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. 

  • I never assume that everyone or anybody for that matter, can or wants to be like me or that they would want to make the same decisions I’ve made - I don’t know how you made that assumption? 

    You can get a flat, paid for by your local council, by first of all approaching the right people for help. This organisation (https://www.autismplus.org/) would be a good start and my experience of them so far is very good. Or you can contact NAS who may be able to provide support or they may be able to sign post you to somebody who can help to help you achieve your goals. 

    Contact your local social services department and ask them for information of any groups for autistic adults in your area and join. That way you will be around other people, in a safe environment, and you can begin to build your confidence to slowly but surely push your boundaries and try out new things outside of the group. 

    Get clear about what it is you do want. You say you want to do things that other people do. That could mean you want to go robbing banks because that’s what some people do. With the right support, you can do anything you want, within reason and sometimes, like in my case, I needed support to even begin to find out what I wanted as I had spent a lifetime simply trying to fit in. It has taken me more than five years to figure out what I wanted although it has been clearer since I got my diagnosis. Your support worker can help you explore housing options and look at ways you can be supported in your goals of living independently and enjoying a more full and active life. 

  • So what’s you’re plan? You’ve got enough of an idea of what you want to get you started.  Autism plus can help with this. I’m currently working with an autism plus worker to devise a plan to help me to manage daily living and to begin to manage my time so I can set up my business etc. But first of all we’re working on me just getting up everyday and eating and drinking everyday. It’s small steps. A series of small steps. Step one is to get the right support. I was referred to Autism Plus via my work coach at the job centre but you might be able to self refer. 

  • Well that’s hard to know, but would like to find a job I can cope with that has some stability to it, and somewhere to live, to be able to be more independent, to not rely on anyone for anything.

  • I get where you are coming from - you seem happy enough in your own bubble - that’s fine, we’ll im not, not at all, I want to be able to be around people and interact and do things other people do - not because I’m ashamed of how I am, but because doimg different things than what you are used to, what is beyond d your comfort zone is useful and a good thng to do. Everyone is different, on a different scale in this thing, I don’t want to fall out with you but please don’t assume that everyone can or wants to be like you or the decisions you’ve made. You also say what’s stopping me from moving out from my parents home - well you show me where I can get a flat on my own for free...

  • These are the kinds of conversations I love. I honestly adore listening to somebody else talk about their special interest, I do find it calming and there's no effort required on my part, I simply get to enjoy and revel in the massively interesting things we get interested in. And of course I love talking about my special interests, especially when the other person gets as much joy from the conversation as me. When I'm talking to my autistic friends, often times our conversations appear totally random with nothing one person says following on or relating to what another person says and they're so utterly innocent and honest and real and often quite childlike but I love them so much. You can get the cards from this site but make sure you order the right one. I ordered the wrong one by mistake so now have to reorder the correct one but the 'wrong' one turned out to be a pack of similar cards which I'll give to my autism group for anybody who wants one. I could talk to you all day long about my special interests. I know I appear to talk 'at' people but I like the way you put it ~ I'm simply giving an informative lecture, because afterall, that is what I'm doing :-) thanks for that, I like it 

  • That's brilliant. I'd really like it if someone came up to me in a group situation and started telling me about their special interests. I think that would be quite calming as it wouldn't be a conversation exactly, more like an informative lecture. I didn't know those cards existed! Maybe i should get some!

  • Apart from being in a romantic relationship, what would your ideal life look like?

  • I totally get that, wanting to switch the switch that will turn it all off and makes us normal! I've definitely been there. 

    What comes to mind when reading your reply, was something Henry Ford said. He said, if you think you can, you will and if you think you can't, you won't. Either way you'll be right. 

    You said that for 99% of people, a relationship with you would be out of the question. And yes, that's true, but you only want that one person, not the other 99%. 

