Undiagnosed 34 year old (intro and brain dump)

Hey there

Not sure what got me to actually come here and engage (added after completing the post: okay, maybe there is something, which I'll get to).  Maybe the social pressures and anxieties that come with work's Christmas parties... off to one tonight!  I enjoy socialising (or maybe more accurately, enjoy the company of others - I see actual "socialising" as the hard work necessary to make other people comfortable sticking around you in the first place), but it's not without its challenges.

I first suspected I was on the spectrum (if a mild case) roughly 10-12 years ago when I used to volunteer for a local support charity and they were training us on mental health issues.  I've always struggled with shyness to the point of "it feels like a bit more than shyness".  Never had a proper in-person relationship (had a few "online things") as holy moly that's hard mode.  Anyway, Autism and Aspergers Syndrome came up in the training and what to look for, and I was listening to the list for Aspergers Syndrome like "whoa, that's me.  That's me.  Yep, that's me.  Oh that one's totally me." and it seemed to explain a great deal about my childhood and life up to that point (I was fighting back tears in this meeting as I was like "holy heck, a way to understand myself and even people out there who might actually understand me" but never took it further)

I do think it's a mild case - my cousins are diagnosed (can't remember if there's a genetic predisposition) and from what I hear it affects them quite heavily but the biggest remaining symptom at this stage of my life is eye contact avoidance.

Don't know if I want a diagnosis or not.  For one thing I've always been too scared to bring it up.  But to me (just to stress "only me", I'd not expect the same of others in general; everyone's different and has different needs), I've always been scared that I'd end up using it as a crutch rather than making the effort to be "normal".  I've managed with most things eventually - even faking eye contact for long enough to smash a job interview and land a job, and thankfully it being a job where I'm staring at a screen 99% of the time managed to get through probation and keep it.  Given that I have a job, for the most part that ticks society's "normal" box or at least their "mostly harmless" box (I'm a non religious white male) and so it's tolerant enough of my existence :)  So I'm not pushed into seeking diagnosis.

I took a few online "tests" back in the day and they seemed to suggest there is something mild and around my suspicion of Aspergers.  But I'm never really sure how reliable random internet tests are.
A site named 4chan would have me down as "an autist" right away, but they just enjoy using and abusing stereotypes...

People who are touched by autism do seem to pick up on me.  Some don't say anything but just sort of make 'gestures of understanding' like when I went to a convention meetup recently the mother of an adult friend with autism latches on and tries to get us to engage etc.  In another case a randomer in the pub (apparently the mother of a guy with autism) admittedly got a mouthful from me as she just immediately threw the label at me in ire at using technology in a social setting (I know it's not helping me to get better, but it's nice just 'being around' people, the feeling of civilisation, and sometimes I just want to relax) and I'm not massively appreciative of unsolicited first-impression diagnoses.  Especially from someone I don't know, who's not "with me" (I think there's fairness in people who are actually "with you" to expect certain things like putting technology away) but just marched over because she was offended by me just existing in the corner minding my own business...

The main lingering things for me now are

1) Strong shyness / quietness and how my ability to churn out LOTS of words online goes through like a stage fright filter where it all completely disappears and translates to "..." in real life

2) Eye contact avoidance.  The biggie.  It seems like when I landed this job 10 years ago (about to the day) I was just starting to fight my way through it, at least well enough to keep up an illusion of reasonable eye contact for half an hour - an absolute must for any job interview as it seems people feel they can better assert dominance via certain types of eye contact and firm handshakes and whatnot.  Oddly enough it's easier for me to maintain eye contact with people I don't know, I guess because it's always in my mind if they know me they'll notice increased eye contact and bring it up and I'll get embarrassed or whatever.  I then let it slip and the cycle repeats until I meet someone new.  But yeah most of the time I'm looking away and find it really difficult, like actually fighting to get two like-poled magnets to keep in contact.  I don't have anything "to hide" per se (well.. I mean.. everyone has something.. but nothing that would get me into trouble), but that thing they say about the eyes being "windows to the soul" (it doesn't help that normal neurotypical? people say this as it suggests it's not just the suspected-Aspergers seeing it that way) rings very true and it feels really invasive; I don't like being expected to let people in there.  Like, it would never be acceptable to expect someone to take off all their clothes and present themselves naked to someone, yet it sort of feels the same to me.

It's the second one, the eye contact, that I really want to try and address.  Seems a tall order after all these years, but just maybe it's possible.  It makes little sense to be great at 1) while still being unable to look anyone in the eye, and I know that it often makes one look shifty.  

