Published on 12, July, 2020
I am so utterly heartbroken and I don’t know what to do. My eyes are so swollen from crying. I’m crying deep heartfelt sobs. I don’t think I’ve cried this way in a long time and I can’t stop the sobbing.
I just want somebody to tell me it’s ok. That they love me and it’s all going to be ok. That they’re here for me.
I’m so confused as to what to do. I attended my niece’s wedding yesterday. We used to be so close and yet she hasn’t spoken to me for years. She said it’s because I didn’t attend my uncles funeral in 2012 when I was in India. But I spoke to him from India when he was dying, which was incredibly hard for me and he told me not to come back. I wrote him a letter and he was ok with it. And it was a good while after that before I became aware that she no longer speaks to me.
I went to the wedding yesterday because I wanted to be with my family but it was so hard. I had to get ready by myself, putting on make up and getting dressed up so I looked the part, because I knew that was the right thing to do by my family. I had nobody to tell me I looked ok. Nobody to talk to as I was getting ready. And I drove the half hour or so by myself to get to the venue, to walk in by myself, when everybody was sat there in this beautiful setting. I said all the wrong things when I got there but I swear I didn’t say them on purpose just to be rude or insult anybody. I was scared, lonely, incredibly sad that I wasn’t included in any way in any of the preparations. Most of them didn’t even care if I was there or not. How can they not care? I don’t understand it? If I say anything, I get told I’m selfish. If I say weird things because I’m so scared, I get told I’m doing it on purpose. My head was all over the place trying to find one person to just be there for me. I stood with my cousin and I couldn’t help but cry but it at least took the sting out of the situation and enabled me to carry on with the day. Wearing the mask as best I could. I felt so alone and it’s clear I was. Another niece from my sisters husbands side said I looked like a wanderer. Just walking around looking lost and lonely. I was trying to make some sense if it. I need to know where people are all the time and I couldn’t find some of them so I was wandering around by myself just trying to find where they were so I could at least find a piece of stability in my mind. Nobody could see what was going on inside of me and I couldn’t tell anybody because I would be accused of trying to ruin the day. So I kept quiet and kept on trying harder.
My son told me I had to stop being weird. I had to stop saying weird stuff. He said I was pushing everyone away and he didn’t know what to do. He said he has spent his life defending me. Getting beat up by people, which is true, and defending me to the hilt and now it seems like I’m purposely pushing people away. He said I’m not autistic. He has seen autistic people and they bang their heads. He said I’m not autistic and I should go back to doing the work I studied so hard for. To go back to social work where I was earning £40 an hour and was in demand. Why does it have to be about that? I was taking drugs for most of my life. It’s the only way I could cope and I don’t want to take drugs anymore yet they want me to back to how I was?
Last night I thought about heroin for the first time in a long time. When I took heroin, it was like being wrapped in the warmest, softest blanket. As if an angel came down from heaven and wrapped me in their wings and took away all the pain. All the confusion. All the noise in my head and the fear in my heart. All the loneliness and pain. For a few moments, it took it all away.
At the end of the night, another cousin told me to look at my family and ask what is life without them. He said he doesn’t understand. Tell me what autism is. I don’t understand. But they don’t listen. He just said family is life.
Don’t they think I know that. Why did they think I was there? I’m not trying to push people away, I’m trying to bring them closer to me and I don’t know how to do that. I thought the diagnosis would help, but instead, it’s caused an even greater distance between us. They’re all giving up on me. One by one. Some of it is because they don’t understand and they don’t know what to do. But that doesn’t mean I know what to do.
I could go back to social work. I could go back working in the Isle of Man. The place where I was at my best. There’s an opportunity right now, for £46000 per year and a £5000 relocation package, 34 day’s holiday and an 8 year work permit.
This would make my family happy. I love living on the island. I like the security of a job and the regularity of life. It’s easy to work in the Isle of Man because I’m surrounded by nature, my medicine. So if I have a difficult client visit, I step out and I’m in beautiful natural surroundings or I can take myself to the sea and quickly recover from the visit. It’s a good life. The island offers all the things I love about life. Island life suits me. That’s why I also love living in Bali.
