New Year’s Eve update

On New Year's Eve morning, after talking to you guys on here, I set off to pick my friend up as planned. When I got there, I remembered what you said Ellie, and when my friend got to the car, I sat there and told her exactly how I felt. I was crying, of course, and my friend reassured me that we didn't have to do anything or go anywhere I didn't want to go.

After getting it all out of my system, I reassured her that I wanted to go and that I'd be fine. And we set off.

With my friend with her eyes and fingers glued to her mobile phone, as usual, my spirits began to lift as we got closer to Whitby. The phone thing is completely normal for my friend. She's undiagnosed/in conscious denial, autistic, and her phone helps her cope in the world. It used to be games. Then 'plenty of fish', POF, for short, and, it seems, it's snap chat now. It suited me perfectly. I could enjoy the scenery, enjoy the drive and talk to my little hearts content. And it doesn't matter what I say, because if I say anything that needs a response, she always gives me the perfect response. I'm not always that nice to her, but somehow, we get each other and she's such a loyal devoted friend, even though we rarely see each other, that I could never deny her my friendship, as hard as friendships are for me.

We arrived at Whitby, in plenty of time to check into the youth hostel, the one next to the abbey. We got the last car parking spot right outside the doors to the youth hostel doorway and we got our keys to the dorm. We then had a lovely leisurely walk into the town.

Neither of us changed. She hadn't even changed her underwear for a day. She didn't have to explain to me why. I understood. We went to a beautiful cafe and she had her favourite cheesecake. I had a delicious pot of tea. Then we made our way, slowly, to the fish restaurant for our reservation.

It was wonderful. My friend had her eyes glued to the phone. I was revelling in the atmosphere. The place was crowded, but it didn't feel like it. People all around, were happy and done up to the nines, in fine clothes and updo's and such. It was wonderful.

I had the best oysters I have ever tasted, to start. Followed by some of the best scallops I have ever had. Followed by the best ever mini fish, chips, peas and scraps. It was delicious and I enjoyed every bite and every moment of it.

I was in my world. my friend was in hers, and everybody else was in theirs. And we were all getting along just fine. I loved it. My friend had straight up fish and chips and nothing else.

Although my friend wanted to do her usual dine and dash, I was taking my time and drinking in every moment.

We finally left and went in to the most gorgeous pub. It had two rip roaring coal fires belting out terrific heat and there were two seats, just waiting for us. So we took our coats, hat, scarf and gloves off and sat down. Wendy of course wanted to leave. Before we even sat down. Her phone was running low on battery and she wouldn't put it on my charger as it would mean putting it out of her sight and reach. Which was not happening.

We met the most gorgeous couple. I think the lady, and possibly the guy, are autistic. I loved them so much. My friend was far too busy wanting to leave, [and almost laughed at the lady at one point] to appreciate this couple. But I appreciated them. I appreciated them so much. I thought of all you guys as well, and about how much you help me, and I was feeling very blessed indeed.

It's hard for me to get a grip on nt reality and these last few months, I think I would have gone crazy without you guys. You showed me that my autism is real. It's hard to tell sometimes for me, because I don't frame myself in the nt world, so it can appear sometimes that I have no grip on reality. But I have always known my former life wasn't 'real', in terms of the nt world view. And since finding this site, you guys have helped me realise that my world is real. My reality is true. It's just different to that of nt's. And my wellbeing officer said to me today, who's to say mine isn't the right one?

And she's right. Just because most people think a certain way, it doesn't mean they're right. They used to think the Earth was flat and that man could never fly!

You guys, my work coach at the job centre, my wellbeing officer, and a few others, are all helping me to see the reality of who I am, who we are. And not only accept that, but celebrate it. I'm not at the stage of celebrating too much yet, but I did celebrate and send a loving wish out to all of us, on New Year's Eve.

After one drink at the pub. Me and my friend took a beautiful walk through the town, back to the youth hostel. I adore the cold weather, and always dress well for it. My friend on the other hand, detests the cold and never dresses correctly for it. And of course, her only concern was getting back to the youth hostel, to charge up her phone. But although the town was alive with such wonderful energy, with lots of people, it wasn't oversubscribed. It was perfect. It had just as many people as it could host, perfectly, and most of the people were either in a pub or in a restaurant, so the streets were fairly empty. It was such a treat, to walk through the streets of that beautiful little old fishing town, on a cold winter evening, looking in the shop windows, feeling as if I was back in the late 1800's. I was in my element.