Actually thinking about what sparked me to come here, I think it was when I was goofing around with a video selfie and couldn't even look the camera in the 'eye' then played it back and was like "huh, so that's what it looks like to others" (kind of odd) and it's been semi on my mind since, particularly with a social event coming up.

So I thought nuts to it, I'm undiagnosed and uncertain of what I am, but if anyone can offer information and advice on improving eye contact it's going to be the people who 'suffer' in similar ways to me.  Google wasn't really helpful - it only came up with things addressed at normies (is it ok to use that word?  I crossed out 'normal' earlier in jest) like "how to avoid pressuring an autistic person into eye contact" rather than self-help for the autistic person.  So here I am.  Sorry if the intro section isn't really the place for all this detail but I wanted to unload and go from there.

If you read all this, thanks, you have the patience of a saint.  I find it often helps with processing what's on my mind to just type out a textwall or two, even if no one reads it.

  • I wanted to get a job working in a pub, I really liked the thought of it I was 18 at the time. I was no good at adding up. I’ve got dyslexia too and so numbers I get confused, so if the pint was £1.60 I would charge for 2 pints £280 and so on because I only wanted to give 20p change then I would not get confused. The boss was pleased at first said his takings gone up. Then within a month he said :”I’ve had complaints from my regular customers, saying your short changing them have you? I explained that I couldn’t add up well so I did the easiest thing for me to give them some money back. He said “your fired. 

  • With the eye contact I look at people’s teeth mostly, I look in their moth I often think they have bad teeth. I think they think I am looking at them in the eyes but I’m not, they seem to act normal.  I don’t know if they know if you look into their eyes. Really you would think it’s only lover’s that would want to look into each other’s eyes. 

    I think if you have got High function autism, it is ok. I would say do what makes you feel comfortable, that is what I do. I try not to get to overwhelmed, I get overwhelmed having lots to of varieties of food in my freezer. Can’t think what to eat with to much to choose. All week I’ve just had one jacket potato with butter and cheese or tuna and butter.  I don’t like to think about cooking many things. 

  • I would question whether a diagnosis will be much use to you. If you are holding down a job and are not being treated for a mental health issue then I don't see what would be gained. You may well have a personality type that is introverted and you may struggle with eye contact etc but these things are more or less some of the things that make you an individual. You may find it useful to understand yourself better by reading about aspergers and autism but everyone can benefit from being more thoughtful and sensibly self-aware.

    I ended up with a diagnosis after clattering out of yet another job - being fired or walking out of jobs is fairly common experiences for autistic people who manage to get a job. Being unemployed/unemployable is also very common. I did find diagnosis and some guidance from the local mental health guys to be useful in pulling me back from the brink - I have worked out what jobs suit me and I have also worked on some behavioural problems that I was unaware of. I score about 40 on the test and know some guys who score below 30 who are like minded but not in need of diagnosis or anything like it. this forum is very good as you get some good advice and nobody distinguishes between people with or without diagnosis as it is always a bit arbitrary in any case.

  • Hey no problem at all about your choice of words, really not an issue :)

    If you are finding that the features which I describe add up and if you are pretty technically minded, you probably do have mild Asperger's Syndrome. There's obviously a lot more to it, but you have already outlined many features independently.

    Don't worry about the creative aspect, almost all creativity is 'copied' from nature or the physical world around us anyway. Some of the greatest painters and artists ever did no more than to accurately depict exactly what they saw. Look at works of art by the Pre-Raphaelite Brotherhood, people like Millais and Rossetti. Look how photo-realisitic their work is, how accurate the dimensions and proportions are. Some of those paintings could be photos. Obviously they're not, but they could be. These people were celebrated and their works hang in famous London art gallieries. All they did was to copy something from 'the real' accurately and to depict it. You're not so different. Music is math.

    You have numerous aspects of ASD leaning towards the Asperger's Sydrome side specifically. Yourself and others have piced up on this.

    The reason you are 'here' on these forums is because in some way, you feel that you would like or need some kind of resolution, help or acknowledgement. If things have got to a point where you came here and sought out people like us, I'd say you probably could be diagnosed with more than just 'traits'. One factor that affects diagnosis (this may seem weird and arbitrary) is whether your traits cause you to suffer at all, even a little bit. Quite often if the answer is yes, diagnosis is formally given and stuff like CBT recommended.

    It's good you took that test, I have actually taken it myself. Think I am a 30 or 31, still high functioning but with the occasional meltdown (like this morning which I won't go into lol! Oh lord...)

