point, so they couldn't even do that even if it was something you weren't allowed to drive with!  I did look it up though, it's on the list, but I guess if you don't feel like it effects your driving then you're ok (I still drive).

I know everyone can say it in their own way and how they want to describe it, but I don't like the phrase 'have Autism' it's like you have a cold or something that can be treated.  I prefer to say I AM Autistic, because I am. LOL.

It's funny cos on my Health Assessment for UC, they refused to put Autism on the list and they kept putting 'Mental Health Problem'  I kept asking them what they were referring to but never got an answer.. I tried to tell them that Autism IS NOT a mental health problem, (neither is stress).

the manager's best friend had told the manager that his wife once worked with an autistic person and they were a liability, wanted everything a certain way, threw fits all the time, disrupted the entire workplace and had rights meaning they couldn't be got rid of. In truth it was just the realisation of something of which that manager warned me in my first week there - 'If I don't want you here you won't be here'.

That is exactly the words of someone who doesn't know much about Autism, but at the same time I get it.  I mean I have wanted things to be a certain way, I probably come across as disruptive too, I dunno.  I just ended up masking the fits because I knew I couldn't do anything about it.

Surely an employer can't FORCE you to take an assessment?! I'm shocked!!  Couldn't you have shown them the letter you got? (I can't remember if I got a letter to say I was on the list).  Also, surely they can't fire you for that???  Can you not get some help and sue them for wrongful dismissal??? I mean it's one thing to sack you for being Autistic (which they can't!), but before you even have the diagnosis! I'm shocked.  I know you probably don't want to with everything that has gone on, but sometimes you have to fight for what's right! (I do anyway, even if it takes me a lot of time).

I don't remember having 2 assessments.  I just did the quiz and sent that in and then got on the waiting list as far as I remember.

Other people just upset my world.

Yeah, I know that one haha.

I'm completely different because I have enjoyed the work do's, I don't know why really, I never fit in.  I do like to drink though because it somehow makes my thoughts a lot clearer and where I normally feel stuck, I seem to be able to open up a bit.  I find it easier to communicate too. And for some reason I can handle noise when I'm drinking but not when I'm not. 

I've got a lot better with my food, but there are still things that I would need to get amended, so I tend to only get the easy stuff that I know I would be ok with, not that I go out for meals these days anyway, or even that much before.

I don't know the film you mentioned.

Oh wow, yeah, I've been the one who's had the reputation too..  My old boss used to tell people to be wary of me, I never understood why.

Well, I'm not really sure who the real me is, I think I need to unmask first.  Although yeah, I could say things like I'm kind, creative, love to read, but I think I have 2 sides anyway, but I'm ok with that.

It's taken me ages to write this...

Autism_at_40

Before I answer today's messages, I want to address something from yesterday's.. As you know what it's like when you think over and over about things that have been said and could've been replied to in a different or better way.

You said:

The trouble is, I can't show my true self to anyone anymore (I daren't)

and then I asked who your true self was and you said:

The real me? Happy, nature-loving, kind hearted, quiet, interested in lots of things, creative, musical, practical, logical, helpful if I can be.

I honestly don't see what part of that you feel you can't share with people because you daren't, I would say that all those are positive attributes aren't they????

I think most Autistic people have a lot of 'struggles' as you put it (I mean you watched the video!), I am also sensitive to the senses.  I struggle to concentrate, I have brain fog and fatigue easily.. so there are a few of mine!

 'You CAN work, in the right supportive environment with the right people around you'. That's so true.

I agree that it is possible, but for me, I have a load of other issues at the moment which means I can't work.  Plus, I have got to the stage where I don't really want to see anyone, so give me a job where I don't have to see or speak to anyone, requires very little brain function and I only have to do it an hour a day, that's where I am right now!

To be honest the HGV debacle was a while ago now - the reason they gave for firing me was that my 'relationship with the company had irretrievably broken down', which was news to me and was just something THEY decided was going to happen so they engineered it.

I honestly don't think they can just do that... I have worked in enough companies to know that there is a process, you have to have warnings and unless you do something that is considered gross misconduct, you can't just be sacked like that.  I think companies that don't have proper HR departments will try and get away with anything.

I respect what you say about 'having autism' and I apologise if you find my language at all off putting;

I didn't want it to come across like that.  What I merely meant was that saying 'having' makes it sound like a disease or something that can be got rid of, whereas if you say 'I am Autistic' it becomes a part of you, which it is, we were born with it, our brains work differently to everyone else's, so therefore it is a part of who we are.  I don't know if this is the right way to compare it, or whether or not you believe it (I'm on the fence - no real opinion), but it's like people who are gay, they would say they are born that way and would definitely not say 'I have gay', they ARE gay.    And with regards to you saying it's not ALL you, well neither is being gay.  Does that make sense?

