processing diagnosis

Since I was told I started really positively.

I was very grateful for my of a Super Power which means I can rationalise pretty well everything to a point of reason and logic. I've not met an NT who can get near me in this regard, so I know I will always function in the top few percent of people and never have many of the worries that other people may have.

Then you realise what you are missing. And then you realise that you don't know what you might be missing.... and this is heartbreaking and very distressing.

I know I am missing empathy. I have many points which prove it. But what do I feel when my 18 month old falls over and bangs his head? I'm distressed that he might have done himself harm and there may be a consequence to his action which could affect his life. But do I feel sympathy? I don't know. If I am honest I doubt it. and then I am distressed that I don't 'love' my son. But I must! Surely! I would do anything for him! But how do I know? How the heck do I find the answer? My Super Power for reason and logic defeats me. It's cruel.

If my kid fell down I would NEVER have empathy or sympathy for him or even mention it, I can’t see the benefit in it.

My son is healthy and would never feel sorry for himself if he hurt himself. Whereas my neices, were all given that weird sympathy thing that lots of parents do and they all get ill from time to time and like lots of people, they love to talk about their illnesses whereas if my son was ever ill, you’d never know because he would never tell you about it, because why would he? He has never developed that habit that lots of people have, of talking about their illnesses and maybe because I didn’t do this with him. And far from feeling distressed about it, I’m utterly delighted. I wouldn’t want him to be one of those people who, when you say hi, how are you ~ they say ok and then tell you about their illness????? WTF?????? People who know me don’t do this to me any more because I’m like, why the f**k are you telling me how your f*****g hernia or how your cancer is or whatever it is they’ve got at any given time! My son hasn’t developed a love of illness and self pity like many other people and I’m glad he hasn’t. 

I wasn't hoping that they would develop a love of illness - but I was rather hoping my sons would develop a love of their Daddy! There are cues from them which show me that they feel differently about me than they do their Mummy. This is the context of the point.

My cancer is fine by the way - got the all clear again at the last follow up 

Thanks Paul - even though you just made me cry! But in a good way

Yes, I'm the same, and I don't necessarily have to resonate with somebody else's experience or whatever but just hearing other people's experience, really helps me and it helps me to see outside of my rigid thinking. At least I now know I have rigid thinking! I spent more than 50 years not even knowing I had it! And hearing about the experiences of other autistic people, in general, somehow enriches my life and makes me feel part of something bigger that's tangible and real on the earthly plane and it gives me that much needed feedback that nt's get on a daily basis and that we spend most of our lives not getting. A little thing that I identify with or something someone says or how they say it will make me smile and it will make my day - it can stay with me all day, filling and refilling my heart with love, joy and compassion and feeling part of my people. It's like my nourishment. Part of my daily bread.

Yeah sure. It's still trial and error and who knows, I could be wrong about some of them, but I feel happy enough just knowing I have these feelings and that over time, I will be able to recognise the important ones, the ones that will prevent future burnouts etc.

The first one I learned, when I first came to this site following my diagnosis, was that when I was feeling suicidal, it was because I was experiencing an emotion of upset about something that is close to my heart. For example, I went to tell my family about my diagnosis and they weren't interested. By the time I had got home (it's about a 15 minute walk), I was suicidal but I never made the connection between what I had just experienced with my family and being upset. I didn't even know I was upset. I just knew I was suicidal but didn't know why. But by talking about it on here, I learned that I was upset by my families reaction and the reasons why I would be upset etc.

There was a lot of this upset around that time so I was able to observe myself. For example, I would go for a walk and after 10 minutes or so, I would be about to go back home, but instead, I just stood still and asked myself why? And I realised, I had been thinking about my sister or whatever it was and I was feeling upset, but because I didn't recognise I was upset, I just thought I want to go home and didn't know why. Once I realized that, I took a few more moments then started back on my walk and it would change everything, I would feel good again. Little things like this kept happening so I was able to see when I was upset. Not always and maybe it will always take a little while for me to click on that I'm feeling upset but by observing my change in behaviour, such as wanting to sleep, I can ask what am I thinking about and if it is something that is upsetting, then I can see I'm upset and I change my thoughts or listen to a meditation or work on my thoughts or whatever I need to do. But it's stopping the build up of upset in me. 

The same with anxiety. I noticed I was doing anything but my work and so thought I was anxious about that, although I didn't know why I would be? However, I now think that the anxiety is not to do with anxiety about my course work but the fact that I'm doing so much all at once, as well as still learning what works for me etc. So this has shown me that although I'm doing really well with all the changes etc, I simply must take days out where I do nothing but stay in bed or at least not get washed and dressed and I need to make eating very quick and simple on those days, so I am working on this with my support worker. And I keep reminding myself that I may not always need as much rest, but when I feel I do, after I've questioned myself on it, if it's rest I need then I'm taking it because if not, then it will be like invisible stress building up in my body and mind. 

I like the fact that I'm always happy and I don't want to change that. I just don't want to allow the invisible stress and upset etc to build up in my body, so I utilize a number of tools to make sure this doesn't happen. And over time, just like learning to drive a car, my new habits will become like second nature and because I've built flexibility into the routines, I will have my routines but with a greater amount of freedom. I will use them to give me freedom rather than just keep me functioning. 

I couldn't do any of the above by myself. I need the support of somebody who understands autism and can guide me. My worker today said she's going to apply for 2 hour weekly sessions because she said she has recognized that I need to blurt my week out to her and she learns a lot from that then we need separate time to work on our tasks. 

