Going to keep this thread now!

I feel so tired. I thought I was feeling sorry for myself but I looked at my calendar and I have had 4 periods in 5 weeks. That's pretty legit, really for a fair reason to be struggling with energy. It's a hoot being nearly 45...

I didn't gamble today.

@freda well done no gambling, particularly when coping with what you are. If you haven't already, please consider speaking to your GP. Also have a look at this menopausesupport.co.uk – Supporting You Through Change

Good luck

Jane, Forum Admin

Said I would post about the appointment I had. I wasn't wasting their time. They said I probably do meet the diagnostic criteria. As I suspected, I'm just on the edge of diagnosable. Perhaps some would say otherwise, that's why I've wondered and no-one has mentioned it before now, in a healthcare setting. They don't tend to, with very mild and subtle.

I'm having an emotional day. I'm sick of focusing on myself all the time but I sometimes feel like it takes all of my energy, processing my thoughts and feelings. Especially if someone reacts in a surprising way, to a joke I share, or something. 

It's like my version of reality is faulty, or something and I feel scared and alone because I don't understand other people. I sent a picture of a hand shaped cookie to two friends - neither of whom are particularly religious - and the caption says "Easter cookies - nailed it" it's jam in the centre of a hand. Supposed to be Jesus's hand. Both were quite shocked and I really was confused. It's not saying it's funny to get a nail through your hand, it's just a funny interpretation of making something seasonal, I thought. Just funny cos it's weird. 

Maybe everyone goes through this and I just struggle more with feeling abnormal.

got myself out to a yoga class tonight and did meditation earlier. proud of myself for getting on with some good stuff

Had the third of my asd assessments today. Feel a bit weird about it, as it seems like I'm just on the threshold, the woman isn't sure.

It's quite nuanced, I think. 

Anyway, I know I can't manage what other people can, even though I do my best, so what does a diagnostic label change?

I am who I am. I definitely have some mental and emotional challenges. I just have to do my best.

still waiting for a result re asd diagnosis 

Just out of interest what will change with the diagnosis, you seem a pretty decent and cool human being.......hope you dont change too much. Anyway its been a while so i read a few more posts from you on this page, and although i may be damned for eternity your quip above reminds me of the old `how does Jesus bite his nails` gag. Like i say dont change too much, decent people with a weird sense of humour are few and far between. 

Regards.

Haven't posted for a while. Not going to lie, I haven't been in recovery.

Did get the ASD diagnosis. Only last week, so I am still processing it.

I'm feeling a lot, you know.

The friendship that didn't work out, I gather she has had a diagnosis as well. Makes sense. I'm about to say something extremely honest, now. One of the things we clashed on, was she would be so shaming, if I mentioned I thought someone might be on the spectrum, as an explanation for unusual behaviour. Now... she took offence at that and thought it was a terrible thing to say in polite company. Some people would see it that way and it does indeed fit in with the whole ultra woke ideology that we have to tiptoe around each other because everyone is so fragile.

Personally, I disagree. There's a huge difference between saying you struggle with a behaviour or trait in people and judging that person. Rejecting them because of their diagnosis.

I feel that it's more harmful and so effing confusing to people, to send confusing messages, force yourself to be around them, be annoyed by them but tell them it's not them. Like, some of my autistic traits will be really annoying and difficult for people to be around. I don't expect everyone to enjoy my company. I get it.

I would much rather if I was reaching out to someone, that they were honest and explained that they don't have the capacity to be there at that time, than to avoid me, ignore me, or be exasperated and overwhelmed with me. Worse, hostile and passive aggressive and mean.

So, I made the mistake of being honest around her, because I thought we knew each other well and I'd displayed that I was a decent person and not nasty in intent, at all. I think it's pretty normal, even if not autistic, to be able to be a bit more "real" with close friends. I tried to get her to talk about why she went so hostile whenever I mentioned autism - I'm fairly sure at this point, she just suspected she might be on the spectrum. People suggested to me, that I might be on the spectrum and I was OK with that - because I don't think there's anything wrong with it. That was the thing - if people suggested my feelings might be due to anxiety or depression, I wouldn't be offended. I just did not get why you would hide it from close friends. Her partner was someone who said he wasn't interested in diagnosis, despite often upsetting and hurting people. She said "why does it matter?!" and I explained that intent is a very important component, in dealing with hurtful behaviour. If someone often relates in an unusual way - it's REALLY important to know if they are messing with you intentionally, in a nasty way, or are genuinely unaware.