We got back to the youth hostel at round about 9 pm. We sat in the reception area. Wendy on her phone, with it plugged in. And me, giving Wendy my full attention. We didn't speak much, and although I was talking to you guys in my head, my heart was with my friend and that present moment. My heart was with you guys as well. That's how I could sit there, with my friend, letting her be who she is, while I simply enjoyed the moment.

Just before midnight, I went outside, to have a walk in the church yard, and see if I couldn't see some of the fireworks they were letting off on the beach.

Bonfire night has always been the only 'holiday' I have ever enjoyed. I would sit round the huge fire in my aunties huge garden, after all the family and friends had gone inside, and I would be so happy.

I haven't celebrated a bonfire night for many years. I just haven't managed it, so the thought of seeing a few fireworks made me happy.

As I got to the church, I walked down several steps, until I was looking out over the entire town. It was wonderful. It was all lit up, you could just about hear all the celebrations and after a while the few people who were around, all made their way down into the town.

I was breathing in the beautiful fresh cold air and enjoying the solitude, the quite, with the gentle sounds of laughter and music in the background. And just then, in that perfect moment. The church bells started ringing. It was magical.

I thought of a young medical student, who was in the bedroom opposite me for a while, when we were living at the nurses home when we were working in the Isle of Man. She was a church bell ringer and I was fascinated in how much work goes into it. I had never met a church bell ringer before.

I thought of her, and all the other lovely people I met while I was working over there, in the Isle of Man. And I thought of how fortunate I've been, in many ways. I thought of all of you and how lucky I am to have found you. To have you in my life and to call you my friends, and family. As the bells were playing, the fireworks began, and I'm not just saying this because the evening was so good, but they truly were the most beautiful fireworks I have ever seen and the most perfect ones for the occasion.

There was cheering in the distance, coming from the beach. The bells were ringing right next to me, to my right. Bag pipes played. The fireworks were lasting as long as the bells. I had the most spectacular view over the town and my heart was overflowing with love and affection. For not only me, but for every one of you and for all of us. All of us neurodiverse. All who has ever been and all that ever will be. I had hope and love for all of us. And I thought to myself, this is going to be a good year.

I looked to my right and all of a sudden there was a coppa stood there. He was in only a tshirt and his police vest thing, on his top half. No hat or gloves and not a shiver in sight. My kind of man ;) Did I tell you I love the cold! We had a beautiful moment together as we both enjoyed the view. We were drinking it in and he told me how lucky he was to get to see this view every day. He said he was from Middlesbrough and had been working in Whitby for the last two years. He pointed out his station to me, and the view he enjoys every day, at lunch time. Definitely my kind of guy!

Then he was gone. And I found myself drifting down the steps, towards the town.

I went into the first pub I came to and bought myself a drink. I swear to god, it was like being in a Charles Dicken's novel. I had the most delightful chat with a guy at the bar. Such a joly chap. He told me how he had seen a spectacular firework display in London once, over the river Thames. Then we both wholeheartedly agreed that it wasn't a patch on Whitby, and we toasted the new year and wished each other a good one.

I sat down and enjoyed my drink while I soaked up the moment once more. It was wonderful. I didn't feel out of place at all. I was in my world. They were in theirs, and it was perfect. Then the free grub was brought out. In what looked like their very best crockery. It was exquisite and modern for such a homely, old fashioned little pub. There was so much love in there, amongst the young and the old. It was beautiful. I finished my drink. Went to the loo, and had a beautiful walk back up to the abbey.

I walked through that dark and deliciously cold church yard without a fear in the world. I was slightly afraid, but I said, I know you won't hurt me, if you want to show yourself, I don't mind. I love you and all my family. I love everyone, but that night was dedicated to you, and me (you guys). I love all the others, the nt's, but that night was for us. It was special. Because we're special. Every one of us and I truly value, love, respect and need, each and everyone of you.

You guys got me through that night and it turned out to be truly magical.