I could do all the above and still work on my other dream. To use what I know of metaphysics and raw food/food and optimum health, meditation, relaxation, yoga etc. And it would please my family. Maybe this is the answer. I don’t know. I just don’t know. Maybe it is.
My eyes are so swollen and raw, but I’ve stopped crying and feel more at peace.
Maybe the Isle of Man is the best place for me right now. It could give me a good period of recovery. In a beautiful place, with good friends and lots of the things I love to do and I could save the money I need to grow my own business and I feel sure I could do this along side working. Earlier on in the year when I was offered an independent/temporary post, at £35 per hour and free accommodation, I wasn’t ready for it, but I think I could be now. I know I’m not ready to be launching my own business. That’s far too much for me just now but I think I could use my time when not at work, to work on that in an un pressured way.
I feel so tired. The venue for the wedding was stunning and all the family and some of the other guests stayed at the hotel, in beautiful rooms and suits. It also boasted a beautiful spa. In the end I could have stayed the night. One of the aunties ended up in hospital a couple of days before so there was a spare bed in one of the rooms where another Aunty was staying. So they did try to persuade me to stay but after being there from 1.30 in the afternoon till almost 1.30 in the morning, I had to get home to be alone. I drove home, alone, scared, lonely, heartbroken, in the dark, which I don’t like doing anyway, along dark windy country roads that I wasn’t familiar with and when I got home, I thanked god I’d got home safe and alive and it’s now 2.20 pm the next day and not one person has called or messaged to find out if I got home ok. I could be dead and they wouldn’t even know. That’s how scary the journey home was. I was trying desperately to hold back the avalanche of tears that I’d been holding in all day so I could see as best I could to get home. I had glasses on that are years past my prescription but I don’t have the money to buy new ones. So with all the proceeds of the day, with not being confident at driving in the dark, I still managed to get home in one piece, yet nobody cares.
I know they care to some degree. And I know people have their own lives and I know it’s not all about me and yesterday was to celebrate my niece getting married, but it doesn’t take away how I was feeling and I think I did extremely well to get through the day, yet nobody will see that. They will just see that I could have done better.
My friend’s daughter, who is autistic and 10 years old, sang at the wedding as the bride walked up the Isle, then as she was signing the register and as they walked back down the isle as husband and wife. They then left but came back in the evening for a little while. Her dad is also autistic. The girl was loving the party, even though she could only cope for a short time. At one point we were stood close to the toilets and she wanted to go but she wouldn’t go by herself and even though her mum suggested she go by herself, the girl said no, so her mum went with her. That’s what she does. She supports her daughter. Her dad said he’d take her with him to the men’s, at which the daughter gave him a look that clearly said, no way! They support and love her regardless and after a difficult time in primary/junior school, she’s now doing well at secondary school and she now has fantastic support at school which was often lacking in her previous school. How different life must be when you get that level of support. My friend’s little boy is more ‘severe’, for want of a better word. He has always attended a special school and although he’s come on in leaps and bounds in many ways, my friend said he currently won’t leave the house to go anywhere. My friend said it’s difficult but she said she thinks she loves him even more for it. She knows he doesn’t do it on purpose and she said she did manage to get him to this special play centre place that he likes, even though it’s very expensive and they’re just holding on financially at the moment after having to make one of their staff members redundant, but she said it would have been worth it because it would have given her a bit of a break as well. But they were only there a short while and he wanted to go home. She wasn’t angry with him for that. Not in the least. It simply made her love him even more.