It also helps people to take care of their own emotional safety. If someone is on the spectrum and that is why they are unintentionally coming off as unkind, they are not good people to talk to when you are feeling very vulnerable. When I first mentioned that I was wary of the "no filter", blunt communication, type of presentation was when I was absolutely on my knees with grief at my husband leaving me. I was just trying to communicate that I didn't have the resilience, at that time, to field tactless bluntness. It's not constructive to be around people I might get angry with more easily because I was in so much pain. It's not a good fit. Not a good combo.

I was actually being extremely transparent about my personality flaws. That I was not able to field very demanding behaviour from anyone, at that time. See, there was this young woman, who was a lovely person. Very good soul. She was open about being on the spectrum. I'd met her in passing, socially and she started commenting on all of my social media posts, asking if she could come along, to the things I was mentioning doing. Like me, I'm sure!, she was extra hard work because she had a lot of needs. She needed - and deserved - to have people be kind and patient with her. I recognised that I could not kindly and politely field that type of intensity, at that point in time. I spoke about how I was struggling as I didn't know how to kindly and respectfully, protect myself from overwhelm.

Literally explicitly expressing concern that I was worried I'd be unkind, in a moment of overwhelm. That I knew that would be hard for her and I didn't want that to happen.

Anyway, that's a very long monologue but it's been good to put it into words. 

I continue to process a lot, this week.

I'm feeling a lot of difficult emotion, this week. Weirdly, I feel so angry but I don't know what I'm angry at/with.

I think it's the realisation of truly how hard I have found "people", all my life. 

What has been coming up a lot, is being ignored and how difficult this is. To me, it's so confusing and makes it difficult to learn, socially.

I think a lot of people don't really pay attention to whether they have responded to people, or not. If I'm met with silence, I am lost in the dark. I don't know if I've annoyed them, if they've just forgotten, if they are trying to distance from me, if they dislike me. If it happens often, I don't trust them. I can't trust them. 

It used to be rarer. It's rampant now. It's really hard work. I don't want to chase after people who don't like me. I'm fine with the idea that a lot of people won't and I'll get on people's wick. Some people get on my wick, so why should it be any different the other way round!

The problem comes when people are very confusing. There's a woman I know, who agreed to a holistic treatment exchange. She keeps mentioning it first - so she's not just feeling awkward, not knowing how to say no to an invitation. She is initiating. I've got really good boundaries with "no's". I don't push and try to persuade people. I said yes, great, here are some dates that are good for me, if they're no good - suggest some more and we'll eventually find a time when good for us both. Then, I won't hear from her at all for months. I don't understand this. Why do that? Like, no reply. No, "I'll have a look and get back to you" Just no response. 

Last time she took ages to respond, I asked if I had done or said anything to upset her and she said no, she would tell me if I had.

Anyway, she called last week and left a voicemail, I called back a couple of minutes later and also got voicemail, so left one - then nothing for days. After a week, I messaged her asking if everything was OK, did she get my voicemail, as I felt a bit confused that I hadn't heard back. I said it doesn't feel good and I'm struggling with it. If something has changed, that's OK but I need to know. Silence is too confusing. After being exasperated with her poor communication a few times in a row, I told her "I am going to struggle to move forward with this dynamic." She called me straight back and said she left another voicemail, that she responded the same day. I'm not sure I believe her.

I don't feel bad for needing to politely say "I've had enough of this" though. Because it has happened repeatedly. If this was the first time, I'd trust the person and presume they'd genuinely forgotten. She genuinely is a nice person but she doesn't seem to have any awareness of how poor she is at responding. The work that goes on for someone like me, when someone is this flaky is exhausting. People are not responsible for my feelings but at the same time, they do need to reciprocate and communicate to a reasonable level. 

Is it just me? If I had been this flaky I would know that the other person is understandably getting sick of this and I need to make an effort to do better, or stop proposing things and let them get on with their life!

You write and describe things so well, you should do it more. Provoking thoughts is a massive skill that you seem to have in abundance. So with my memories and conscience prodded, here are a few of my own thoughts and memories of things that angered or wound me up. I too was angry with everyone and everything, if you jumped in the car with me you would find i thought everyone and every situation were pathetic and deserved derision and often swear words and abuse. Looking back i find i was hating myself and not the world because of what the gambling made me, i think they call it deflecting. Me i got frustrated when people could not do things that i thought they should be able to do, whether that be physical skills, or even people who struggled socially. I have always  struggled to see things from others angles and viewpoints. The gambling once again would make the shutters go up and made me feel my points and views had to be the correct ones and back in the bad old days i would struggle to see people had other thoughts, other worries and other often hidden problems. I know and its apparent i am much more relaxed, tolerant and think things through now that i have been gamble free for a while.