It hasn't suddenly made my life magical. Every minute of every day, when I'm not in my own little world, is a struggle. It's so very hard. My 'profile', is one of pathological demand avoidance, and it's severe. It always has been. But despite that, I have achieved so much in my life, while not even knowing what the hell was going on. As soon as I open my eyes in a morning, the horror begins. I have studied, intensely, the nt world and its inhabitants, for 50 years. And I will say, without shame, that I am a world class investigator. Sherlock Holmes, is in my league. So I know a thing or two about them.

But in the last few years. In fact, since November 2012. I have seen another side to nt's. Which culminated in me not only witnessing, but experiencing (as in, I could feel it) the most tender, pure, unadulterated gentle love, I could ever imagine. It was beautiful. I honestly never knew it existed amongst nt's. I never knew that kind of love existed at all. 

People look at me with pity. I don't mind. It's not their fault. To the outside world. I have been abused, neglected, raped, beaten, battered, held hostage at knife point, I've been in prison, been homeless, in and out of the courts for many years, I had my son taken off me, I was violent, I walked the streets at night when I was homeless and slept during the day, because I was scared of getting attacked by someone like the Yorkshire ripper. I was a heroin addict who became mute. I spent many many years alone, doing my absolute best for my baby. I loved him so much. He was my guardian angel. But he was also a child. A person in his own right. He wasn't 'mine'. My job was to love and protect him and do everything within my power, to empower him to be a beautiful human being.

He's a child of this world. But he's a beautiful young man. He's kind and thoughtful, loving and honest. He works hard and plays hard. He gives and he takes. He's surrounded by the most wonderful support network of very loving loyal friends and family. He's loved very much and he loves very much. He's got the most outstanding integrity and I couldn't be more proud. I could write a whole book about him.

But he's an nt, and I'm not. I hope one day, he'll understand me. Although I have experienced his world, I'm not of it, but I'm working on nt's understanding us and visa versa. Because we really can live in the same world, because in reality, we do. And when they realise this too, when that happens, we will all be living in an autistic world :)

NT's look at my life and think they know what they see. They haven't got a clue. None of those things they think they see are true. I was just a little girl, getting through life as best she could. And those things they thought they did to my body or to my 'life', were simply fantasies in their imaginations.

Nobody raped or beat me or locked me away. Like the guy from the German concentration camp said, nobody can take away our freedom.

I was always free, but after 50 years they had me beat.

I surrendered. I couldn't get them to see who I was and I couldn't live in their world.

But that Sunday afternoon, a few weeks back, when I was thinking about  killing myself. I found my way to this site. And by the end of that day. I was laughing. And I understood the reason for my distress that day.

I thought my diagnosis would help my family see that I wasn't this horrible person who dominated and ruined their lives (their words not mine). But it wasn't happening but you guys came in and made me realise. I don't have to live in 'their' world. 'Their' world doesn't exist. How could it?

Because I'm in it and so are you. And if it was 'their' world, we wouldn't be in it, because as much as I witnessed their tender, loving side. I'm certainly not of their world but I am in the world, so that makes the world as much mine as it is theirs. It’s not ‘their’ world, it’s just the world.

I don't have to be bound by their world and I won't be. I will live in the world, which means I will have to have some interaction with them in some way. But it will be on my terms. Not theirs. But I will give them unconditional positive regard. As I do all of us. It's just that I connect with you guys in a way that I don't with them. They think we're in our own little worlds, but the truth is. It's them who are in their own little man made worlds, stealing from what was theirs to begin with and doing whatever they can to hang on to what they steal. It's all a fantasy in their heads. It's not possible to steal that which is already yours. They just tell themselves stories. And believe them.

My name, apparently, a retired vicar told me the other day, means victory.

Well, this New Year's Eve certainly marked a victory for me. I realised, I don't have to live in 'their' world, because their world doesn't exist. Other than in their heads. And I won't get them to see that by talking to them. We speak a different language. We live, in different worlds. Metaphorically speaking. But I can cultivate my world, our world, or rather, build on what we've got here. A support network that is not only wonderful, but essential to our existence. They have their support network. Now there are enough of us with a voice, we can cultivate ours. With the absolute vision of one world. Peace and harmony don't have opposites. It's not a world of duality. Nt's have got a place in the world, like we all have. But it's not 'their' world and I refuse to recognise it. With respect.