Apart from the work situation, I just want my family to know that I don’t do and say the things I do on purpose, just to be weird and push people away. Things just come out my mouth sometimes. And I’m only just, for the first time in my life, realising that some, and maybe a lot of things I say, could be taken the wrong way by people. Can’t they see that that’s why I need their love, support and understanding. So they can say to people, who want to say things about me, that I didn’t mean it that way, I’m autistic and sometimes say things that other people don’t understand. Why aren’t they supporting me? I don’t understand? And if I help myself, and get a job and start ‘earning’ money again so I can join in on all the Christmas present buying things etc and so I can appear more ‘normal’ again, and I talk about the s**t that they talk about, which I hate, and nothing of what I want to talk about, ever, will I then be accepted and part of the fold again? Is that what I’m supposed to do? I would do almost anything for any of them, I’m sure, but is pretending to be somebody I’m not while suppressing my true self so I’m not even visible, the thing I’m supposed to do? I think that’s what I’m most confused about. When I’m under extreme pressure, like I was, walking into an outdoor area, where everybody was sat waiting for the bride, where I was a few minutes late due to a road closure, I’m going to say things beyond my control. I said something like what are we waiting for, is she (my niece) pretending this is like a church and she’s going to walk down the isle like you would in a church? I was under intense pressure. I had no idea what I was walking into. Everyone was sat there. I couldn’t see anybody I knew. I couldn’t see a spare seat. It was horrendous and I think under the circumstances, I did pretty well, yet of course, I was seen to be behaving very badly. Nobody could see that actually, I was behaving incredibly, amazingly well. I was distraught that I hadn’t been included in any of the preparations. I had a few days or so previously found out about the hen party that I knew nothing about which made me realise that my niece really has stopped talking to me. That was heartbreaking and here I was, having to be at her special day, when she could barely tolerate me and nobody cared if I was there or not and they would rather I not be there if I couldn’t play the part, keep my mouth closed and just pretend I’m having a nice time. I was sat in the beautiful room, surrounded by family and all her friends etc yet I felt so alone and lost and in great emotional turmoil, knowing that I couldn’t breathe a word of how I was feeling because they would all call me selfish and they’d be annoyed at me and it seems that even though I did my absolute best, it still wasn’t enough. Maybe I am just one big ball of selfishness that will never be able to enjoy life or be happy?
My son said can’t you see that you’re pushing everyone away, I said no, I honestly can’t, I honestly don’t know what I’m doing to do that. I reminded him of the time that he was upset and I tried to talk to him about it and he said, can’t you see that I don’t want to talk. I said no, I honestly can’t, I thought people were supposed to talk about things when they’re upset so I was just trying to help. But he wouldn’t listen. He just kept pointing out all the things about me that are my autistic traits and wanting me to stop doing them, telling me I’m not autistic and to stop trying to prove I’m weird and stop pushing people away and be like I used to be. I used to be a drug addict and alcoholic. I’ve come through that and yet they somehow forget all the bad parts of that and want me to go back to how I was, super scale masking just to fit in and be accepted. Even the worst of what I say can always be explained if people took the time to listen.
Blu Ray... just read this 2 days late... so sorry to hear how you are hurting, please accept an e-hug from me! I don't post much but I read a lot and have got a lot out of your input on these forums. Please be kind to yourself and stay clean and sober, heroin is an evil drug and has taken many of my musical heroes away. It does sound like you are at a turning point and Ellie may be spot on about it being your coming out party. I havent been to a wedding in yonks but arranging and MCing both my mum's and dad's funerals were very hard. Particularly mum's as by that point I was convinced both she and Dad were both on the spectrum too and waiting for my own diagnosis to come through, so had all that whizzing around my head whilst dealing with my relatives. Since being diagnosed I have come out to my mums side and mentioned to her sister that I thought she and Dad were on the spectrum too which went down like a lead balloon! Possibly because she's in denial about her own eldest son who is almost certainly aspie and undiagnosed at age 50.Anyway I digress hope you are feeling better than 2 days ago and remember there are people here who care!
BlueRay, so sorry to read about your distress. I would give you a hug if I could. It's hard when people close to you don't understand, I wish I could find the words to help. I hope it helps that you have friends here who can see the goodness in you.
I think everyone masks to some extent at weddings as there's so much pressure and emphasis placed on having the perfect day. Weddings convey an idealized image of the couple and their respective families and the guest numbers are often padded out with distant relations and vague acquaintances to create an impression of social popularity.
(Yes - weddings are hugely stressful).