So why the long self indulgent post from me,

You do lots of things that were alien to me, you offer people every chance to interact with you, and always think the best of people, that`s such a good skill to have, but at some point you have to do what makes you feel good and what you are comfortable with. Have the conversations you enjoy and find rewarding. Analyzing and thinking things out is great but sometimes you have to speak your mind and set out the boundaries of what you find comfortable, your friend will hopefully learn from that and also set out their own boundaries and a happy medium can be struck of where the line should be. What i am trying to say is your communication and how you have handled the situation with your friend is really good, something i personally would struggle to do. The only downside is your friends communication and social skills don`t seem to be on a par with your own. You giving every opportunity is not only commendable but a massive act of kindness and shows you truly understand that what often comes out of someones mouth is not always how they are feeling. 

If you feel anger then feel anger, when you feel down feel down, but be proud how you understand and can articulate those emotions as many (me especially) cant or at least couldn`t.

Get into chat sometime and lets have a deep chat, or if needed a laugh and joke............

Aww, lidsy thanks so much for that post. I always appreciate your input - I think you're better at relating, than you give yourself credit for.

I now understand why it's a bit extra hard for me to do people stuff and although I don't have a chip on my shoulder or expect any kind of special effort from anyone, man, do poor communicators make it harder!

I am now thinking of creating a bunch of essays on my experiences, as it feels like I can fit them under some sort of theme or umbrella of ASD. I knew I could write and express well but never quite knew how to channel it, or what to write about.

I've had a really hard day because after all the emotional stuff about dealing with confusing people, the flipping universal credit people left me an ominous but vague message for me about how my circumstances have changed. They provided no context whatsoever, no explanation of what circumstance they are referring to. Very distressing and worrying. I'm not aware of any circumstance changing. At least if they provide a context or some information, you can figure out what they might be misunderstanding and know how to resolve it. 

I've replied in my journal explaining that this has been very distressing and confusing for me. Now I have an ASD diagnosis I can be a bit more blunt without them punishing me, so I added that it often feels as though they are deliberately trying to cause distress. It will get sorted in time but what they don't realise is that coping with holding down even a part-time job is a very difficult thing and I have had to try and regulate and calm myself because of their behaviour because I still need to get a good night's sleep and be up at 7.30 for work.

Absolute bar stewards. Although this will not apply to me - want to make that very clear, it's no mystery why the DWP often seem to push people over the edge, so to speak.

Outside our old job centre, they had writing in the windows that said "making work pay" and someone crossed out work and replaced it with people. Never a truer word.

LOng time since I posted.

I have been processing a lot. Mainly what I think of people, society in general and what place I want to take in it, in the future.

As a late diagnosed autistic person, I feel I have been doing a lot of work. A lot more work than other people and I'm tired. 

So I have learned the rules of what you're meant to do and not meant to do, to fit in. The confusion has come, when other people break those rules, with me. It has felt like other people are allowed to be rude and unkind but when I do it accidentally, in an innocent way, I'm singled out. I don't like it.

I've been welcomed into various social groups but then not treated with the same respect and value as others. I have a tendency to be more honest but I know to be careful with what I say to a person's face. What has really messed with me, is when I've talked amongst friends, honestly, about how I struggle with other people in various ways and the reasons why. Unusual behaviour that has made me feel uncomfortable. I've always noted that it might be due to various factors the other person can't help, like autism or a learning disability. To me, this is showing that I can see that it's not personal but I still need to find a way to navigate these people without being unkind. We don't have a societal method for people who are different. We are either openly rejecting of them, or we pretend we like them, then avoid them - which is very confusing for the other person. I used to hang around with some people like that and it's a horrible feeling. Do you know the worst thing? they were on the spectrum too. I have since found out. So they were publicly shaming people and acting like experts on how to behave. 

I think the pretending to like them approach, is actually quite cruel. They are sent mixed messages but can see that they are being treated differently to the others. So they're forced into this pretend world, this reality that they can see, but no-one else is admitting to. The different person is gaslit and starts to feel they are going mad.

I've always thought the best way is to gently explain to the different person. It's the confusion that is the worst. To take them aside and say "when you said that, I think it hurt that person's feelings because....." 

What has been very distressing for me, is when someone publicly puts me on the spot and confronts me. It's really frightening. I believe it's called "calling someone out" but it's a very abusive behaviour. I suppose it's the cowardly option, for anyone who isn't prepared to speak to the other person one-to-one. It's public shaming.

So, you have either that, or being avoided. Surely we can do better than that.