I'm not rushing this. I couldn't if I tried. Exhaustion puts paid to that. And that's just perfect. Because I've spent 50 years in the wilderness. Finding my way though 'their' world. And we all know how difficult that is. I don't have to go into detail here. I need this rest. But rest assured. I'm thinking of you all. Often. I just may not always be able to come on here. Which I know you all understand.

Let's see how understanding nt's can be, as I take my much needed rest and take my place in the world and help others, like me, find their place.

Just because the majority think a certain way. It doesn't make them right.

Oh, and I’m thinking now that that coppa in the grave yard could have been a ghost/an angel. It wouldn’t be the first ghost I’ve seen. And I hope it doesn’t sound like I was creating an ‘us’ and ‘them’ mentality, between nd’s and nt’s. It’s just that, that night, felt special, for us. I had been talking to some of you before I went, I was dreading going, I didn’t want to go but I’m so glad I did, and it was talking to you guys that gave me that extra something I needed to get me there. So the whole day and night felt dedicated to us and it helped me start the new year off with love and peace in my heart and hope for the future, for all of us.

It’s going to be a slow process for me and I’m learning how to do the go slow thing as I go along, but my outlook on life is also slowly changing and I like what I’m seeing. I feel like I’m slowly getting back to me and I like what I see. This next year is simply about looking after my body and getting to know me and discovering what my needs are and how to meet those needs so I never have to go through another one of these huge burnouts and I never have to mask again. I believe we all have a place in this world by virtue of us having life, and we all have intrinsic value and a right to live a life that expresses who we are and it’s looking like I’m devoting my life to doing what I can to help us all achieve that aim. Happy New Year everyone, nt’s included, of course :) 

Parents
  • Hi BlueRay

    how beautifully expressed..and here you are having wriggled and been wrung through life’s hoops. You are a very welcome member to this band. Of misfits. We have all had our journeys and been lifted and squished flat in equal measure and it is lovely to have you here and have the opportunity to know you x

  • Thank you Ellie, I appreciate that. When I got to my friends house that day, I sat in the car and heard your voice, and it said, it’s ok, just tell your friend how you feel. I have NEVER done that before, but you said something that made me think twice. I had barely said anything to you about my friend yet you described her to a tea, so when you said it would be ok, she would understand, it switched something in me and as soon as she opened the car door, it all came tumbling out. 

    I wouldn’t say I enjoyed the experience but the results of me having the courage to be honest with her, were beyond anything I could have wished for. You reached into my soul, and hers, and you knew what I needed to do and without question, I did it, and the results were miraculous. 

    I dread to think what would have happened that day if I hadn’t of spoken to you guys. I was imagining car crashes (literally) and all sorts. I didn’t even know if I’d go and had I not gone, it would have been a huge huge mistake. Even before I even got to Whitby, as I got closer and closer, and got close to my beloved nature, I somehow knew I had just had a significant sliding doors moment, but I didn’t still know the significance of it at that point. You’re a god send to me. Thank you. 

Reply
  • Thank you Ellie, I appreciate that. When I got to my friends house that day, I sat in the car and heard your voice, and it said, it’s ok, just tell your friend how you feel. I have NEVER done that before, but you said something that made me think twice. I had barely said anything to you about my friend yet you described her to a tea, so when you said it would be ok, she would understand, it switched something in me and as soon as she opened the car door, it all came tumbling out. 

    I wouldn’t say I enjoyed the experience but the results of me having the courage to be honest with her, were beyond anything I could have wished for. You reached into my soul, and hers, and you knew what I needed to do and without question, I did it, and the results were miraculous. 

    I dread to think what would have happened that day if I hadn’t of spoken to you guys. I was imagining car crashes (literally) and all sorts. I didn’t even know if I’d go and had I not gone, it would have been a huge huge mistake. Even before I even got to Whitby, as I got closer and closer, and got close to my beloved nature, I somehow knew I had just had a significant sliding doors moment, but I didn’t still know the significance of it at that point. You’re a god send to me. Thank you. 

Children
  • The sentence you highlighted "I surrendered. I couldn't get them to see who I was and I couldn't live in their world", is exactly ‘it’.

    The second time I went to Bali, which was in 2016, I went there for a specific reason. I didn’t tell anybody why I was going, I just went.