    You know what you want and I very much share a lot of what you said. I know that if I had a partner, my life, in the physical realm, would expand. But that wouldn't mean I was having a 'better' life. Life couldn't possibly get any better than it is now. Life is life and it's our relationship with it, that makes all the difference. 

    If you know yourself inside out you must know, that you're the creator of your reality and if you were only to live from the place of that which you desire, and not look to outer circumstances to define you, you would come face to face with the reality of that of which you dream of. 

    You say you despair that people can't see the person beyond material things but it is you that can't see beyond them. I'm on the dole, but I don't feel shame. I feel grateful and privileged that I live in a country that is supporting me while I'm experiencing burnout or whatever and I don't define myself by my employment status and if somebody did define me by my employment status then I would simply know that that person is not a friend for me.

    Many autistic people live in their own little bubble. My weekly autism group is called bubble and I certainly live in my bubble, inside my weird and wonderful imagination and I love it, there's nowhere else I would more rather be. But I know that I'm not on this earth to live in isolation, so I'm creating my life in a way that enables me to live in this world, enjoy it, but not be of it.

    You say you 'unfortunately' live at home with your parents. If you don't want to do that anymore then move out. What's stopping you?

    Show people who you are. Don't define yourself by somebody else's standards and ideas. I understand what you mean by being in the prison. I have felt that way but knowing that I'm the only one that can unlock the prison door makes me focus on what I do want. Then I can formulate a plan, with help, and bring into my physical reality, the life that I'm creating.  You can do that as well. Where the attention goes, energy flows. 

  • 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.

  • I tell people straight out that I spend hours researching facts about Henry Ford. I’m fascinated by him. I also tell them how I love spending endless hours alone, in my bedroom or that I love going for walks or I might dive straight into a full on speech about my special interest of the moment. Thankfully, I’m organising my life so that I’m no longer in situations where I endure dreary boring nt conversations and now when I talk to them, I’m usually talking ‘at’ them about any one of my special subjects or I’m pointing out a solution for them to a problem they never even knew they had! Lol! They no longer play a significant part in my life and in fact, I’ve just got one of those ‘I’m on the spectrum’ cards and I’ll just whip it out and hand it to people who I simply don’t want to talk to. I’m in my own little world and sometimes it coincides with that of other autistics and I enjoy their company when I’m with them and I enjoy my company when I’m alone. 

  • Oh i know that feeling. I'm always trying to avoid those sort of questions, but as you say unfortunately they are often the first things strangers will ask to try to get to know you. I find it very hard to answer those type of questions because i don't conform to the social norm for my age group. Sometimes if you have some stock phrases prepared and try to say them confidently, you can then ask the other person some questions and get the focus back onto them instead. (This isn't something i've got the hang of yet, more my intention!)

  • 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. 

  • Thanks for the suggestion. Not really possible to bring someone with me, don't really have a friend that would be able to do that for me, they are either too far away, or unable to face groups of people like that either.

    Good idea though, maybe meeting people 'IRL' as the kids say is maybe the way forward, as the online dating thing is pretty depressing, but again in a way that's scarier to me.

    It's not just anything to do with autism or being socially anxious it's even more having to like answer the normal kind of questions people ask, about what you do, about work and your life etc, I find that really stressful and invasive, which I know is just people being interested or wanting to get to know you etc but my circumstances aren't great at all, my situation in life by this stage is not where it is for most people, there's a lot of questions that are very awkward and difficult that I can't bear to answer.

    Anyway thanks for taking the time to answer.

  • Welcome to the forum. There are lots of women on here and also many people who are struggling regarding relationships, so you are not alone. Just a thought on Emma's suggestion of joining a group of some kind...maybe it would be possible for you to take a friend with you to one? I also really struggle with groups of people, especially if i don't know them yet, but it has helped me in the past to take my sister with me for example.

  • Hey thanks for the advice, and can see the idea behind forcing yourself to take part in group things etc and don't get me wrong I do try and be part of whatever is happening around me, I'm not totally socially isolated, just find it hard to feel like I have anything to add to ay particular group/society.