I feel sad to hear that your family doesn't recognize your challenges and they attach alternate intentions to actions that are a result of your social confusion.
This question did come to my mind to be honest (that he could be on the soectrum) and I didn’t know why. I have always thought that he’s definitely not on the spectrum but a few things were said that day that made me stop and think that he is more like me than I had imagined and I did wonder, but only for a moment. I don’t know why but it was as if I didn’t want to think about that as a possibility, maybe because my mum says I’m obsessed with autism and that I think everybody’s autistic.
Now you have mentioned it though, I think I will ponder that when I go on my walk. I think his girlfriend’s son, who is 5, is definitely on the spectrum and I don’t know the child’s father very well but from what I do know, I would say he’s definitely on the spectrum, and my son’s girlfriend doesn’t see anything at all odd about her son or ex boyfriend, she sees their traits as perfectly normal, so I did think that she definitely attracts our type!
I never thought there was a possibility he was trying to negate that there is a possibility that he’s on the spectrum though but you could be right, I think it’s a possibility anyway. I’m definitely going to ponder that. WoW, that’s a big thing to be pondering! Thank you for your observations.
Quick question re your son...
Is he on the spectrum? Do you think that following your diagnosis that he maybe trying to negate that there is a possibility that he may also be?
In case you didn’t see I liked your comment Lonewarrior, I just wanted to say, thank you, as always, for your continued, loving support ~ I couldn’t do this without you guys.
I can’t believe that even though my eyes are still red and swollen, I’m feeling pretty damn good today. Not in a ‘I’m feeling brilliant’ kind of way, but I feel peaceful and calm and strong in myself and without doubt, if I hadn’t got the tremendous support I did yesterday, I would still be in a heap of a mess today, for sure - under normal circumstances, this kind of upset can go on for months, with me, so although it was a highly charged weekend, I’ve come through it at super speed and I’ve got a lot more than I had before I went, so all in all, it was a huge success for me. Even though I still haven’t had one single message to see if I got home ok!!! That’s not upsetting me so much any more but I honestly can’t get my head around it! I can’t understand how they can see a family member so upset and struggling and not send even a little message to say, are you ok! I guess they were all too busy enjoying the post wedding breakfast together at the very plush hotel/spa venue! Never mind, there’s nowt as queer as folk, as they say!
I think this is just the beginning, I think I probably gained even more from that day and when its all processed (this can take a while), I’ll be able to see all of the benefits. This has definitely never happened in my life before ~ that I’m feeling so calm already after a major emotional hurricane, so things are definitely looking up
️️️thank you DC. That means a lot and you make some good points.
I feel so much better today. My eyes are still a bit sore and swollen but by coming on here yesterday, I was able to snap out of the deep well of sadness and work through it.
Yes, I’ve got a diagnosis which I thought would help to bring me closer to my family. It has definitely done that with regards to my Mum and dad but with my sister and son, it seems to be working in the opposite direction.
However, following my conversation (if you can call it that), with my son, I can at least see that he’s having difficulty coming to terms with the diagnosis and I can understand that and I can give that time. I didn’t contradict or argue back at him when he was going on at me, telling me I’m not autistic etc, I just said, very feebly (as I was holding back tears) that I am autistic and the very things he was saying about me are exactly that. But I let him have his say, which I think really, is all he wanted to do and I’m glad I was able to allow him to do that because regardless of what he said, he was being honest and he was being open and truthful with me and I’m glad he was able to do that. I usually jump in and talk over him so it was good fortune that I was so upset and unable to speak because this is all my son has ever wanted to do. So in that respect, it was a break through ~ and I’ve only just realised that!!!! Thank you DC for helping me to see the jewel in the crown
I wasn’t going to do it, but following your last piece of advice, I’m going to make the phone call and find out more about the job opportunity - it’s not what I thought I was going to be considering but I can at least check it out thank you
Um... Greetings Miss BlueyShiney-Person... I am a "hugger" myself, but I do not Post them (Hugs and Kisses), but I say that you ARE welcome here just like all of us who are 'not NT'...
I sort of read your opening post - it is a LONG thing, for sure, and so I offer what I can...?
