15 months post diagnosis

The health and wellbeing woman who I saw today, from this reed thing, said to me before I left her office, almost like a throwaway comment, ‘don’t be so hard on yourself’. It seemed an innocent enough comment, at the time, but it struck me as profound. 

So this evening I pondered it and realised that this has been a comment made to me several times during my life. And each time someone has said it, it has always struck me as an unusual and random thing to say and never did I ever consider it an actual possibility. That they could actually be talking to me! Or that they could actually think that I’m hard on myself. It never even entered my head that they could be talking about me. 

I would just put it down to one of those weird things some people say. 

But I’ve learned, on my journey of self discovery, post diagnosis, and pre, actually, that just because I can’t see something, it doesn’t mean it’s not there.

So I meditated upon it this evening. I asked where in my life am I hard on myself? 

The answer hit me like a bullet. And with every new piece of self discovery that I find, comes the realisation of the impact it has on my relationship with others as well. 

But what’s even more curious, is, that it’s not a new discovery at all. It’s actually a recurring one, now I think about it, but it’s like every time I discover it anew, it’s like I understand it on an even deeper level. But what’s even more curious. Is the fact that after each time I ‘discovered’ or rediscovered it, no matter how profound I thought the discovery was at the time, I seem to have completely forgotten all about it, after I had made it. Every time. As if it was of no consequence to me at all!!! Is this selective memory? Lol! 

I guess this is the nature of autism that I’m discovering. It’s not that I can’t be self aware, in relation to myself and therefore others, but that, like with everything in my life, with me, it has to be done in stages, for it to be authentic. For it to match my level of processing the world. 

I won’t go into my world and loose you all completely, but I was just wondering if other people have had things said to them, about them, which at the time, they thought were totally preposterous? And later found them to be true? Lol! I’m laughing because if I didn’t laugh at some of them I think I’d cry. 

Destroyed! That’s how I have felt at some of my realisations! 

What I also find amusing, is, that even with this new level of self awareness, I still can’t do anything about it, in that I’m still autistic! 

That’s the part that makes me laugh, for some reason. Probably because I’d cry otherwise! But with every new bit of awareness, I’m finding that I can see solutions to making the best of what I have. In a weird kind of definite but vague kind of way. 

I was told today, at the job centre, that I have been deemed to have limited capacity to work. This means I no longer have to supply sick notes (hurray) and I only have to go into the job centre, 3 times in a year, or something like that. 

My work coach said, I have come a long way and that we have laughed and cried and she said sometimes she cried after I had gone because her heart went out to me (she has a step daughter who’s autistic) ~ she’s been like a mother to me. 

She worked with autistic people for 7 years, prior to this job. She was the first person I had ever had a meltdown in front of who not only knew what was happening to me but knew exactly how to handle it. 

At 51 years old, after just one session, I learned how to handle a meltdown! I had two major meltdowns in one day. One at my autism group and then at the job centre. 

My coach wasn’t around when I got there, but I have a back up person (who I would NEVER be asked to see) but she would be there as somebody who I know and who knows me, just in case. And this was the case.

She acted fast. She intervened the security staff and although she didn’t personally know what to do, she knew to make sure somebody got my coach. 

It was all handled beautifully. Almost like a dream, and nightmare together. But my coach got there and knew exactly what to do and not only did I learn how to handle a meltdown, I don’t seem to even have them anymore. I know I’ve been safely cocooned in my house most of the time, by myself, but I have been going out to places recently. And so far at my new bible study group, I haven’t been told to shut up, although next week, I’m definitely not going to say a word. So meltdowns, or the presence of them, have radically improved to the point of non existence, it seems, with having the right understanding and support. It didn’t happen overnight though, it’s been gradual. 

She’s shared my heartbreaks at the time when I felt rejected by my family, which was the time when I first found this site, after I got my diagnosis. 

She’s been through a lot with me and for most of that time, I was like an intolerably spoilt autistic teenage boy or something. I was a nightmare. On my first visit there she had to get the job centre manager over to convince me and reassure me that they would NEVER try to get me to look for a job or even say that word to me, NOT EVER! I said I’d crawl on my belly like a rat and eat from the sewers before I looked for a job. Not that I’m dramatic or anything! 

So I guess I went in with a bang, but she tamed me. She was invincible. When she had decided on a plan of action, she was on it. 

All the times she referred me for outside help, she only gave them three days before she was on their case. I missed appointments completely. Sometimes it was days before I realised, having had my phone switched off. But never once was my money stopped. 

I know a lot of people don’t have such a smooth ride of it, but I honestly think that my  experience was because I really was at my most vulnerable and the thing that really switched things around, was something that in my thoughts, was nothing spectacular at all. 

One day, she was talking to me (this was after a few sessions) and I thought, this is nonsense, I need to just tell her what’s going through my mind right now or I’m going to explode. 

And when I did, she just stopped dead still and stared at me ~ I suddenly wondered what the hell I had just said ~ and she said, you don’t need a job, you need help. And that was it. She was on it. 