    When I was ready, I did what I went there to do. I went to see a person I had met only twice, but I knew I had to go back and see him. And on the night in question, he was exactly where I knew he would be and we did exactly what we needed to do.

    We talked, and he gave me one word. He said ‘surrender’.

    After being in AA (Alcoholics Anonymous) for more than 7 years, I thought I knew all about surrender. It’s just about the first thing they teach you in the 12 step program and it’s a constant all the way through. With actual physical tangible steps to take, to help you surrender and to keep surrendering.

    So of course, I was like a bull in a bull fight, who had just been shown the colour red. I was ‘I know all about surrender, rah rah rah’. But my words faded quickly, as I knew, he was right.

    What I discovered after that, was a revelation, I suppose.

    I realised, you can’t ‘learn’ to surrender. Not exactly. That Sunday afternoon, after leaving my parents house, I wanted to die.

    I had had it. There was nothing more I could do. I gave in. I ‘surrendered’. Although I hadn’t consciously realised at that point, that I had surrendered. I was far too overcome with emotions and thoughts. My emotions, like I’m sure, many of you can relate to, are pretty extreme, and very black and white.

    I had thought that my diagnosis, would finally make my family see, that I wasn’t this horrible little heartless brat, who goes around the world doing what the f**k she wants. She’s this tender loving little girl, who’s lost and alone in the big harsh, scary and cruel world that she honestly doesn’t understand. She is just not, of that world.

    But she is loving and kind and generous and friendly and she would stand there, in front of you, wanting nothing more than to tell you that she loves you, and not a sound would come out of her mouth.

    But I honestly thought the diagnosis would change all that. That they would know, without me having to tell them, that I loved them. And they would see, that I’m not this useless, lazy, heartless, selfish ***.

    But it didn’t work out that way. At first, I thought I had accepted it. I had joined a local autism group and I was starting to feel less alone. But a few days after the initial day of rejection, I left my parents house in tears. They didn’t see that. I hid it, as usual.

    I got home and I wanted to die. I didn’t even know why. I honestly didn’t have a clue. But in my sheer desperation to somehow stay alive, even when I didn’t think I had a reason to, I found this site.

    By the end of that day, just a few short hours later. I understood why I had wanted to die. I thought I had ‘come to terms’ and ‘accepted’ my families rejection. I could very easily reason it out, and I was so happy to have found my little autism group, that I allowed myself to believe that I had come to terms with it and accepted it and that it was ok.

    When I went to my parents house that day, nothing out of the ordinary happened, but it triggered the emotions in me and I was unable to contain them. I was so overcome by them that I just wanted to die. I didn’t even have any thoughts in my head at that time.

    You probably saved my life. You made me realise, that my world is real. That I really do have these struggles. But it all happened, after I had surrendered.

    I finally surrendered.

    Ellie, you don’t need somebody, an nt, to tell you that you’re autistic. We know you are. But I also know how important it is, to get that official diagnosis. It’s as if we need that piece of paper, to give us the confidence to finally be who we are. As if we need some kind of permission, from them.

    Once I had surrendered, the whole game changed. It wasn’t just a rock bottom. It was the end. What I feared would happen, if I did this, happened instantly. I immediately lost consciousness of what I had been thinking, only seconds before, and the only thing that stood before me was the black hole of death. And I didn’t even know why.

    Nt’s cannot understand the significance of what getting a formal diagnosis means to us, not in its entirety. A black man, can’t tell a white man, what it’s like to be black. And visa versa.

    For the first time ever, we’ve got an explanation for the way we are. We have been given the key, to unlock, the seemingly, self imposed lonely prisons, that we’ve been living in. When we’re not in our own worlds, that is. This isn’t a label, or a diagnosis, it’s who we are. And even that isn’t true. We are way more than that. We are way more than a diagnosis. Of course we are. You would have to be pretty silly, to think that’s all we are.

    But it is important. Because it gives us, for the first time in our lives, an identity.

    I bet none of us here have ever had one of those. WTF! I never identified, as girl, or teenager, or pretty or smart. I was none of those things. They were just some of the things I did, sometimes.

    Getting the diagnosis, gave me an identity. But we must be careful not to place too much value on it. Because when we do, we fall into their trap. Thinking that we somehow have to prove who we are, just so we can be who we are.

