Onset of Loneliness since diagnosis.

Do you think it's even possible for people to understand and accept you and not just you but any of us, how is it even possible for one person to understand another? In what sense? For example, if you said to somebody 2 plus 2 equals 4, are you saying that if you say that to somebody they don't understand? What is it exactly what you want them to understand and accept and why? I think the more important question would be why do you want them to understand and accept you? 

The part about honesty is a bit tyrannical - just because you are always loyal and I presume honest, why are you putting that quality on others? Why do you seek to control others? That might be part of your autism. We like to be in control but once we realise that, we can see that it's unreasonable to expect others to behave in a way that we wan them to behave and that it is more harmonious for us to accept them as they are. You can still be you, an honest and loyal person regardless of whether others are or not and in fact, you will have more influence over them if you simply stick to being who you are and leave them to be themselves. You will always feel let down if you expect people to behave in a certain way because people aren't like that, they're not robots and sometimes people don't act in ways that we want them to so if we accept that, we will never be disappointed. 

As for trusting people, that also is a foolish thing as again, we can't control people so it is better to simply put our trust in the things we can control, which is ourselves. I don't think it is even possible for us to not be judged by others, that is simply the way that we make sense of the world, it's what we do but if you don't put your trust in people, they can never reject you.

If you think you are the same person now, as you was before the diagnosis, what was the point of the diagnosis? I would say if it makes no difference then don't give it any attention, just carry on as you were before? The diagnosis is a way for you to understand yourself better and begin to make different choices etc based on the new awareness but if you're saying it hasn't given you any, then why not just forget about it?

You have truly beautiful gifts, you can do carpentry, play the piano and garden - with precious gifts like those, I too would be unmotivated to change anything about myself. You have been blessed with abundance and a rich life. Yes, like you say, we all have what we might call 'tough times' although they are simply the acts of nature, balancing itself out, as it does. Read Emerson's essay on compensation, it explains the nature of nature beautifully and why we have tough times. They are simply the result of nature balancing itself for our greatest good.

In that last sentence, it sounds like you're talking about ADHD. I am slowly coming into finding ways around making that gift work better for me. I only recently found out I had ADHD and as I've been working on the autism for the past couple of years, i''m not quite ready to start working with the ADHD just yet but I did try ritalin and it was amazing so i'm waiting for a prescription for that, but in the meantime, I'm slowly working to get my daily yoga and meditation routine back up and running and that will decrease the need for medication but until it is back up and running, I will very gratefully take the medication because for the first time in my life, when I took one of those little tablets, I was able to get on with what I wanted to do, with no anxiety, in perfect ease so I was able to actually finish what I started! It was amazing, i loved it :) so you might want to consider giving meds a try.

I got my diagnosis in October 2017 and I have only recently, in the last couple of weeks, come to a full acceptance of it and the time from the diagnosis until now, has been the biggest roller coaster journey of my life, which I was so not expecting. It took me to the depths of sheer loneliness, despair and anguish, to the point I thought I was going to physically die, the pain of the emotions was so great but on the other hand, I have had realization after realization that have felt like I was writhing in ecstasy and they keep on coming. I have had several times when I have thought, this is it, I accept it now, only to be plunged back down into the depths of despair. It's been very up and down but I have finally accepted it and I know that, because my life has now slowly started to move forward. I have been working intensely, every week, with my autism worker for about 18 months now, as well as support from the psychiatrist who diagnosed me, my work coach at the job centre, two well-being workers and another work type coach at Reed. So I have a lot of support but I also put a lot of effort in myself. If they give me an inch, I give them a mile, because that's how I life my life, I go to give, but I have also learned to receive as well and the support has been tremendous. I also joined a couple of local autism groups, which have proved priceless and of course, coming on this site has also been a tremendous help. Sharing how I feel/think or whatever, on here, really helps me to understand myself better as does reading other people's experiences, because of course, we are not always aware of ourselves but we can spot ourselves in others and then begin to make the relevant changes, to start laying the foundations for new habits, new routines, new ways of being, that serve and nourish us as opposed to being in survival mode. But the diagnosis was life changing for me, literally, in so many ways, it was a big thing. it answered the questions I had been asking all my life, so for me, it completed my life, it completed me. All I ever wanted in life was to know who I was and where I came from and what I was doing here and the diagnosis gave me answers to all those questions, so for me, it completed my life, but it took almost two years to get to this point, there was a lot of ups and downs I had to go through before I got to this place of completion and a lot of searching etc before that, all my life in fact, all my life I have been working towards this moment, searching for the answers, so I guess a diagnosis is different for all of us. If you think it doesn't change anything then maybe it doesn't. For me, it gave me the answers to my life long questions, which would be a big deal for anybody but if you haven't got such deep questions then I can see how it might not make such an impact.