And as always, I’m still not quite sure what it was that I said that made her have that reaction. I just know I remember thinking I’ve got to just be honest with this woman. Nothing she is saying is making any sense to me and I wasn’t saying anything that was on my mind. I wanted to talk about my finger nails!!! So I just let it out. I was talking about this guy, my friend. And I don’t exactly know which part of what I said that alerted her to the fact that I needed help, but I’m glad I said it, whatever it was. 

Because, from then onwards, I’ve been going to see her and all I do is tell her how I’ve been feeling or whatever, and somehow, from that, she works out what help I need. It seems like magic to me. Probably due to me not having that organisation skill or whatever it is, but it honestly seems like pure genius to me. I always think, damn, those nt’s are so clever. Lol. I don’t know how they do it. It’s a total mystery to me. 

I’m always against what ever she suggests. But she always, somehow, very skilfully, manages to steer me to at least giving it a try anyway! And it has always worked out as a success. 

Through putting my trust in her, and her delivering the goods, when I didn’t even know what goods I needed, I have learned so much and it touched me today, when she said that sometimes she used to cry after I left. 

I didn’t tell her how much she freaked me out the last time I saw her when she actually grabbed my hands, over the table, held them and looked at me with a weird look on her face. I wanted to kill her. And I almost regretted not telling her after she said today, I shouldn’t do this but I’m gonna ~ and she only went and blooming hugged me. If only she knew how disgusting and ridiculous and horrific that is to me. But I won’t tell her, because she did touch me, emotionally, today. I’ll just make sure I never put my hands on the table and if she ever looks like she’s gonna make a move to hug me (not that I’d spot it!), I’ll just make a run for it ‍♀️

It has been a very painful journey at times, as I have shared on here, but the more painful it was, the more freedom I seemed to gain. Then the pain became almost welcome. Not in that I searched for it, but in that when it came, I immersed myself in it completely and I would therefore somehow come out of it completely. 

What I realised this evening though, is an important message to me and one that I can no longer ignore. 

It’s true, the lessons we need to learn, keep coming back to us until we learn them. 

If I told you my lesson, in this instance, as it is. You wouldn’t understand me. However, I will say, that although I’m clearly more connected to my so called ‘spiritual’ nature, than my physical nature. They are both really two parts of the same whole. 

And awareness of both parts is necessary, for growth. Because wisdom comes from a balance of both. The spiritual and the physical. And it is wisdom, and not knowledge, that we grow from. 

I always knew this and really knew it. The problem was, pre diagnosis, I didn’t know who I was as a physical being. Jesus said, know thyself and the truth will set you free. 

And a spiritual awareness is not enough to know yourself. To know yourself, you have to know yourself as a physical being as well. 

My journey of trying to be ‘normal’ gave me a very good education into what it was to be a physical being. I learned, through what some would call ‘trials and tribulations’, but what I would call, an amazing adventure and an absolute privilege to see so many sides to the physical nature and human life. 

And I discovered at the end of it all, what I already knew from the very beginning, which is that the physical being, doesn’t exist at all. Not in and of itself anyway. But what I did learn is that it is, however, part of this human experience, this human life, the greater whole, so it cannot be ignored. It is as crucial to the whole as the spiritual aspect is. But it’s most certainly not the cause. Only the effect. 

But anyway, I won’t go there. It’s all a process of baby steps, and baby step by baby step, I’m slowly growing in self awareness and I feel like I’ve been let off the rains for the first time, as I don’t see my work coach until April now. 

I must stay grounded, and keep remembering to take baby steps and to be less hard on myself and remember, it’s all about balance. But most importantly, we can only grow from where we are now, one tiny baby step at a time, with breaks in between if we need them. And nothing is a failure, until we say it is. So I just keep on going. Learning as I go. Bit by bit. And I’m sure glad I’m autistic because it makes for a very interesting life indeed. Complex and yet simple, at the same time

And after all that. I realise that all I really wanted to say is how proud of myself I am. I’ve come a long way, over the past 15 months, since I got my diagnosis. I’ve shared it all with you, so you know how it’s been. 

And I could, if I was that way inclined, say isn’t it a bit sad, that friends and family didn’t stay around long enough to see me come through this period of time and be here to celebrate this victory with me. 

But the truth is, this was my journey, and it was only through me stopping almost all known contact with nt’s of any kind, and immersing myself with autistic people, for the first time in my life. That I learned to love myself and accept myself, from loving you first. 

And they wouldn’t understand my victory. Because it doesn’t show on the outside, in ways that they value and measure themselves against. This is from the inside. Finding out who I actually am and finding a whole world of people, just like me, but each beautifully and uniquely different. 

It’s a world that shares the same difficulties as the nt world, due to a lack of understanding and shared language, but it’s my world. 

It’s a world inside a world which then goes into my world which then grows into the whole world. Baby step by baby step. 

This leg of my life journey started on the 3rd April 2011, when I stepped, wholeheartedly into the lions den. 

That lead me on a journey of a life time which culminated in me getting the diagnosis and being in burnout to the degree that I barely got out of bed for two years, and hardly ever in the first year. 