Well, I've just looked at a few of the emails I got when I first requested an assessment and none of them say anything about the Mental Health department.  Even the NHS website says Autism isn't an illness (https://www.nhs.uk/conditions/autism/what-is-autism/).

My last job, I got really upset in my first week because I was overwhelmed by the amount of meeting requests I had received, which was daunting to me, I don't like meetings.  I had literally only just met my boss (It was in the pandemic times where we were only in for training and then working from home), I told her I am Autistic and she made no comment about that at all, never asked me anything about it - nothing.  I was just reassured that she had been upset in her first week too!

Yeah, there are more disruptive people in workplaces.. and I feel I have always done more than expected of me..

Sincere apologies to the Rest of the World as we seem to have monopolised this thread....

It was my thread I started it, so it's ok

Hoping the 'cancer patient' reference isn't offensive to anyone

I got what you meant, I'm sure anyone reading this will also get it too.

Autism_at_40

Well, that's not exactly what you said though.  You said you didn't dare be yourself, and then when I asked you what your true self was you listed things that were positive.  Now you are saying how you think people perceive you.  Are you saying then that your true self is someone who is brutally honest and that's it?

I'm brutally honest a lot of the time too, it doesn't put people off, in fact, I have had friends in the past who have said that they like it because it means they know exactly where they stand with me.  It's easier for them, because with most people you have to play a game of 'were they really telling me the truth' or 'is there some hidden meaning in what they have said'.  I prefer to be completely honest regardless and I don't think that people judge me negatively based on it.

Well, my last boss may not have said anything, but at the same time, I had I think maybe 2 months of diagnosis under my belt, so I probably wouldn't have known what to say to her anyway.   But you're right in everything you say, I think there should be more awareness.

I probably used to over-compensate.  I mean, every job I have been in, I have got so incredibly stressed out about it, that I have needed to drink my way to get through it, then at the end of the job, take at least 2 weeks to recover from it.  I honestly can't do that anymore.  The pressure of fitting into the work place and doing things that make me feel uncomfortable and anxious and stressed have led to me putting my mental health on the back burner just to have a job.  My sister said to me last year "You need to be an adult and get a job".  It's got nothing to do with being an adult, I just refuse to put my own health before the things society dictates I 'should' be doing, like working.  I know my limits, even if no-one else does and I refuse to subject myself to all that constantly, especially if I don't feel like I can cope with it right now.

I have been suffering from burnout for a significant amount of time and it is really hard to get over, especially when other things have been happening at the same time (2 moves, sorting a new flat etc).  I refuse now to get a job where I have to mask how I feel about everything, it just isn't sustainable for me.  I literally cannot drink anymore to get through it and I shouldn't have to either.

I find that I end up asking more questions than my employer wants me to because I feel like everything has to be REALLY clear before I can do a good job.  I think a lot of people just ask maybe a couple of questions and then just run with whatever they THINK is the right thing to do in a job.  I prefer to know exactly what I'm expected to do and do it properly.

I think bosses in the past have placated me.  I will bring something to their attention, say this isn't right, etc, and they will just brush me off without actually seeming like they are doing it and because I know they are just placating me, this is even worse for my mental health.  They haven't even got the balls to say, no, this is how it is get on with it.

I definitely do things in way more detail than other people.  I think I am more inclined to take the time to do a proper job than to just bodge it and hope it works out, like a lot of people do.  Yes, it should be a bonus for bosses and those that actually understand Autism actively seek out Autistic people to employ, I have heard of a few companies that do, because they know our worth and can probably adapt things to ensure that we are comfortable in what we are doing, knowing that we will do a good job.

Yeah, I have always felt like an outsider and not in the loop of knowing what is going on.

Well, my other health issues (I did write out a really long in detail reply, but decided it was unnecessary!) are:
* Brain fog
* poor concentration
* memory issues
* fatigue (like you said there are a number of reasons why I have fatigue (Autism, covid, vitamin deficiencies, plus I had glandular fever when I was 20, which makes you susceptible to ME/CFS)
* Autism related social anxiety to the point where I haven't been out in a week..