You are accused of not knowing what Autism is about, yet you ARE diagnosed...? And so at that, DO tell anyone this in the first place if faced with a confrontation. To belittle or manipulate you is thus supposedly to take advantage of your lack of knowing how to defend or how to cope. (...Imagine if you were in a Wheelchair yet they decided to say that you know nothing about that? It is not right, of course.)
With regards to pushing people away, this is both true and not true, and counts as Autism, in "not always knowing how to (socially) (appropriately) behave", and so this should be the next thing which is said, if challenged...
The main weapon is as if one is ARMED with Autism, and those who are not, cannot challenge correctly without experience of it for themselves. The main Definition of Autism is it being: "characterized by significant difficulties in social interaction and nonverbal communication", and so when such things are tried yet failed, that should be the expounded reason as to why. After that, it is up to others how they deal with it, ignore it, dismiss it or not. If anyone tries to understand, or offers help, it should be clear, and taken into consideration (as you mention of your Son?)...Even if not at the time, when there is too much stress going on, think over what happened later on when not in the stressful situation.
Lastly, you say that you can go to places and relax and recuperate. Please do that, certainly. But I may have posted before that it takes time, even years, before people can associate the "Masking"-You with the "Real"-You, and so if waiting for that can be spent in a relaxing place then I would certainly opt for leaving. Try to keep in touch and consider others as would be preferred as reciprocated. (i.e. - if they give good then maybe reciprocate, if they give bad then be wary and avoid them.)
...But the 'Autism as a Weapon' is very important, I say again. And do not go back to "bad" things - try to find a good thing to substitute for "bad" things, what is important is how you feel and to remain 'keeping your wits about you', as it were.
(P.S. - "So Upset" and "Crying"... Do not focus upon the upset, focus upon the reasons for it...? I myself could never Post upon a Public Website when like that, I know, and so you certainly have strengths which not everyone has. Go forth and use them.)
(X)
I totally agree. I’m not going to make myself a spectacle of a weaping mess, unable to be with my thoughts about my dad and honour him in the best way I can by remembering all the good things about him. It’s utterly insane to think that I could spend the day around all the people, playing the game ~ my dad means more to me than that, more than their criticisms of me.
Yeah, I can’t process it all just yet, but I think I learned a lot of lessons this weekend and gained a lot of strength and I’m not denying my feelings or trying to justify them away, I’m feeling them, and I’ll continue feeling them until they’ve gone. They used to say in AA/NA that feelings won’t kill you and I never understood that, I thought they did. But I’m realising they don’t, or they don’t have to. We can face them, feel them, then let them go and god knows us undiagnosed aspies have come this far, mostly by ourselves, and now we’re finding others like us, so we’re getting stronger, even at our weakest points.
Thank you so much, again, to all of you, for being here for me and giving me exactly what I needed. And I didn’t even have to ask. xxx
Thank you that’s all that I wanted ️
I think you are right. Of course, I would be accused of trying to steal the show, as I’m often accused of, but this time I don’t care, because I know they’re wrong. I did my best and not only that, on reflection, I did extremely well and if that’s not good enough, then there’s not a lot that I can do about that, because hand on heart, I did my best and there is nobody who can give or expect more than that from a person.
I think you hit the nail on the head Eli. It was my coming out party and I did myself proud. I’m not a perfect person, but then nobody is but I am a perfect soul, and that’s who I really am and if they can’t see that, then as my sister said, that is sad, but not for me. I might find emotions hard to recognise and process, but I’m processing them, no matter how painful and lonely and difficult that is, and once I have, I am left with a beautiful soul who did her best for her niece’s wedding and she has nothing to be ashamed of or sad about.
I’m realising, this is my life. I thought I was going to be able to stop these huge emotional tidal waves, but the fact is, this is life. This is how it is. I’m an autistic living in an nt world and the biggest majority of people don’t or won’t or whatever, get us, therefore they are not able to accept us for who we are and that’s sad, but it’s the way it is and living in that sadness won’t change things, but living in my own self will, for me, and the people who care to stick around.
