What my diagnosis means to me

Hello there, just joined tonight. recently diagnosed Autistic and while my diagnosis is no surprise to me I don't know if it will be a help to me at all, unless in terms of giving me personally an explanation of how I am and how I have lived my life so far. I always have never felt quite at ease in my own skin or able to fully connect with other people the way most people do.

My main issue now at this time of life [I'm 38] is in terms of relationships. I have a few friends that have stuck with me and to whom I'm attached and very loyal to, and I don't think I could ever be one of those people that has loads of friends or even that needs that many people, I've always had a few friends and that's fine I don't think I could cope emotionally with the stress of having to keep up with so many other people.

What I'm really struggling to come to terms with is that yes I can have friends, after periods in my life when I had none I now do have a few but relationships are a whole other level of difficulty.

I've been recently putting myself back 'out there' onto dating sites and trying and struggling to find someone that is willing to accept me as I am with all my difficulties and issues and personal circumstances and now it seem with this autism diagnosis I have a whole new label, a new hurdle, a new piece of baggage to ask any potential partner to share the burden of.

I don't feel, or think any differently than I did before my diagnosis but it just means that I, as a very upfront and honest person have to be truthful with someone about my condition.

I have had relationships before but they were always a struggle and having been single for four years now it seems it gets even harder as you get older to get people to understand that these difficulties I have with socialising and connecting with people doesn't mean that I am completely unable to function or that I'm not someone who deserves as much as chance as anyone else.

I'm just rambling now I think but just wanted to introduce myself a little and tell my story - I'm sure a lot of people will relate to the difficulties with forming, or even being given a chance with 'normal' people to see the good qualities beyond their perceived notions of what autism is, and means I everyday life, and that is is a spectrum [I have no idea whereabouts I fit on that even].

Can I only even attempt to form a relationship with another fellow autistic person [is there even that many female autistics around at all?].

Is it worth even trying to meet someone 'normal' and hope for the best?

I don't know, just feeling very sort of at sea without a paddle right now.

This is maybe just me venting and letting off steam for my own sake. For that I apologise.

I'm sure this subject has come up multiple times already.

Very apprehensive about even posting here, it's been a long time since I participated on any online forums and don't really know the lay of the land and who everyone here is yet so please be gentle. 

Parents
  • Hi there SC79, I’m a little late to the party but I read this thread with interest. My question to you, would be, what is it about the idea of being in a relationship that appeals to you? I know for me, when I thought I wanted to be in a relationship, what I really thought was that it would finally make me ‘normal’. 

    Since getting my diagnosis last year at the age of 50, I no longer desire to be in a relationship. That’s not to say I’m opposed to them or closed off from the possibility, but I’m more interested in getting to know me and on my journey, if I was to meet somebody, etc etc, then so be it but it’s definitely not my focus. 

    In many ways I’m lucky because I’ve experienced (just coming out of) severe burnout. I have barely left my house for the past 17 months and it’s been so rewarding. 

    Look at your comments. It’s littered with clues as to where you are or are not putting your attention. For example, you say that when you walk into a room, you feel like the lowest person in the room, like you’re an imposter about to be found out, so you keep your head down. Do you think you’re going to attract many people to you that way? And it’s only because you’re comparing yourself against neurotypicals and when we do that, we lose, but only 100% of the time! 

    Don’t judge yourself by your circumstances. If I did that, I would see myself as not very much at all. Living off state benefits, I can’t even reliably feed myself every day, I can’t manage my daily hygiene needs or keep my house clean. I’m exhausted a lot of the time but I’m having breakthrough after breakthrough and I’ve gained an acceptance of myself when I didn’t even know what that meant when I first heard about the concept. I’ve now got a specialist one to one autism worker, it’s a nation wide thing (I think but not sure), with autism plus, and I’m learning slowly day by day, how to look after myself. My business plans are coming to fruition, slowly, but they’re not my current priority. My current priority is learning how to look after myself and learning how to be me in a neurotypical world. I’ve been called out on here for walking an exalted path. I didn’t know what that meant at the time, but I’ve since learned what it means and in many ways my life could be seen like that, but the reality is, I simply refuse to compromise myself for the sake of fitting into a neurotypical world. I am relentless and uncompromising because the alternative, is suicide. I can fit into the neurotypical world, I can ‘pass’, if I keep moving, and living a nomadic life. But since burnout, I can’t do that anymore, and since I got my diagnosis, I don’t want to. Why would I? 

    It sounds like you need to get to know you a bit better until you can walk into any room and you might never be the most outwardly confident person to walk into a room, but until you’re inwardly confident of who you are and you know that, that is always good enough and in fact, it means that you are equal to everybody else in the room because when you take away a person’s transitory outer circumstances, we are all equal and we are all individuals and our outer circumstances often say very little about who we really are. Be proud of who you are because as we know, it’s not easy to be autistic in a fast paced, consumerist neurotypical world. Our happiness is different to neurotypicals. We have a right to our own happiness, no matter how different that looks to somebody else’s. When you find your happiness, you either will or you won’t meet somebody and either way you’ll be happy and you’ll never again feel like you’re the lowest, because you’re not. But of course when we compare ourselves to neurotypicals, in a negative slant, because it’s always negative, then we appear completely inadequate. But that’s not true. We have as much value as the next person. We simply need to find it in ourselves. 

    Also, when you get clear on why you want a relationship, if that’s what you want, get clear on what you want from a relationship, what you will give, what you want in or from the other person etc etc. The clearer you can get, the easier it will be to recognise her when you meet her. 