I actually suffered from really bad stomach pains last year, when all this started.  They went away and I didn't feel anything for a year, then the other week, I had them again in the middle of the night as usual, I waited for them to go, it was ok.  Then the following week (last Saturday), it happened again, but this time during the day and they just wouldn't go away.  It started at 7am, by 4pm, I was starting to wonder what it could be.  So I went on 111, answered all their questions and it said something like 'you need to seek medical attention as soon as possible - Today'.  Which freaked me out.  I had noone to talk to and ask about it.

SO, I went through and did the whole out of hours thing, had a call with a doctor, couldn't answer his questions properly, so he told me to go to hospital.  This was 9pm - I went, I saw a nurse, then another nurse did an ECG, which surprised me as that was heart, by I think it was 1.30am, I got to see a doctor, who turned round to me and said 'what do you want from me?' - I was a little bit shocked by this, but I said I wanted to know what the cause was or if there is something seriously wrong.  In my opinion doctors tend to treat the symptoms and not necessarily find out the cause.

Then he started asking me if I had taken anything, which immediately made me feel incredibly stupid, because I hadn't (my sister the nurse had always come home from work slating the people who went in without taking paracetamol first).  The other doctor never asked me that.  I generally don't take any pharmaceuticals anyway, I had tried natural remedies and they didn't work.

I told him I felt stupid for coming and I shouldn't have come - he reassured me that he didn't mean to make me feel that way.  I went away with a prescription for the medication I had been given the previous year that I never took and never filled it because I haven't left the flat since.

I spent a week getting over that trip to the hospital, I felt stupid for going in the first place, then I felt stupid for paying for my parking (I had had to go back in to ask where to pay too - which caused me anxiety) when 2 cars in front of me got let out without even attempting to pay, I also felt stupid because someone in the waiting room seemed to be looking at me as though they knew who I was and I recognised them but had no idea who they were and wasn't in the right frame of mind to find out, so I didn't want to see anyone at all.  I bet a lot of people wouldn't understand how a trip to hospital like that puts so much stress and anxiety onto an Autistic person and that it actually takes time to recover from.

My PIP assessment was only 1-2 hours long and it took me 2 days to recover from it!

It's funny, because I had the help of an Autism charity when I was in Cardiff, help with my PIP application.  The support worker I had, recently did a statement to help me get the UC LCWRA tribunal appeal going and she said 2 things that really stuck out to me, that I had no idea about...

1. I overshare personal information - see above lol
2.  Autism can get worse as you get older - I think this is so true of me, because I feel like more things get to me now, especially as I am less inclined to mask now.

I don't feel like I could work because it is mentally draining, everything that goes through my head, I just can't cope.  Plus I don't have much confidence in myself.

I worked from 16-39 with a covid break and have suffered the consequences of that... not doing it anymore...

Autism_at_40

OK here goes..

I like wearing hats and clothes other people wouldn't wear

OK, do it, own it.  I will always remember something that happened to me about 15 years ago.  I worked in a hotel and we all went out for dinner somewhere, I went in Jeans and a t-shirt, one of my colleagues came in a 50s dress, one of those puffy out ones if that makes sense.  I said to her that I felt incredibly under dressed and she said to me "It's whatever you feel comfortable in" - obviously she felt very comfortable in wearing a 50s dress, she obviously liked them and didn't care what other people thought.  Maybe you should be like that with the things you want to wear.  Although if you are talking about wearing things in the workplace, there are obviously going to be things that are and are not suitable for work.

I like singing things other people wouldn't (like some classical and opera)

At work? In front of other people? At home?  If you're singing at home you can sing whatever you want.  If at work, then it might not be appropriate to sing anyway, around other people - if they are your friends then they should accept you the way you are, so should family.

sometimes I listen to the same thing over and over

Typical Autistic trait, I do too.  I watch the same TV shows, the same films, etc.  I don't see how this could bother other people?

I get really hyper (and apparently quite loud) when I'm really happy

That's also probably a typical Autistic trait.  I can understand if it would be a problem at work.  I know we have talked a lot about people at work, so I don't know if you are referring to the workplace or with friends and family.  I think that we all need to understand that there are certain things that are never going to be appropriate for the workplace, whether that's someone who is Autistic or not.

If it's friends and family who don't like you being hyper then they aren't being supportive of who you are.  I have to admit, when I was working at the hotel I mentioned earlier, when I was doing an early shift (probable a late-early), I barely got any sleep, which meant that my mask dropped quite a lot.  I would sing and have mini hyper outbursts and people laughed, but I never felt like they were laughing AT me in a negative way, just laughing at me being a bit different.