    You are probably like me with a few extra 'sanity' points haha. I still get a bit 'primal' if people 'lock' eye contact with me for too long, I am a bit more of a creature. I'm ok with that though and I know how to handle it productively! :)

    I'd say - get diagnosed. What do you possibly have to lose? You only stand to gain armour in certain situations and it;s foolhardy to throw that away (even if you think you won't need it, you don't have a crystal ball!)

    You also stand to meet people and work on strategies to overcome your issues (like the shyness). It will be vexing at times, but in the main diagnosis is really good and positive. Get it looked at! :D

  • Just saw someone mention an "AQ test" so decided to look it up and tried the one at aspergerstest.net.  It came out with a score of 26

    • 26-31 gives a borderline indication of an autism spectrum disorder. It is also possible to have aspergers or mild autism within this range.

    So for what these online tests are worth, extremely borderline which would explain why I'm even asking myself whether I'm dramatising :)

    To be honest, if I'd have done that test 5-10 years ago, I think the score would've been higher.  I know there are some introversion kind of questions I would've answered differently in the past.

    Not a replacement for diagnosis I know, but another indicator that it might not be much.  This is the thing, I know there are some in my life who would say "come off it, you're just a bit shy and need to try harder" and this doesn't prove them wrong :p

  • Thanks for a detailed and thoughtful reply @viceversa, really appreciate the time you put into it.

    BTW apologies for any problematic choices of words.

    The 5 positive points you mentioned do mostly ring true.

    1) Yeah I don't like lying and if I did for some reason would tend to agonise about it after.

    2) I'm in IT doing a bit of everything, which includes some coding.  Spotting patterns, sure.

    3) As 2 - I have to have good technical ability for the job.

    4) I'm not particularly creative.  Decent at faking it (for example getting a lot of 'inspiration' from other sites and applying them in the web design part of my role, or picking existing CMS themes that look decent and making them look cleaner) but given half a chance our Marketing people prefer to get an external company to "add a bit of polish" :)
    Give me Lego or Minecraft, and the best you'll get out of me is a box, or just copying someone else's design. 

    5) Yes and no.  I do care what people think about me so that comes into play, but I try to stay objective and open minded. For example, it drives me mad that people right now seem heavily divided and don't want to understand each other - politics being the biggie with everyone (well, at least online) being on the "far left" or the "far right" and flinging insults at each other where I'm somewhere middle-left feeling more and more lonely :p  But actually as I like to be liked and accepted it sort of helps, I like to see things from all points of view and respect them and have a range of friends that many would think incompatible to be friends with at the same time.

    In terms of others seeming to recognise it in me (I say "touched by" to include carers/parents) just for more detail

    1) An ex colleague who has had an autism diagnosis herself and now runs a local support group, I said I think I might have some mild form and she said "yes I thought so as well"

    2) Parent of friend with autism (from that convention I mentioned), well she's never outright said it.  Just been notably inclusive and encouraging during my shy moments (again, I'm a fair bit better and always seem to improve a bit more when I put decent effort in, but still have those "loss for words silences" a bit too often)

    3) That randomer in the pub was a parent of someone with autism and at least heavily implied it i.e. "my son's autistic so I understand if that's what you are but {some rant about me having a laptop out in a pub}"

    For now I'm thinking, make a proper effort at improving the eye contact situation.  In terms of shyness I'm doing a lot better (though best after a couple of beers, admittedly) and had a pretty decent time of the aforementioned party and kept some chats going.  So I have some reasonable faith in my self-help abilities, even if I suspect there may be some Aspergers there making it a little harder.  I don't have meltdowns or anything like that, so that shouldn't be an issue to defend myself from with a diagnosis.  I've just never put a real, concentrated, long term effort on improving the eye contact problem.

    Arguably, I may only be here because there are some shared traits.   Admittedly the only way to prove things either way is to attempt a diagnosis.

    If the extra effort that comes from actually digging around places like this and looking up self help things etc doesn't work, then it would probably be a good time to put much more serious thought into getting it looked at.  But I don't know if I'm inadvertently dramatising a simple lack of effort and such, yet :)

  • I had a good read-through of everything you wrote here. Here are the things that stood out to me in order of least to most important:

    1.) Shyness: this is a trait of some forms of autism like Asperger's which affect the subject of the condition in terms of social interactivity. Notice that I didn't use the words "suffer" or "disorder", we can get onto that later.

    2.) Eye contact: this one stands out a little more to me. That being said, people who are 'just shy' also don't like looking people in the eye. Because they're shy. That's how shyness works ;) - but, you say that this is particularly strong and uncomfortable. This then says more than the shyness.