I’ve given up on mine. My only family correspondence is by my dad, formal and via email.
its that gulf of understanding again. Such family events are hugely weighted by emotion and performance requirements. Heightened more so if contact is not regular and so communication can be even more stilted.
I totally get you not going to funerals.. you grieve, you celebrate and remember that persons life. Remembrance is key so attendance shouldn’t be mandatory. It is not lack of respect but a degree of self preservation.
You cant hold your own grief, plus play a role... don’t cause embarrassment dear.. play the game. People grieve and exist in their own way.. why do we have to be forced through someone else’s funnel of how to be..
you got through it, you learnt from it, even though there were some sharp edges
I was thinking to myself last night, that this might well be the end of the family life I have known because I said something to my sister, which made her completely ignore me for the rest of the day. I was telling my cousin that she doesn’t talk to me, which she rarely does anymore and nothing of any meaning, and she hear and in response she said, I do, and I said, well I don’t talk to you and she said, that’s sad and walked away. I didn’t even realise I’d said that. It was a reaction because I didn’t feel able to articulate that I felt she didn’t talk to me anymore and I was devastated about that.
I’m glad you found peace at your uncles funeral. My niece says she stopped talking to me because I didn’t go to my uncles funeral so god knows what they’ll think when I don’t go to my dads! I’ve already made my mind up about that and I’m going to tell him and tell him why, and write him a letter about how grateful to him I am etc. There’s no way I could be at his funeral. I would be in a heap of a mess without any support or anything. It would be hell and I would never be able to say my goodbye to him and honour him. I will be doing that in my own way.
Hugs, they are all I have to offer.
I know. I’m like, why aren’t you talking about something interesting, such as stamp collecting or something, anything! And it’s like, they ask you how you are and what you’ve been up to, without telling you, there are right and wrong answers to these questions! Lol! They don’t tell you they’re trick questions. I just don’t know what is so wrong with just talking. Telling them how you are. Such as, I’m just coming out of an autistic burnout. It’s not depressing. In fact, quite the opposite. Or just telling them how you feel in that moment. Such as, I’m freaking out inside. All I want to do is cry. The noise and the people, moving, all over the place and the lights and the silly fake smiles and hellos then in their clicks they’re slagging the pants off someone they’ve just been hugging! I just don’t get it!
No, they didn’t send the scripted order - shame on them ;) My sister simply sent me a text saying I could come to the wedding if I remember it’s my nieces special day (how the f**k could I not know that!!!! And she knows autistic people are very self absorbed but that I must not do anything to spoil it! It was like saying, you can come, if you have to, but make sure you don’t be yourself and you play the part! She wasn’t direct enough in the part I had to play though.
Psst... maybe it wasn’t a wedding but your “coming out” party
glad you’re being kinder to yourself
x
I hadn’t really thought about how stressful weddings are, in and of themselves, so it was like a double whammy on steroids of anxiety etc for me, so yeah, I’m taking some deep breathes because wow, I did pretty damned amazing, even if it went noticed by just about every person there.
I played my part, I had a nice word with the groom who I really like. He’s such a beautiful, kind, very gentle mild mannered young man, and I’m glad I was open with my cousin who provided a shoulder to cry on, so to speak, and I’m glad I didn’t mask. Although it had a huge emotional impact, I’m realising now, as I come down, that it was actually pretty good in that I didn’t run away and I didn’t mask and I got through it ). No wonder I feel so tired!
I still find it crazy that they would spend so much money and put so much into the wedding day celebrations, work so hard to pay for it all, then just get p****d!
the last wedding I went to was the last time I spoke to my mother and siblings. That was 4 years ago...
The last funeral, that of a dear uncle, had me largely ignored or introduced as a “oh... and this is”
my uncle was a fond admirer of blackbirds, I spent the occasion watching a blackbird hunting for worms out of the crematorium window. I found my own peace and connect that way x
It’s a scripted performance.. did no one send you the running order.. ? My mind screams when superficiality exists... it just wastes people’s time and creates an absence of any meaningful connection. :(