I talk a million miles an hour sometimes and sometimes I'm almost mute (I don't even get it myself!),

Yeah, i think that is also a typical Autistic trait.  We talk a lot about the things that interest us, but then when something isn't interesting, we just go silent and in my case, I just kind of zone out I think, uninterested.  Again, I don't think this bothers me, I just try to be considerate in the workplace of others, friends and family should be understanding.

all my interests are things other people around me don't like

Well, again, this doesn't really matter if it's work colleagues, they don't have to like the same things as you.  Family should accept the things you like even if they are different to what they believe you should be into, friends I would've thought would be the same.  Find friends who do enjoy the same things as you, or friends that have 1 or 2 interests, and other friends who like other interests.

I like Harry Potter, some would say I'm obsessed with it.  My sister said it was very childish, but apparently, that's also an Autistic thing, being interested in things that other people think is childish.  I really don't care what people think of my likes and dislikes, they are mine.  If I don't feel like people understand, I probably won't mention it, to avoid the comments, if I want to talk to people about it, I can look for like-minded people on the internet to talk to about things.

I like peace and quiet and other people are too noisy.

Me too, another Autistic trait.  But this is where it gets interesting, because I believe that this is one of the triggers for me in the workplace, and this is the type of thing I would hope that an employer would be able to accommodate a change to enable me to be able to work and not get disturbed.  So for example, I would like to think that I would be able to work in a quieter part of an office or in an office on my own or something.  I think for Autistic people, this should be an allowance made, even if it isn't common.

With friends and family, you have the right to limit exposure to other people, I know I do.  Like I said in my last post, I haven't left the flat in over a week because I literally don't want to see another human being and I just want to be alone.  I was supposed to go on a walk with other Autistic people last Wednesday, but I couldn't face it, didn't go and the person organising (also Autistic) totally understood.  The right people will completely understand and not make you feel bad about it.

I can get over-enthusiastic about details on subjects I know and nobody's interested

Again, I think this is also typical Autistic behaviour.  I think again, you just have to, as they say, 'know your audience', find like-minded people you can be over-enthusiastic about the things you are interested in and f**k everyone else.  There will be someone who is interested in the same things, I am sure.

I've got a ridiculous laugh, I'm not pretty, people say they think I've had a sex change and I find alot of people really dumb and boring and don't hide it very well.

Well, that's very self-deprecating! You should love yourself completely (I know it's hard - I am still trying to work that one out), regardless of how other people see you.  I often think I am fat and ugly, but until you accept yourself, noone else will either.  I don't think that makes sense, but I know what I'm trying to say.  

Plus the harmful mean comments are just uncalled for.  Someone once told me that if anyone says something nasty or horrible to you, you should say 'wow, that was so inappropriate, you must be so embarrassed' - turns it back on them and hopefully, they might realise how unkind they are being.

I also find people dumb and boring, must be another Autistic thing.  You have the right to walk away from people who don't interest you, I don't believe in being polite, in fact I wasn't brought up to be polite.  A lot of people don't believe me, but I was brought up to be honest (I know my Autism takes that to the extreme!), but saying things just because it's polite has never been something I was taught to do.

So being me isn't something I feel free to be around other people, it causes problems.

OK, I get it.  But I just think that you have to find a balance in the workplace, as I've said certain things may not be appropriate there anyway, with friends and family they should accept you as you are.  You just need to find some people to connect with that share the same interests and stuff, build up your confidence in yourself a bit.  I also think that reading the book I mentioned would help.  (If you do read it, we could set up a separate thread to discuss each chapter or something if you're interested?).

Yes, it's tough, people don't understand.  I don't think I could even do a split shift at the moment.  I'm up for about 6 hours a day at the moment.

I'd hope for better from a sibling, pretty low of her. And she's a nurse?! Where's the bedside manner?!

Well, she knows best.. she's a nurse, has a degree, has worked with Autistic people, so she knows far more about Autism than I do, you know the person actually living with it.  If she had actually studied it, she would know how different each Autistic person is and that the spectrum is very vast.. Anyway, she's not just a nurse, she's a Nurse Practitioner, but in my opinion, she's also a psychopathic narcissist so....

I know from experience that if you lurch straight into something else from a burnout it doesn't work out anyway, you just crash again and give yourself a whole new bad experience - it's just confidence-knocking and reputation-destroying, it doesn't do anyone any favours.

Exactly, although I hadn't thought about it like it not working out.  Unfortunately, I was already in burnout when she kicked me out (with a week's notice - so good of her), so I then had to move and then look for somewhere else and move there, it was stress on top of stress on top of stress.  I've had this place for 4 months and I've still not fully unpacked.. 