Reply
  • Hi there SC79, I’m a little late to the party but I read this thread with interest. My question to you, would be, what is it about the idea of being in a relationship that appeals to you? I know for me, when I thought I wanted to be in a relationship, what I really thought was that it would finally make me ‘normal’. 

    Since getting my diagnosis last year at the age of 50, I no longer desire to be in a relationship. That’s not to say I’m opposed to them or closed off from the possibility, but I’m more interested in getting to know me and on my journey, if I was to meet somebody, etc etc, then so be it but it’s definitely not my focus. 

    In many ways I’m lucky because I’ve experienced (just coming out of) severe burnout. I have barely left my house for the past 17 months and it’s been so rewarding. 

    Look at your comments. It’s littered with clues as to where you are or are not putting your attention. For example, you say that when you walk into a room, you feel like the lowest person in the room, like you’re an imposter about to be found out, so you keep your head down. Do you think you’re going to attract many people to you that way? And it’s only because you’re comparing yourself against neurotypicals and when we do that, we lose, but only 100% of the time! 

    Don’t judge yourself by your circumstances. If I did that, I would see myself as not very much at all. Living off state benefits, I can’t even reliably feed myself every day, I can’t manage my daily hygiene needs or keep my house clean. I’m exhausted a lot of the time but I’m having breakthrough after breakthrough and I’ve gained an acceptance of myself when I didn’t even know what that meant when I first heard about the concept. I’ve now got a specialist one to one autism worker, it’s a nation wide thing (I think but not sure), with autism plus, and I’m learning slowly day by day, how to look after myself. My business plans are coming to fruition, slowly, but they’re not my current priority. My current priority is learning how to look after myself and learning how to be me in a neurotypical world. I’ve been called out on here for walking an exalted path. I didn’t know what that meant at the time, but I’ve since learned what it means and in many ways my life could be seen like that, but the reality is, I simply refuse to compromise myself for the sake of fitting into a neurotypical world. I am relentless and uncompromising because the alternative, is suicide. I can fit into the neurotypical world, I can ‘pass’, if I keep moving, and living a nomadic life. But since burnout, I can’t do that anymore, and since I got my diagnosis, I don’t want to. Why would I? 

    It sounds like you need to get to know you a bit better until you can walk into any room and you might never be the most outwardly confident person to walk into a room, but until you’re inwardly confident of who you are and you know that, that is always good enough and in fact, it means that you are equal to everybody else in the room because when you take away a person’s transitory outer circumstances, we are all equal and we are all individuals and our outer circumstances often say very little about who we really are. Be proud of who you are because as we know, it’s not easy to be autistic in a fast paced, consumerist neurotypical world. Our happiness is different to neurotypicals. We have a right to our own happiness, no matter how different that looks to somebody else’s. When you find your happiness, you either will or you won’t meet somebody and either way you’ll be happy and you’ll never again feel like you’re the lowest, because you’re not. But of course when we compare ourselves to neurotypicals, in a negative slant, because it’s always negative, then we appear completely inadequate. But that’s not true. We have as much value as the next person. We simply need to find it in ourselves. 

    Also, when you get clear on why you want a relationship, if that’s what you want, get clear on what you want from a relationship, what you will give, what you want in or from the other person etc etc. The clearer you can get, the easier it will be to recognise her when you meet her. 

Children
  • Hey thanks again for more great replies.

    I was in pretty a low mood when I wrote that post and when I'm like that the self-loathing and wish to be 'normal' kicks in and I want to press that button that just makes everything go away and I can be like everyone else.

    However in reality I don't want that, I know myself inside and out, I don't need any more time to 'explore myself' or analyse my own behaviour I've been doing that too much for well over 20 years.

    I know I'm happy-ish when Im involved in all my little obsessions and my routine that I 'have' to do, or maybe not happy, maybe not happy, nor even contented, it means I'm occupied, I'm distracted from all the things I'm worried about and fearing etc.

    It's to easy to just stay in that bubble I've done it for too long, and I've been single for 4 years and it feels like I'm overwhelmed by this prison I've created for myself, my safe, comfortable space which no-one can touch, or understand - I feel trapped by it, begin to hate it and want to break free, to LIVE a little, and meet someone who can bring me out of that and experience new and different things, to share experiences with, and all things that come with a relationship.

    I have to do things that frighten me, or worry me, or that challenge my perceptions of the world, and people.

    I don't want to change myself too much in order to be in a relationship, there's always accommodations and little changes you do have make, choices when you enter a relationship but I want more than nothing just understanding and acceptance from someone, that's all - that person doesn't have to share all the things I'm interested in, that's not possible, I can't conjure up the female version of myself and wouldn't want to, just someone who's prepared to make an effort to understand and accommodate my behaviour.

    Circumstances are hard to get around though to even get your foot in the door so to speak of a relationship - people have expectations and suppositions about someone, milestones and achievements that you are 'supposed' to have attained by whatever age, in my case nearly 40.

    I've not really been able to make much of my life so far, for a lot of reasons I can;t just blame depression, social anxiety or now autism for - I've never had regular employment, never known where my next paycheque is coming from, have spent a lot of time on and off the dole [and thoroughly depressed and ashamed by that], I don't drive and have no intention of ever doing so, and unfortunately still live at home with my parents. Those are deal breakers for a LOT of people.

    Once people learn these things [and I cannot lie about them] it's game over, you're automatically almost a non-person, a kind of joke, and a relationship with someone like me is simply out of the question for 99% of people.

    It just makes me despair that people can;t see the person beyond those material things and circumstances but so many people who profess to be kind and considerate and thoughtful and understanding just will not give you a chance. 

    Those things don't matter anything to me, I don't care how much someone has in their bank balance or what they do or where they live I just see the person, just wish someone else would be able to do that for me.