    3.) People 'touched by autism' seem to befriend you, pick up on your similarities without stating so explicitly - or give you an informal diagnosis (fun times). People who suffer from many medical conditions tend to see the world through their own lens. Whilst this is strongly discouraged for many medical conditions as it can lead to misdiagnosis of serious illnesses, in mental health it is a little different.

    I have found in particular that people with Asperger's (including myself) have excellent cognitive pattern recognition skills. If someone with Asperger's diagnoses you with Asperger's - of course they could be wrong (they're probably not medically trained) - but this can actually be a very strong indicator, especially if it's happened multiple times (over 3 times?)


    Implications of diagnosis:

    • You gain more legal armour in the workplace (against dismissal). Don't abuse it, but if you're entitled to it - get it!
    • You become entitled to your employer having to make 'reasonable adjustments' in the workplace for you. You may consider that you wish to work from home once a week. With a diagnosis, you probably could.
    • You gain more legal armour in general. If you have an outburst or a meltdown in public then you have a reason not to be locked up or thrown in the 'loony bin'. In your situation this is unlikely to happen. But why take any unnecessarry risk in life? You don't have a crystal ball. You don't know what will happen. Get diagnosed, make this worry obsolete
    • Don't push your luck with using your diagnosis as a crutch. People around you (and old John law) will quickly realise if you are just trying your luck. Things can turn from rosy to ugly pretty quickly if you are deviant with your diagnosis
    • You will gain more understanding about yourself and who you are
    • You will be compelled to set aside some money, get the proper help and come up with real strategies (along with your psychiatrist, if you need one) to deal with your condition(s)
    • Never forget that more than one condition may be diagnosed. I knew I had Asperger's pre-diagnosis, but my ADD was a total surprise

    If you are undiagnosed you suffer all the potential downsides and are held accountable to all of them. With diagnosis, you have some protection and understanding of what's happening. Fine, don't use diagnosis as a crutch. But at least take on the suit of armour you are entitled to. Families on low incomes are entitled to financial subsidies - and they take them.

    You are entitled to certain legal protection as someone with a mental disability (if it turns out that you have it) and like others, you should take what you are entitled to. If you don't, no one will give you a medal or be on your side. This is how the system works, use it.

    Having Asperger's Can be Beneficial

    If you are high functioning like me (which I suspect you are) then this condition has loads going for it:

    1.) Honesty. You will likely be honest, or appear very honest to others which will benfit you socially and earn karma points

    2.) Cognitive pattern recognition. Do you do engineering? Are you a coder? Do you just 'get' the language of music? If you have Asperger's you likely have strong pattern recognition skills. You can warn your boss of developing issues before they even breathe and break water. You can be a total AWACS

    3.) Technical ability. Due to point 2 you may have some known or unknown technical proficiencies. That being said, pattern recognition doesn't always manifest technically. It can manifest creatively (music is math after all). Technical is more likely, though. I'm a web-coder, but also an artist

    4.) You're not a dumb number-nerd who can'd 'do' creativity. People with Asperger's demonstrably can be creative, they just usually have a method behind their creative process which is more rigorougs. Some of the most accomplished creatives I know (including a victorian fabric corsetiere who earns hundreds per item sold) have Asperger's syndrome

    5.) Unbiased. You will likely be more interested in 'the truth of the thing', rather than how others percieve the matter (or you). This will annoy middle management but earn you the respect of senior management rapidly. Ignore MM

    Does any of that ring true in addition to the points which you raised?

    If not, you may not be affected that much by your Asperger's tendencies and may not need formal diagnosis. If so - I would recommend getting diagnosed by a private, qualified Psychiatrist ASAP.

    Preferably Dr Sanjay Jain of The Priory in Woking, who is an amazing human being. Anyone who has Asperger's could benefit from meeting him, he's a psychiatrist specialising in Asperger's and other mental health conditions. One of the few who can accurately make multiple diagnosis.

    Hope that helps.

  • Just on the eye contact: this was always a problem for me but when I volunteered at the CAB it was suggested that I look at the client's mouth instead and this usually works for me, especially when the other person is speaking.  Presumably it gives the illusion of eye contact.  I find it more difficult to maintain eye - or even mouth (!) - contact when I am the one speaking, as it distracts me from formulating thoughts and words.  I wasn't diagnosed with AS until recently (at 55).

  • I would advise you to get a formal diagnosis. You don't have to tell people about it unless you want to - although it's a good idea to put it on a medical form - but you won't have to worry with the uncertainty any more.

    Also, for 'normal' (what is normal?) people we tend to use the term NT i.e. neurotypical round here.