I was genuinely like the 'Johnny Five' robot in the film going 'INPUT!' and trying to soak up everything just for fun. Another trait that just flags up 'weirdo!' to other people before you've even got the job...

I'm too nervous and anxious in job interviews to be like that.  I think if they were laughing at you, they wouldn't have answered the questions and would've got back to the point of the interview, right?

The lady who was running the walk I mentioned (she works for a local charity peer support for Autism), she said that the reason our Autism gets worse as we get older is all to do with hormones.. oh the joy of being a woman.

I think in the past I probably would've just ignored all the other health problems and kept going, but damaging my mental health at the same time, that's why I'm not doing it this time.  Me first, thank you.

And the support worker who wrote the thing about oversharing also said that it makes me vulnerable as you said.  Thankfully, I don't think anything too bad has happened.  I am very careful with my personal information (obviously more careful than my sister who has had her identity stolen twice!), expect when someone came to my door the other week and said they were police and asked my name and date of birth, it was only after that I thought I shouldn't have given it to them.  I thought about contacting the police to see if they were genuine, but I never ended up doing it.

One thing I HAVE learned is that only YOU really know yourself, so it's not for other people to make judgement on what you should be doing

EXACTLY!!!!

I think you're right about the honesty too.  We probably and naively think that people are just like us, but they aren't.  I get really annoyed though when people I see at work barely do anything and don't ever get told off, especially when I am the one sat there doing overtime trying to get everything done.

I've always offered to do extra too, I've took on loads extra, I got to the point though, where I thought it wasn't really fair, I should be getting paid extra for doing all this extra stuff.  Most people would just get what they need to done and just relax for the rest of the shift.  I think maybe you should do that instead of offering to do more.  You're probably like me though and can't stand to be sat bored.

So your sister may well think you should do alot more, but she's not living your life, and if she had to walk a day in your shoes she wouldn't cope with it either. 

I think because she does suffer a bit with depression she thinks that makes her qualified to tell me what I should be doing.  Every time I would say something her response was 'BUT I GO TO WORK!' - but you're not me and you're not dealing with everything that I am - end of.  Not that I ever said that to her, because if the conversation wasn't about her, she wasn't interested.  Pointless communicating really.

I'll look up the Ted Talk, but given my lack of concentration, I might not be able to watch it for a while.

I'm increasingly, with age, inclined to say 'You do you and I'll do me'. Other people have no concept of what it's like to live in our worlds and it's hard for us to communicate it. I'm also getting more likely to say, 'Actually, no - that's going to cause me untold distress so you're not pushing me into it, I don't care what you think'. Don't you ever let them pressure you into making your life harder than it already is ❤

Yes, exactly.. There is actually a book by Sarah Knight called You Do You.  She also wrote The Life Changing Magic of not giving a f**k, I do like her bluntness, might be another book you could read.

The doctor I saw said it sounded like stomach irritation or something, I forget his words.  He did say Alcohol makes it worse, but the first time I had it this year, I hadn't drunk for weeks, so it's definitely not the CAUSE of it.  I thought it was just stress related, but then when I was really stressed at the end of the year I never got it and I thought my stress was easing up.

I also got a prescription to take lanzasrople or something, but I've not been out to get it filled.  I don't really want to take it anyway.

Well, that's not very nice of whoever told that person not to waste time.  I think it helped for me to have said that 111 doctor told me to go in.  They can't really say anything then.  Plus, they wanted to rule out heart problems.  I got tested for pancreatitis too, which is the only thing I thought it could be, but thankfully that was negative.

'I'm autistic'.
'Yeah, but you're high-functioning, right? That's not really autistic'.

An Autistic person on Autistic Dating site said that to me and I told him that I didn't agree with that language either.  It feels almost like you're putting yourself on a pedestal, like, you're better than other Autistic people.  But to me, the stereotypical boy rocking back and forth in their seat unable to speak isn't any less Autistic than me, I just mask the rocking, and fail miserably at the communicating part.  I am no better or worse than they are!

My 'friend' actually said that to me too, she said she wanted me to meet someone she knew, to show me that he was MORE AUTISTIC than me, I just thought it was incredibly insulting and goes back to the fact that the person they deem as 'more Autistic' is just probably more able to SHOW how things make them feel, than we are.  

Do you not think I want to scream at the top of my lungs when someone does something I don't like, or that I don't want to run into a quiet corner when things get too loud?  We are not that different, just able to mask the feelings.. in my opinion..