Anyway, it's a while since you wrote this and from glancing at some of the comments, it seems you might not have been feeling so great at the time of writing, I trust that has changed and you're feeling much better now. You'll get a lot of support on this web site, you're doing the right thing by reaching out. Best wishes, my desire is to see all autistic people living their lives according to them in peace, joy and happiness X

I hate the word "victim". I do not see from re-reading my original post quite what you saw to give you that impression.

In all of my posts I have never ducked my own responsibility for my life and the choices I have made, In the short time since my diagnoses I have only ever pursued the truth with regard to the true extent of the influences the Autism and ADD have had on my life. It turns out that my view of myself formed over 60 years has been entirely wrong and so for the remaining time I have, i want to get out of my shell and be more involved with the world around me and the people in it-this strikes me as an aspiration of someone who wants to explore new things,places knowledge not someone who would prefer to dwell on the past and revel in their "victimhood", or cling to it like a comfort blanket.       I thought I had made that quite clear.

Also, i am not sitting around passively waiting to be chosen by anyone, this is true for more than one reason the principal one being that I do not know ANYONE, I am not in a single social group, I never have visitors, I only ever visit my former wife-and then usually only when my adult daughters are present. I perhaps know a dozen people with whom  "Hello, how are you'?" can be exchanged and that is it.

What I was saying was that when I felt I was an Alien stranded on a problematic planet, I could cope with being alone as I had zero expectations for a social life never having got on well enough with anyone for long enough to develop one.Since my diagnoses though I see I am not the only one who is affected in these ways and so the unexpected desire to go out, armed with a slightly less caustic self-image, feeling less like a heap of putrid crap than normal and.....meet people. I still want this but I just do not know how to go about it-I never have, 

I am doing everything I can to build a better life for myself with the aid of this new-found self-knowledge (and the Med's for my ADD) I feel I am in a potentially winning situation and that there is a whole new world just a fingertip out of reach,I want to enjoy it, to "fill my shape" to engage with others and experience more of life out in the sunshine, I said that I did not know how but this desire for company is surprising and uncomfortable, I don't want to bury it like I do for so many other things and let it fester away inside, I want to make a breakthrough and get some real friends. I don't feel like a "victim", I am a damaged electro-mechanical device which came with no instructions but some of the lettering on my various dials has suddenly become legible and a few of the lights are now working-new-found hope and I want more of it! 

Have contacted the Guildford group -following info given to me by the Epsom ASD/ADHD team and hope that what could be a great adventure will begin-I still have panic attacks and lose the ability to breathe when I am the object of attention so it will be a long haul with no guarantee of success but I want it and this does not strike me a the attitude which could be expected of a "victim".

Hi Chewie,

I see many similarities between us-particularly with regard to self-motivation, with me it is part laziness, I suppose but what stops me from doing most things is the almost certain knowledge that I will screw it up somehow, even if others see nothing wrong with what I have done, I will be aware of every single flaw, however tiny or insignificant. i am the perfectionist doomed never to attain it.

The "3 flake rule" would never work for me ( If that rule ever got applied to me,I would be in my own Gulag in the most isolated and forbidding bit of Tundra in Siberia! )however as being all too aware of my own faults, I have to accept that others have their faults too. If we let others down or mess things up for them somehow, it is not necessarily an act of malice, we are human, we all make mistakes but basically most of us are driven to do the right thing and do try.

I have been forgiven often for things I have done, it is only fair that I follow that example, I had a v.nasty jehovah's witless upbringing and now have no time for anybody's imaginary friends but the one thing I considered to be of true value was "Treat others as you would yourself.."-or words to that effect. We all screw up, we all need a break sometimes and expressing kindness and forgiveness is often quite the opposite of the weakness it can be mistaken for..

I'm the same chewie. I'd have to pay for diagnosis. I feel like a fraud being on this site or meeting up with groups as I'm not formally diagnosed.

I dont know for definite if I'm autistic. I've struggled with people as 90 percent took advantage one way or another until I realised recently I didnt choose those people they chose me and I was just happy not to be on my own! Now after all I've been through I'm happier alone (I'm 37 years old and only just understanding myself)

What Karla sai

Hi Blackbird,

I hope you have a good day today.