I think the way things are at the moment, you have to decide whether to try and fit in, or not. I haven't got the energy anymore. 

As for gambling. I have accepted that I find it harder to completely commit to never doing something again. I don't think it's an excuse, it's just the reality for me. I don't seem to have the ability to just completely self-destruct. I do understand why some people have to have zero tolerance in their own lives. I was at a 12 step meeting, where I was the only one admitting to having bought a one pound ticket for a softer form of gambling, yet someone else came in, claiming to be be sober and loads of betting slips fell out of their pocket. I just found it all a bit silly. The meetings seem to be full of two kinds of people, as well. Co-dependents and narcissists. My self-preservation kicked in. There are lovely people, reaching out, offering to be there for others, then those people get overwhelmed because the same support is not offered from the narcs. They are just there to feed on co-dependent's. Most of them are probably still in action, yet they have a captive audience to listen to their woes and look after them. I can see the dynamics playing out.

There's a lot of autism in addiction circles, mind you. At my local meeting, there was a man who often chaired, who genuinely wanted to help people, I think. However, he appeared to have undiagnosed asd. Nothing wrong with that. He did, however, ramble on for about 30 minutes at the start, then after every share, he'd ramble on for another 15 minutes. This is the thing I mean, about not saying anything to people who are different, though. No-one else's needs were being met and the meetings went on for about 3 hours, which few people could manage to sit through, just for the chance to talk for 5 minutes themselves. I'm sure someone could have raised his awareness by simply having a word in his ear, about maybe setting a 5 minute timer, for his reflections after shares, so the meetings didn't become too lengthy. You can do it kindly. 

My nephew was diagnosed young and was taught to ask people if he was boring them, lol. I think that was maybe quite an unskilled prompt to teach a kid, as no-one is going to say "yes" really, are they? It was a start though. In my opinion, being one myself, autistic people can learn ways to navigate social situations. It's more cruel to say nothing and avoid them. I'm sure of it.

I'll share the scenario I was shamed for, actually. I was having problems politely maintaining boundaries with an autistic woman, I'd met socially. I totally got that she deserves to be treated with dignity and respect, like everyone else and I stated that out loud. I was in a very overwhelmed place myself, having just been left by my husband and struggled with social stuff at the best of times. I was talking about how I'd had to block this woman from seeing my social media posts, as she was asking if she could come along, to everything I mentioned doing. I'd met her once and she was fine, nice enough person - but I didn't want to be forced to spend all of my time with her, out of politeness, because I'd end up exasperated and snapping at her. Personally, I understand I might not be everyone's cup of tea and many people won't want to see me most days. I'm sure I'm very annoying to a lot of people. I was sharing this with the group I was with, as I didn't know how best to handle these situations. I was shamed for mentioning her autism - what has that got to do with anything? I'm pretty sure it was why she didn't automatically know her behaviour was very intense and would feel too much, for a lot of people. Personally, I'd want to know. In a measured, diplomatic way, rather than a state of constant bewilderment that people seem to avoid me, but I don't understand why. According to this group of people, you are just supposed to pretend and confuse the other person, as that is better than explaining the truth kindly and having that person in your life, rather than having to avoid them. That you like to do a lot of things alone, or spend time with a mixture of people but you didn't know how to explain that in a way that wouldn't feel hurtful to them. 

I do love my diary for this. It's my opportunity to express myself fully. People don't have to read it, if they are not interested in listening to me. I get the space though, to express myself. I get to be honest about how I see the world. I believe I can trust myself, to be honest in a way that isn't nasty. When I've reflected, the people who have taken exception to my honesty have been personally triggered by it. The person who shamed me for this honesty, was "looking after" the feelings of her partner who was autistic but had chosen to not be open about that. I have always loved getting that insight, when people have spoken honestly, without any malice. It's an opportunity to learn the ways I might not be aware of how other people are feeling around me. 

There's too much "that hurt my feelings, so you must be bad" in society these days. I've always been able to see that other people have feelings and needs and that this is OK. No-one needs to be the bad guy. Autistic people are not the bad guys and nor are the people who struggle with aspects of their behaviour. I'm thinking of starting a blog about high functioning autism and asking other people in that category to share what they would prefer. Solutions, so we are not excluded as much. Rather than this pantomime where no-one is being honest and autistic people remain isolated.

@freda 

Welcome back to the forum and thank you for sharing your experiences with us Freda. Just know you never have to be alone with all this.   

Feel free to contact our 24/7 helpline on 0808 8020 133 or use our live chat if you need further support at any point.  

kind regards, 

Tom (forum admin)