Yeah, I hated school too, I left as soon as I could at 16.

I think you hit the nail on the head.  I mean I am not sitting in my flat not wanting to go out, to get attention, there's literally noone who would give it me anyway - I'm doing it for my own peace.  Same with a lot of other things too.. 

Now THAT's an essay.. good luck.....

Strawberry1

@Autism_at_40 and @EffinMuppet , apologies for not responding before now . Things been hectic at home . Feeling a bit low . Sorry.  Take care of yourselves 🙏 

MarieBarl

Hi @Autism_at_40

You have done amazingly well dealing with all this.

It can take a very long time after receiving a diagnosis of any kind to pick your way through the effect it has on your life, your personality and your mental health. It doesn't matter what the diagnosis is - it's still part of you as a whole.

Autism is such a huge beast. It's influences and effects can be both frightening and amazing. The more we know the more we find out we really don't know. 

I have been struggling for a year to cope with changes in my life,  but I found that writing an information piece on one of the unspoken conditions it can cause helped me more than anything else. It has also helped others who didn't know it even had a name get help with theirs. 

I hope setting all this out has helped you work through yours. It was enlightening and personal and I found it quite an emotional read.

I admire your determinatoon and self knowledge.

Strawberry1

Thanks for your support @EffinMuppet . Please take care of yourself 🙏 

MarieBarl

EffinMuppet said:

I went to a job interview once and ran over my half hour slot because I'm fascinated by other people's jobs and couldn't stop quizzing the interviewer about how everything there worked and who made the decisions on what and why and what things were made of.

I don't think I'm autistic. I was shocked by the number of traits on the video that I do have, though. I watched it through the first  time because I have several people in my life who are and I thought I might get some kind of understanding which might help when things get difficult. Even if its just to know when not to push my help on them.

Then I watched it because there were too many oh lord that's me moments.

But your comment about being interviewed struck a strong note.

I once got a job because I had interviewed the interviewer. I asked so many questions he got us a second pot of coffee. I was in that job a long long time. 

(And I truly hate socks. Especially those with the seam that goes around your toes. I have always thought that was just me. Having to wear compression has been a trial.)

MarieBarl

EffinMuppet said:

Yeah, having to wear compression socks when you have an aversion to tight socks? That sucks...

I wanted to say you have no idea, except you actually do. 

I had so many tears and bad moods trying to find something else to help. The nurses at the clinic on the whole just did not understand it. 

Your poor  mum. I really feel for her. 

My great nephew (who is autistic) is fantastic at maths. I am actually good but he is amazing. 

Its as if nature tries to hand out a gift to make up for the problems that can arise.

MarieBarl

@EffinMuppet I will hope that maybe you just haven't found it yet. You take very good care of yourself.

Autism_at_40

OK, after a few stressful days I'm back...

@EffinMuppet
Yes, I do feel better for staying in, it really helped me get over everything.  I actually went out yesterday for the first time in nearly 2 weeks.

Yes, tiredness does make everyone cranky and so you'd think there was some understanding around it.  I feel like I have more than just the Autism that makes me fatigued though, as per previous messages.  I also just found out that I have a lot of the symptoms of Dementia, which is a little unsettling.

 I do so hate other people...

I'm right with you there.. I did think I was going to shut myself off from people, even on here, but I have changed me mind after reading a novel that made me realise that you can't shut yourself off from everyone just because of the people who have treated you badly in the past.  Just maybe be a little more cautious.

I think you need to just not let people get to you as much as they do, I know it's hard but it's not doing you much good.

Regarding 'childish' things, I think they can be therapy,

I totally agree, I think Autistics more than others need something to take them away from the world that we live in.  I really need escapism ALOT and things like this can really help.  Harry Potter is such a big world too.  I mean I loved the films first, that's like a good 25 hours or so, then there's the books, that's a lot more and you can go visit places in the UK and go to the tour and now they are making a TV series, very exciting

 Alot of people say adults have decided to call being happy, playful and enthusiastic 'CHILDISH' 

That's actually what my mum used to say.  She also said Christmas was for children too, I disagree.

Oh your sister's barbed comment of 'But I go to work'! Ten out of ten for sarcasm!

I don't think she was being sarcastic at all.  I believe by that comment (she said it on more than a few occasions) is because she has mental health problems and she 'still goes to work', that even though I am suffering, I should still go to work too.  That's how I took it anyway.