I know some people think I’ve had it easy, but if you’ve followed my story, you know I haven’t. I guess it’s just my way of looking at it that makes it look easy. 

It might not always be easy, but I’ve been building my house on what the bible calls the rock. The truth that’s within me, and I have stood by that, regardless of appearances, knowing, that everything was exactly as it should be and always is, at any given time. It can’t not be. And looking for examples of why that’s true instead of looking at all the things that are ‘wrong’. 

Because, if things are exactly as they should be, it means they are just perfect. Abundant, prosperous, eternally loving, beautiful and joyful. 

So despite the fact that most of the people in the world are looking for proof of how terrible life is, I was looking for proof of how perfect it is. 

We both found what we were looking for, because the great universal law of life, states, seek and ye shall find, knock and the door will be opened. 

But life never ends. It’s always an education and we are all an equal and vital part of the play. 

Do you trust appearances and what you can taste, touch, feel, smell and hear with your senses, or do you trust what’s inside of you? What do you seek? Because seek, and ye will find. And if you don’t seek, then you’ll get whatever life throws at you. 

I took a chance on what was in me. I totally shed the me, the person I was, prior to diagnosis. That couldn’t have been me, no matter how ‘authentic’ I was, because I didn’t know who I was. 

People who haven’t discovered they’re autistic, can’t possibly know what we go through, post diagnosis, but although our stories differ in outside appearances, we share many of the same experiences that are unique to autistic people. And it’s those similarities that have helped me get through the last 15 months. I never knew how much I needed them. I guess its that old saying, you don’t miss what you’ve never had. But it sure as hell made a huge impact on my life when I found people like me. 

Those connections helped me grow into making connections at my local autism group, and it feels like, for the first time in my life, I’m putting foundations down. 

That’s all I’m doing right now, but I’ve got a sneaky feeling I’ll be working by May. It means a lot of work from now until then, but I’ve designed my life around my life long special interest and the love of my life, so it’s worth working hard for. And I’ve had 2 long years of rest, so I can’t grumble. I’m just so glad I enjoyed every minute of it because when it’s over, and it’s time to get back to work, no matter how much you love your work, it still involves a certain level of discipline that is non existent in total wipe out. And I do love the easy life .

But I’ve got a job to do, so I’ll do it. But if there’s ever a moment of victory, this is it. Not when I get back to work etc, which most people will call the victory. But they don’t see what went into me getting to that point.

The roller coaster journey that getting my diagnosis took me on, totally blindsided me, if that’s the right phrase. I was not expecting it. I must have thought it was going to be all love and roses and I was proved so drastically wrong, that I was drawn, yet again, to suicide. After I got my diagnosis and realised I was human after all and I therefore had a place on this earth  I honestly thought I would never want to commit suicide again. How wrong was I! 

It has had it’s painful parts, there’s no denying it, and most of it is shared on here anyway, but I honestly never looked at it in any other light than that it was enlightening me as to who I was and what my place on this earth is. So I held on to that, and it’s like I held onto the fact that I had a right as a human being to simply exist on this planet, with absolutely no coercion of any kind from anybody else whatsoever and I wasn’t going to move, until I found out who I was. 

I feel so grateful and fortunate, as I’ve said before, to have had a roof over my head and food and warmth and sometimes even some luxuries over these last 15 months. 

If I go back to work in May, it’l be 19 months post diagnosis, which is pretty average and I most certainly will be overjoyed at getting back to work and within that short a space of time. But this time, I know why I’m working. I’m doing what I love and I’m doing it on my terms, to meet my needs, taking one step at a time. Highlighting the truly great aspects of autism and finding ways around the other parts, with the help of other people who I’m actually allowing to help me. I’m being honest with myself, and others and I’m finally getting the help I’ve always needed. 

I didn’t mean to write all this, but I guess it’s probably appropriate as I won’t be on here as often, at least for a while anyways. I’ve got work to do I will, as always, carry you all with me in my heart. Not that I’ve gone yet, or anything, but I seem to have a somewhat dramatic personality and like the flair of the theatrics  . 

I didn’t know I was writing this when I started, but I guess it’s my post 15 month review. And I can honestly say, I’m happy with my progress, I’m happy with where I am and I’m happy to go on taking baby steps. 

Becoming so vulnerable and hopeless was a true blessing to me. Coupled with the diagnosis, it opened up a world I never knew existed, at least, not for me. I was wrong. Sometimes, it’s really good to be wrong. 

I’m still learning, day by day. Although some days, I seem to skip day or two, or more. But I can forgive myself. And in forgiving myself, I can forgive the whole world. Because I have taken, far more than I’ve given, but now on a better footing, I can begin to give more than I take, because I know, that no matter how much I give, I can never outgive the universe. And I feel blessed to be alive. 

Look for the good. Keep focused and one day you’ll be surprised, to find yourself surrounded by it. Completely immersed in it and from that place, you can begin to change things from the inside out. Just as Ghandi taught us, in such a dramatic way. Maybe that’s where I get my flair for dramatics from, my hero’s, such as Ghandi ️peace be with you