I'm just wondering a few things having read this. Firstly, I sounds as though you're viewing yourself as the victim of the situation. That is not to say that you're not, on some levels, but what it does it put us into a passive position of being the one waiting to be chosen by others in order to make friends.

I only recently got diagnosed, even though people had been hinting to me for years that I was on the spectrum, but before this, and before it had even crossed my mind that I might be autistic, I made friends with quite a lot of people on the spectrum. I try to be open-minded and I was just looking for people to connect with. Frankly, I wasn't bothered whether or not they were on the spectrum at all. I'm saying this because there will be other people out there who are open minded and who will connect with you and want to be friends with you.

I personally think that when we assume negative outcomes, we somehow give off rejection vibes and it becomes a self fulfilling prophesy. If you can come round to seeing yourself as the subject of your life, able to make choices about which people to allow into your close friendship circles, and which not, this will make you feel much better.

I really need this advice myself and I admit that I've not been too good at it!

I recently connected with someone who, like me had just recently been diagnosed, and we had some deep conversation but then he bolted and shut me off! I think it can be complicated for heterosexual people with male/female friendships, but to be honest, I did feel quite hurt nonetheless. That said, misunderstandings can also occur. NT's always say that autistic people have trouble communicating, and people have been saying I need to work at this for years also.

Anyway, I'd just say, don't give up on forming friendships. I'm sure you will do, and remember it is also about who you want in your life and which people to be close with.

Bye for now!

i choose to engage with people who i know will engage back, kinda figured out the hard way what brush offs are, as i don't naturally pick up on the subtle signs people give off.

I tend to live by a 3 flake rule now, like if people flake out on me 3 times in a row, I'll move on. it's a formula that works for the way my mind works, rather than seeing myself as an eager to please puppy (it's the only way i can describe how I can be).

I "choose" to be alone also but this is not the opposite to "choosing to engage" and becoming a part of social circles, the few people I know well enough to talk to would almost certainly not "choose" to have me any further into their lives than I already am. This is all so deeply frustrating, on here I can express myself quite well and probably appear to be someone who would be quite articulate in actual direct conversation but it simply is not the case, When I meet people in the street I become nervous, tongue-tied, extremely self-conscious. What I say comes across a series of "statements", not free-flowing chat and I always seem to mishear-or simply not hear all that is said to me. This can be amusing but most of the time I just look stupid. If I speak without some sort of mental preparation I tend to say all the wrong things-or nothing which makes any kind of sense to others) All this plus whatever they see in me which they do not like makes me a person best kept at a distance-it has always been this way so the only alternative to isolation is to keep trying (vainly) to find a way through all of the obstacles which are piled up all around me blocking my way whichever path I take.No thanks, not any more, been there...etc

I can't see any prospect of advancement socially in the (newly-identified-for me..) NT world so I have been in touch with the local ASD/ADHD team who have promised to get back to me with some info re:Adult Autism groups in Surrey, I may end up travelling a lot but if I can make significant contact it will be worth it.

Thanks for your reply, I wish you well.

Thank you for your kind words.

Sorry I have not got back sooner-been digging in the garden a lot and usually too zonked out to read my emails.

Lot's of questions-I'll leave the first one until the end.

What I want from people is to be understood and accepted, I also want honesty from them and as I have always been loyal to the people I have regarded as "friends" in the past I expect it in return-this is where I feel let down the most so trusting people is difficult and my defences-conscious or otherwise can not often distinguish between friend and foe. I'd like to be able to talk freely without the fear of being judged and rejected.

I was diagnosed in January with Autism, the ADD came out during my assessment and I received a separate assessment for that in April ( of this year) I am not at all upset by this, on the contrary I see myself differently and in not quite as negative a light-but old ways of thinking take a lot of work to alter/erase. what I feel I am up against is that, irrespective of the diagnoses, I am still the same person who has always existed on the outside and by now-despite wishing things were not like this I would probably not know what to do with acceptance anyway.

Fear not for me, this will pass and I am used to dealing with tough times/a big boy now do and at least have plenty to keep my hands busy-carpentry and my piano-and the garden of course.

Now, to return to your first question, I have never once produced a single piece of work which did not show evidence of a lack of concentration or an omission of some sort due to my forgetfulness,the day when I can bypass the part of my brain which acts like a Snakes and Ladders board for constructive thoughts will be the day when I will have made the breakthrough I have craved my entire life. The ADD is at least equal in terms of destructiveness as the Autism and these are the spanners in my works.

thanks for taking the time to write, my very best wishes to you.