    The new Care Act, the biggest explosion since the start of social care, states, that a diagnosis is no longer necessary, to qualify for health and social care and therefore, we qualify to claim the rights, that are made, for people like us, which entitles us to just and fair treatment and consideration, in this world.

    They, cannot know what it’s like for us. But we know. They, seem to us, to have an invisible language, that they all seem to know, and we don’t. It’s like they know all the rules, and we don’t. We’re just learning them by trial and error, often with disastrous results. But on the other hand. ‘We’ have an invisible language of our own. Look how we flock together and say things to each other that we would never say to anybody else. Even though we edit and stress over what we write, we are obsessive and repetitive, yet we somehow, manage to say what we’re thinking. We have a silent invisible language that we all understand.

    Yes, they hold the power of that piece of paper, but if you get someone who’s good at their job, nt’s can spot an aspie, in ways we would never consider.

    So you can’t fool them. You can’t be ‘too good’. They are not looking for what you think they’re looking for. And sure, some of them will get it wrong. They’re not all good at their jobs.

    And even those who are good at diagnosing an aspie, to whom I am eternally grateful, do not know what it is like for us. But we do. We speak the same language.

    As I said to PrecociousT, I can only offer my experience in the hope it can be of some help to you, in some way.

    For me, I had to surrender. And when I did, I started the slow journey to accepting me. What I surrendered to was me. I let go of the person I was trying to be and it hasn’t been easy, but slowly and surely, with all of your help, I am coming to know who I am. And with that realisation, I have realised, we’re over thinking this.

    We don’t have to ‘prove’ anything. But if we are struggling in any area of our lives, it is because we are struggling with our autism and how it fits into the world. We have reached a point where we can no longer carry on. It’s just not possible. And we are protected by law, to have assistance with those struggles.

    The diagnosis is important on many fronts, but the most important, is that it tells us who we are. And we don’t need a piece of paper to tell us that. We’ve got our invisible language.

    I can’t promise anything, because of the exhaustion and this burnout, the barely existent short term memory etc, but if I can make it, I would go with you to the assessment. But you know, you’ve taken the hardest step. No matter how this pans out, you’ve taken the first step in honouring you, the rest, no matter how ugly or pretty it gets, is always on the way up, because you’ve got your family now, and we hold each other and help each other through it. You’re not alone with this. Whether that be in matters of the heart or of employment etc, we’ve got you. And we don’t have to live in ‘their’ world, that exists in their heads, and we will never get them to see who we are. That’s not possible. They’re just not us. At best, they can understand us to some degree, and some magnificent and inspiring people, nt’s, have managed to build beautiful relationships with nd’s, which is truly heart warming and comforting, and speaks of the loving capacity of human beings, nt’s and nd’s. We might not get them to see us, but we can be us, with or without their permission. This is where it can get messy. Not for everybody. Of course, we’re all different and we’re all in different situations etc, but we’re here for each other. Isn’t that what we’ve always wanted? We’ve already got it. The rest is just part of the play. But we’re no longer acting in their play. We’re playing our own part. Although there is a transition period! Lol! You can do this my friend. You’ve come this far. 

  • Hey BlueRay, this is mutual....I get as much out from talking to you! 

    When I first joined the forum I was trying to connect with other women of a similar age to me to help puzzle out what was going on.... was this just a mid-life crisis, hormonal peri-menopausal thing, or really ASD.  I was just trying to work out where the ASD stared and ended as well as myself.

    Like you I have been one of life's special journeys(!)- from lows of homelessness, estrangement of family and abusive relationships as well as wonderful highs....

    "I surrendered. I couldn't get them to see who I was and I couldn't live in their world."

    As you know, I am looking at seeking a diagnosis but I am really struggling at the moment to find my voice and articulate who I am.... why do I believe I am ASD, how this impacts, etc etc..your ability to articulate yourself so well gives me hope.

    I need to get that hurdle jumped as I will be going through my assessment on my own.  No family (estranged), OH is hoping it will go away as he alluded to at the weekend:

    OH:  "I'm waiting for you to get over the ASD"...

    ELLIE: "Do you want me to go to the doctor and get some pills?" 

    OH: "Oh, can you get pills for it?"

    __

    So....the coming months will be interesting and I am so pleased to know you also.

    Time for that war face!!!! - ND style!!