    AS for CBT I have been offered that before, and have sought help for those issues but I think by now it's such a  part of my identity it's almost too hard to shift, and has given me a really good line in savage self-deprecation. 

    I always feel like I'm the lowest person in any room I walk into, like an imposter who's about to be found out at any minute so I try and keep my head down and blend in when I need to - stick on 'the mask' [as I've seen other people discuss on here] and hope it doesn't slip too far.

    But again thanks and nice chatting to you.

  • Yeah, that's completely understandable- I can see how knowing exactly where you are with these things helps.
    The low self esteem/ social anxiety was definitely a problem for me for a long time, too. I actually started doing the groups to force myself not to be that way. Trial by fire and all that! It's definitely not a strategy for everyone!

    As an extra note on the social anxiety, my brother's not autistic but he has always had massive problems with that (anxiety is another thing that runs in my family) and he's found Cognitive Behavioural Therapy (CBT) really useful. It might be worth considering for you? Your GP can refer you if you look it up and think it could help. 

    You're welcome, anyway, I hope you find what you're looking for! Slight smile

  • Wow thanks so much for such a long and thoughtful reply.

    I have thought about joining groups and societies and things like that but even without being autistic I'm generally very shy and quiet and suffer also from extremely low self-esteem and general social anxiety. I'm just not good in group situations, even when in theory it should be easier when it's to do with something I'm interested in.

    I can't really do casual acquaintances, I just don't really work like that for me, I mean there's people I talk to that aren't friends in work or whatever, but I am kind of scorched earth about things like that, I don't do anything by half.

    I know for someone like me dating sites are not ideal and I try not to limit myself by my condition, or any of my other problems and am very accepting of other people, the problem is if that acceptance isn't reciprocated.

    Also to be honest the fact that everyone on there in some shape or form is there for a specific reason is helpful, for me personally, I find it very difficult meet people anyway and that confusion between friendship and when you begin to have feelings for someone who is a friend is something I've experienced before and it can be very confusing and heartbreaking when you can't differentiate between someone being friendly and something more has been very painful in my life several times.

    I like to know, need to know where I stand, what someones intentions are, what they are wanting out of it too.

    Anyway thanks again for such a lovely reply, really appreciate it.

  • Autistic women definitely do exist- I'm one of them! Smiley So are my grandmother, my (autistic) partner's two sisters and his niece (as a family we are also great anecdotal evidence of autism being hereditary, haha!). We're actually pretty common, contrary to popular belief, but we have a tendency to hide very successfully among non-autistic people; it's only relatively recently that understanding of autism has advanced to the point we've started being noticed/diagnosed anywhere near as often as the boys.

    Don't limit your options by label by any means, though! There are multiple successful autistic/non-autistic and autistic/autistic relationships in my family alone. Slight smile Either can work well, it's really a case of the individual personalities involved. Slight smile No such thing as 'Normal' and all that. 

    Re. dating sites, I've never felt these a particularly good place to search for a relationship, especially as someone on the spectrum. It's better to get to know people face to face through a shared interest- have you thought about joining some social groups/clubs of some description? I met and got to know my partner of 5 years through an "assorted monthly geeky activity" group and a board gaming group. :P

    Joining a group based on an activity you're already interested in takes a LOT of the pressure off. You're not there solely to find a life-partner (which is a pretty massive amount of pressure to put on yourself), you're having fun doing something you enjoy. It helps massively with your confidence around the new people you meet there too and so leads to you making much more positive interactions/impressions. You say you don't want a lot of close friends and I understand that, but you could make some very nice casual acquaintances.

    Lastly, I have found that if you're very matter of fact about the whole autism thing and don't let it limit you in your own viewpoint (which I had to really train myself to do, it's not easy when you worry about what people's reactions to it might be) the vast majority of other people will follow your lead and behave the same way.
    The ones who don't aren't worth associating with, so bonus: you've found an easy good-person-filter! ;)