Sorry if that's harsh, she's your sister, but I do believe sarcasm is the lowest form of wit and sly comments I see as cowardice

I don't really think about harshness, in any case, even though she is my sister I no longer have a relationship with her.

I actually don't think sarcasm is the lowest form of wit, I actually like it.  Although sometimes I don't always get it.  I don't think sly comments are the same as sarcasm, in my opinion.

I find THAT childish, it's what kids do in the playground. You know what they say, you can't choose your family...

It's funny you should say about her being childish, I remember telling a work colleague about her the previous time I had lived with her and she actually asked me if she was like 18 or something (she was like 34 at the time), she does tend to have a lot of childish behaviour.  She did make a lot of snide comments the night she kicked me out, I just felt like they were completely unnecessary.  I think she just likes to think she is better than everyone else.

Do you find your autism changes, like sometimes you could almost believe you're NOT autistic, yet some days you're crippled by it?

No, I think that my Autism is evident every day.  Starting with fatigue, inability to make day-to-day decisions, not being able to leave the flat, when I do it drains the life out of me.. I don't ever feel like I am NOT Autistic.

Often when people are nasty I can't speak. I sometimes want to but it's like my lips are sewn together and my muscles won't work to create a facial expression or sound.

I can relate to that, this has happened to me in the past.  I only ever think of a good response after the fact, after I have had plenty of time to think about something.  This is why I am no good in arguments, like with my sister, I was pretty much mute when she was shouting at me.

Just because YOU can write these wonderful, well-worded and interesting essays it doesn't mean you're only a BIT autistic so it doesn't matter and you should just 'make more of an effort' and go to work! 

Thanks for the compliment   I'm definitely not 'a bit' Autistic - I wouldn't have got the enhanced rate PIP if I was.

There was a second-in-charge management job going and he wanted me to do it. He said, 'You're more than capable' and I said, 'Yes, I know ON PAPER I am, but I don't want it, it'll be stressful and I won't be able to do it'. 

This reminds me of a time when I was really desperate for a job, I had no money and really needed something, anything, I went to McDonald's and the interviewer kept asking me to go for a manager position, I said I didn't want a manager position and he ended up turning me down completely!  I suppose it's cheaper to employ 16-18 year olds to do the basic job!

Two years later I was still running the whole show, stressed out, extra hours, all the responsibility, no pay, undermined by all the staff because they didn't have to respect me as I had no position, and I said I wouldn't do it anymore. 

That takes the mickey and I definitely wouldn't have been able to stand it for that long.  Although having said that, the job I had at the hotel was not exactly the same thing, but when I took it on, it was described to me as an administrator job with some finance responsibilities.  When I got the job description it said Associate Manager, Admin & Finance.  I questioned it and the boss said it was just a fancy title.  But then, as it got busier I was told I had to start doing Duty Management shifts, which meant managing the staff, taking me away from my actual workload.  The boss said I would just have to fit 5 days work into 3!  No extra pay of course.  Then I ended up having to do 5 DM shifts and had no actual time to do my work, which also increased because the hotel got busier.  I was so frazzled and ended up working a ton of extra hours for no extra pay.  Not only that, but out of all the managers, i was the least paid and did the most work!  I think we are generally taken advantage of and it needs to stop.  I don't think I will ever let an employer take advantage of me like that again.

It's always ME who's the person of bad character when it doesn't work out, even if I already asked not to do it and told them it wouldn't work

That was the same for me too.  I ended up getting ill actually, I went off sick and even went back in to work to do the wages because noone else knew how to do it, but never got any thanks for it.  I ended up having an operation and was off for 3 months.  When I went back in, it was like the boss hated me for being off and had given my work to other people, which really annoyed me, it was like I was the person in the wrong.  I ended up not being able to cope with it and when I put my 1 month's notice in, they told me I had to give more notice! Ended up being 8 weeks I think!!

And this is what I think your sister does. So if you get a job and can't turn up for it or meltdown and have to leave or get fired, will she say 'Oh I'm really sorry, I should never have pushed you to do that!' or will it be (to her) more proof that you refuse to grow up? Sometimes I think whatever autistic people do they're going to get criticised...

I know for a FACT that she would never admit she was wrong.  It happened.. when she first came to pick me up she was going on about her own vitamin D levels saying how she hadn't known how she was functioning.  I had vitamin D problems, that got treated, but I obviously still suffered with the fatigue.  Later in the year, I found out what my levels had actually been at, I asked her what hers was, she told me and said why, so I told her what mine was (lower than hers) and she said 'that explains some things then', but CONTINUED to make me feel bad for being fatigued and never showed me any compassion or sympathy, even though the medical facts proved it was real.  That day, I actually cried, I remember because it felt like she had been invalidating me all this time and I finally had some validation.  Not that it made any different to her of course.