Hi there, I realised after my own ASD diagnosis that the support available is really rubbish so I started my own group in my local area. We meet once a month to do an activity such as sketching/meditation/other and we have a Facebook group page and I meet up with some of the other ladies in the group individually outside of the group meet ups too. It’s really really good being able to spend time with other autistic people. I would highly recommend it

Hi there, thanks for your encouragement, I have looked for ASD groups near me but they cater for kids/parents only. Also I did ask on here if anyone was interested in starting a group but only got one reply and he/she did not respond to my answer (about what sort of group?) so that was the end of that. I do not know a single Autistic person and have no idea how we would react to each other if I ever met one as we are all highly individual and complex. I think I will have to get in contact with the ASD/ADHD unit in Epsom to see what they can advise-I just have to get out and start to live a bit. I have tried talking to people using very much the same line of friendly, gentle questions, most of the time I get a limited response-rarely rude but cool and as I can never seem to think of anything to add to keep the "chat" going without it feeling laboured and artificial (which it always feels like to me anyway) 

The idea of spending time with others on the Spectrum and possibly some with ADD too is very appealing so will definitely get on to Epsom and give it a go.

Blackbird, I think what I would say is there are plenty of examples of people who are known to be on the spectrum who have made a success of their lives, so your situation is far from hopeless. However, it does take a determined act of will to 'manage' your condition while striving to live a healthy life, and you should never feel defeated because you aren't; it's your mind telling you this, but your mind can also accomplish much more than you imagine.

im slowly getting there... need to buy shelves (this weekend), then get plumber round to finish off some odds and sods and have him help put up said shelves.

once thats done, my OTT sneaker collection can go on shelves, of which pairs that don't make the cut will be ebay'd... along with a few boxes of DVDs which i need to get rid of to charity shop once ive sorted thru....

AT least in my mind it's a fluid operation. In reality, first 'choice' i have to make puts up a roadblock, and i end up doing other stuff... like sort of cleaning kitchen...

Go on Chewie....you can DO IT!!

Did you never listen to Yoda's advice? - “Do or do not. There is no try.” :)

tell me about it.

I need to finish my flat off... but can't because I need to do X, but cant do X until Y has been done and so on...

It's not even big jobs either, just loads of little ones... I had more motivation when I had no bathroom or kitchen. I guess the survival instinct kicks in, and I go manic, and once the goal has been achieved, slack mode kicks in.

Totally agree.

I have been actively trying to promote my own "self care" and mindful that I sometimes work too hard (maybe an inherent sense of self worth, imposter syndrome or some form of overcompensation going on there!).

Mixing with kinder folk is definitely been for me a good way forward. 

I totally also get the "obsessive mode" setting.... though that sometimes slips into periods of procrastination!

hello! Thx for remembering me!

been busy working and trying to get my mind back into some kind of ‘order’ with some self CBT.

Everyone has their own solution to their own unique problems. Kinda feel like I need to get myself into obsessive mode in order to do things. To function I have rules in my mind. Taken me a long time to convince myself that those rules are for my own mental wellbeing and that I shouldn’t break them to conform to other people’s levels of acceptance?

Cut out the toxic people who pretend they care because they have to keep up that image, they are the worst, always invite you out, yet largely ignore you when you are.

Chewie said:

It doesn't change that I accept that I prefer to be alone, and would rather pick and choose to spend time with other people on terms that allow me to be comfortable in 'social' situations.

Well said Chewie (and good to see you post!).  There is a very clear distinction of isolation by choice and a sense of enforced isolation due to others being less understanding or accommodating. 

Be thankful you have a diagnosis, but having a diagnosis shouldn't change anything about you or who you are, it's more for the rest of the world to deal with.

I've got a 'sort of maybe' half of a diagnosis from the NHS (Am I prepared to spend £££s to justify myself for the rest of the world? nope).

It doesn't change that I accept that I prefer to be alone, and would rather pick and choose to spend time with other people on terms that allow me to be comfortable in 'social' situations.

Be content in your own space, it's your life, your rules.

Most 'normal' people just don't understand - but some do. I've got a small (can count on one hand) circle of people, who don't flake on me (I have a 3 flakes and your out rule), who respond positively to me reaching out for a coffee or a bite to eat.