My first support worker, who knew very little about autism, recognized that I need a break from everything after three weeks and suggested I create a work pattern where I work three weeks on and one week off then three months on and at least a month off. And this is turning out to be so true. I have started to recognise this myself. I'm on week four of my course and I don't want anything to do with it this week but I recognize why, so I'm just taking the time off and I'll catch up next week. 

It's like I'm getting all sorts of information from all angles. For example, my experiment with noise cancelling head phones is going very well and they're proving helpful and I'm finding out when I'm best to wear them and when not. I'm finding that I do my praying/meditating best when I am out walking, it's like it's easier for me to keep bringing my attention back to what ever it is I'm meditating on or whatever. I'm finding out what times of day I am best to meditate and another really surprising thing I found out recently was that when I play loud music through my headphones, I suddenly want to move and to move into yoga poses!!! I wasn't expecting that! I live virtually in silence all the time, I don't have a television and  rarely play music but my son bought me one of those alexa things so I was playing with music and every time I did, i went into some yoga poses. So after years of not being able to get my yoga practice back, I now have a way to do that! It's weird how I'm learning stuff as well. It's like one of my support workers will say something that means virtually nothing to me, or so I think, but when I ponder it, I find that it does teach me something but not what the person was intending but their ultimate goal is reached, just in a weird round about way! I'm finding I have a weird learning style and that it's not in-congruent with normal teaching, meaning I can still learn but I need to use the material in a different way. If that makes sense?

I've probably got loads more examples as I'm in some kind of learning avalanche at the minute! No wonder I get exhausted!

Thank you - I appreciate you taking the time to write that. It is a really useful insight for me to hear the example of someone else.

Also, I think it should be stated that you've done really well to 'hang in there'. That wouldn't have been easy and you deserve a lot of credit for facing down those challenges.

Yes, and I want to thank you, while I remember, for describing your work pattern because it reflects mine and I can relax now, knowing that I'm not procrastinating etc - I didn't think I was, I just didn't have it as clear in my head as I do now, after reading your example. So, thanks for that, it was really helpful.

My biggest challenge was staying in one place. I hated it. My son had been to several schools and lived in several places before he started his school in the area we live now, when he was 6 and he didn't want to move again. He was a home boy and I was on this mad search to understand who I was etc and what I was doing here and that took movement. It's like I literally have to move to stimulate my mind or something and that filtered into moving homes, from one place to another. I realise as well now, that I always referred to my son as another human and not really as a child. It turned out ok and things are what they are but I think I would have liked to have had more of a mother child bond and treated him more like a child. And I also didn't think I could love somebody else at the same time so I thought I could never have more children and I could never be in a relationship (I ended it with his father) because I couldn't do that thing of separating my time between two people. I dedicated my life to being the best parent I could for my son and decided I would do that until he was 16, but at 16, I realized he was still a bit young so at 18 I left.

I didn't like him going to school at all really, I just wanted him to hang out and learn with me. I don't like to be restricted by anybody else's rules or routines and I don't really respond too well to authority but thankfully my son enjoyed school, he had a lot of friends and learned a lot about friendships and about life and because he is so honest, if he did get in trouble he would admit it and if he didn't think he had done anything, they would believe him because he wasn't a kid who would lie, so we never had any  problems with the school. I suppose it was all encompassing because I didn't know how else to do it.

Yes, and I want to thank you, while I remember, for describing your work pattern because it reflects mine and I can relax now, knowing that I'm not procrastinating etc - I didn't think I was, I just didn't have it as clear in my head as I do now, after reading your example. So, thanks for that, it was really helpful.

My biggest challenge was staying in one place. I hated it. My son had been to several schools and lived in several places before he started his school in the area we live now, when he was 6 and he didn't want to move again. He was a home boy and I was on this mad search to understand who I was etc and what I was doing here and that took movement. It's like I literally have to move to stimulate my mind or something and that filtered into moving homes, from one place to another. I realise as well now, that I always referred to my son as another human and not really as a child. It turned out ok and things are what they are but I think I would have liked to have had more of a mother child bond and treated him more like a child. And I also didn't think I could love somebody else at the same time so I thought I could never have more children and I could never be in a relationship (I ended it with his father) because I couldn't do that thing of separating my time between two people. I dedicated my life to being the best parent I could for my son and decided I would do that until he was 16, but at 16, I realized he was still a bit young so at 18 I left.

I didn't like him going to school at all really, I just wanted him to hang out and learn with me. I don't like to be restricted by anybody else's rules or routines and I don't really respond too well to authority but thankfully my son enjoyed school, he had a lot of friends and learned a lot about friendships and about life and because he is so honest, if he did get in trouble he would admit it and if he didn't think he had done anything, they would believe him because he wasn't a kid who would lie, so we never had any  problems with the school. I suppose it was all encompassing because I didn't know how else to do it.

Thanks Paul - even though you just made me cry! But in a good way

Yes, I'm the same, and I don't necessarily have to resonate with somebody else's experience or whatever but just hearing other people's experience, really helps me and it helps me to see outside of my rigid thinking. At least I now know I have rigid thinking! I spent more than 50 years not even knowing I had it! And hearing about the experiences of other autistic people, in general, somehow enriches my life and makes me feel part of something bigger that's tangible and real on the earthly plane and it gives me that much needed feedback that nt's get on a daily basis and that we spend most of our lives not getting. A little thing that I identify with or something someone says or how they say it will make me smile and it will make my day - it can stay with me all day, filling and refilling my heart with love, joy and compassion and feeling part of my people. It's like my nourishment. Part of my daily bread.

Thank you - I appreciate you taking the time to write that. It is a really useful insight for me to hear the example of someone else.

Also, I think it should be stated that you've done really well to 'hang in there'. That wouldn't have been easy and you deserve a lot of credit for facing down those challenges.