I was thinking today why I like communicating with you - I don't, in any form, with anyone else - although we don't know each other. Maybe it's entirely BECAUSE an autistic person behaves in a way I consider polite and respectful. 

Again, thanks for the compliment on how I communicate.  I have to say though, I don't agree that it's because I am Autistic.  I have come across MANY Autistic people who are not in any way the same.  I think for me, it's my life experience, the things I have learnt, I have a very different point of view to most people, which I won't go into, but it has an impact on the way that I communicate with other people.

That does remind me though that my sister would never say please, thank you or sorry, which is something else that used to drive me up the wall.  I think manners are the most basic kindness and it doesn't cost anyone (except maybe a bit of pride) to say them.  If you're late to an appointment, say sorry.  If someone does something nice for you, say thank you regardless of whether you think they are still indebted to you for you letting them stay with you.  If you want them to do something for you, say please.  It's simple really.

And, I find it much easier to communicate with Autistic people, I actually bent my peer support worker's ear off the other day over everything about my sister, I went into the whole rabbit saga.

So thanks, it's been nice to find an interesting, articulate and intelligent person who can converse in a decent way, and I like to hear other people's views because sometimes they give me a different perspective and change my own views and outlook for the better, or give the missing facts for me to make a better judgement. Good skills! You should feel proud of all that you are❤ I think you're a far better person than your sister

You're welcome   And thanks again for the compliment.

Autism_at_40

@Strawberry1 No need to apologise.

@MarieBarl Thanks for the compliment.  Yes, it's helped to set things out.  Always nice to get some confirmation that it's not just me that thinks a certain way, or that things should be different etc.

I have been struggling for a year to cope with changes in my life,  but I found that writing an information piece on one of the unspoken conditions it can cause helped me more than anything else. It has also helped others who didn't know it even had a name get help with theirs.

What do you mean by this?  Do you just write about something that causes you anxiety?  It would help to know exactly what you mean if you don't mind.

 It was enlightening and personal and I found it quite an emotional read.

I admire your determinatoon and self knowledge.

You read the whole thing??  And thanks again

Its as if nature tries to hand out a gift to make up for the problems that can arise.

I'd love to know what my gift it!

Autism_at_40

I found out the other day that my experiences with alcohol (how it clears my brain a bit, I get better sleep, I wake up with more motivation, etc) are actually some of the signs of ADHD.  I had done a test a while ago and was borderline, but I'm not sure I want to go down that rabbit hole of getting a diagnosis, I do not want to be drugged up.

MarieBarl

Autism_at_40 said:

... but I'm not sure I want to go down that rabbit hole of getting a diagnosis, I do not want to be drugged up.

Would you feel better knowing? Sometimes that helps more than anything else we can do or take.

Any treatment plan should take place in discussion with you, but only you know how you feel about it.

Strawberry1

Had some consultations and being assessed for Autism and Adhd . It's been a while since my last chat but I always feel like a burden so I go away too let people have a break from me . Hope everyone is reasonably alright.  Take care of yourselves Please 

L_Volunteer

You are not a burden and you do not have to go away and let people have a break from you @Strawberry1. How have the consultations and assessments been going? I hope you also take care of yourself. We are all here to listen to you and support you 

Jimm_Alumni

@Strawberry1 ADHD can come with a symptom called "rejection dysphoria" where we (I say we because I have ADHD and this is one of my symptoms) have such a fear of being rejected or bothering those around us. It gives a pervasive sense of being a burden to others.

But, you are not a burden. People are willing to help and support you. It took me a long time to open up to others when I needed help, it's not an easy thing to do.

I hope your assessments are soon, my assessment and the subsequent treatment were a real turning point for me. Keep in touch please?

THE_DUDE

@Jimm_Scope this is me all my life. I feel anxious when even sending a text to say hello to someone.  In my head I feel they don't want to be bothered so I just don't bother them. I just wait for them to text or call me.

Jimm_Alumni

@THE_DUDE I definitely struggle with that a lot. And the anxiety gets worse the more time has passed! It's a negative feedback loop

Strawberry1

My response to these posts us extremely late . Thank you to @L_Volunteer and @Jimm_Scope . All your feedback is very important too me so Thank you.  I'm still awaiting for the assessments which in a way is annoying. As soon as I find out I will let you know.