Questioning Myself

Hello

I am 36 years old and have spent what feels like my entire life trying to make sense of myself and my place in the world. My father died when I was a young child, after which I only ever remember feeling anxious all the time about everything. I have always placed a great deal of importance on that life event in explaining the way I was, whilst at the same time unable to shake the feeling that something else just wasn’t quite right. I have tried counselling a number of times over the years which has had little impact, but today I had a conversation with my therapist who I have been seeing for a number of weeks now and we discussed the possibility that I possess a number of traits compatible with autism.

Socially I have a small group of friends, all of which I have been friends with since school, some since primary school. Despite this, for much of my early high school years, I remember hearing about how they had met up at the weekends or after school, whereas I was always very isolated, choosing instead to stay at home. Latterly, when we reached the age where house party’s/pubs/clubs became the norm, I embraced this but would drink heavily and would only feel comfortable having a drink to sip on in social situations. I have had various jobs and am on course to complete my third degree at university later this year, however in all that time I haven’t ever made a single friend that I have managed to maintain contact with after leaving said jobs/courses. My two previous uni courses I had one friend on each, but on both occasions it was them who reached out, whilst I awkwardly accepted their advances, deep down really wondering why they even wanted to hang around with me. Similarly, I had one friend from a previous job who I have no idea where the friendship arose from and I just sort of went along with it, without really feeling any sort of deep connection with them. 

Generally I feel very awkward conversing with people on a day to day basis and will often struggle with awkward silence, or what to say next. I can initiate conversation at a very superficial level, “hi how are you? What did you do at the weekend?”, however maintaining the conversation or going beyond this really basic chat is a challenge and I often feel very embarrassed answering their questions, as I feel they will think I am weird or boring or have nothing interesting to say. I did recently have someone at work tell me I “fly under the radar and play it safe”. Another scenario I can recall is sitting getting a haircut and feeling incredibly tense and nervous about the fact I wasn’t talking, to the point my back was covered in sweat when I stood up.

The eye contact thing definitely resonates with me in that I can make eye contact with people, but I will be constantly in my head trying to manage when to look someone in the eye when I am talking with them and how much is too much. I also think when I am talking myself I tend to look away from the other person, or if someone is explaining something to me, I tend to look at the ground, or in to the distance.

One of the things we discussed today was the fact I have always had jobs where hyper-focus is helpful and I have been known to immerse myself in reorganising the workspace, one example of which was in a very large department and did this work almost completely on my own. 

Conversely, in my home life I often put off tasks like cleaning, tidying, laundry etc because I often find myself far too drained or exhausted and simply want to use my spare time to recharge. Despite this, I crave order at home and can often become quite distressed when things aren’t clean, tidy or the way I want things to be, which has caused friction in my relationship. This distress just makes it more likely that I will put off doing the task and sometimes it feels impossible to even start.

My current relationship is a huge reason I started seeing my current therapist, as I have been feeling very overwhelmed thinking about committing to a serious future with her, much of which I think stems from the fact I constantly feeling like I am trying to maintain order and control in my own life and the thought of sharing responsibility for a home and a family with someone else who may see things differently feels very daunting. I have only had a small handful of serious relationships, each of which lasted less than two years. My current is the first to move beyond this point and the first time I have lived with a partner.

I am constantly worried about the future and have this need for everything to be right and for everything to play out the way I want, to the point I will stress about every possibly outcome.

Its difficult to really express everything that goes on inside my head which has led to this, but talking to the therapist today it just felt like the penny had finally dropped and so much of my behaviour finally made sense. I have spent most of the day on a bit of a deep-dive into ASD, but I still have more questions and answers. So much of it I identify with, but then some other areas not so much. 

I guess I just wondered if everything I described resonates with people on here.

  • The workplace culture is one of my biggest bugbears. It is a system which is disproportionally unequal, a kind of sociotype monopoly. Lives are often made easier for those who have an easy life.  It requires large numbers people to walk blind into it for it to function like that. This coupled to the the constant camoraderie/banter which allows those vampire types to filter and sort those who they believe to be allied to their beliefs.From my perspectice seeing it for what it is, it is mostly a performance, but if I engage- even If I am civii, work hard, perform well. I do not progress.

  • Hi Pietro

    Thanks for taking the time to offer your thoughts. A lot of interesting points. I really resonate with what you say about bringing your conditions of control into the workplace. It was a constant source of frustration for me in my last place of work, that I would put so much time and effort into making the place more ordered and organised, only to come in a couple of days later and the place was a complete mess (to me I suppose). I couldn’t understand how people could function effectively under those conditions.

  • Hi Desmond 

    That’s must be awfully difficult to deal with. Take care of yourself.

  • Some of these things resonate Spidey.

    I suppose if I am completely honest, I don't like going out, at times I feel threatened. 

    Relationships at that age (35-36) I can remember similar feelings, this was based largely around the idea that I had to make my girl friend happy. Looking back I can see she was of the age where she felt pressured to do those things, so that burden was also placed on me. It was the biggest stressor in my life at that time and made me realise that a lot of people want what everyone else has (even if that is a fallacy), it highlighted I needed to take care of myself more, rather that pandering to someone elses ideals. As for a creative minded person following the herd mentality can be very damaging.

    Control and order (organisation) is good. So long as you have awareness and maintain all of the parts. I can give the example, my life is relatively stress free now but I still have to earn a living. Its hard to bring my conditions of control into someone elses workplace or integrate into others ways of doing things. Some people are more selfish than others but everyone has their own ways of doing things. Its just that with NT these sync a lot bettter with most other peoples ways of doing. My approaches are from a borderline 'why are we doing it like this?' perspective. So I don't see any security in surrounding myself with people who are thinking the wrong way, and believe there is safety in numbers (and that one day someone will come up with a solution). In short I see workplaces, industry, social support systems as failing. I think a lot of nD people struggle to get their head around how people can normalise systems which are either fundementally flawed or simply don't work.

    So what you are describing more generally in all these areas sounds like it is you trying to adjust others ways of doing things to your own terms. Which is something that can never fully be resolved, because they are opposed. 

  • My Father was killed in the 'Troubles' whenever I was ten, and my brother was only six-months-old. That lack of mentorship, gradually, hit me for six. But, I'm picking up the pieces now.

    Even, today, I was up early. Then had a busy day. Now feel spaced out, and reluctant to quit. Regular fuction is out-the-window for me.

  • Deffo relate to being unkempt, at home, and not coping well in Pubs and Clubs. No tact. I'm a lone-wolf by nature.

  • Thanks again for your insight Catwoman. It is indeed difficult to recall how I was as a child before my dad’s death, however I have managed to recall a couple of things. I can specifically remember as a toddler running around and shouting this phrase repetitively. It kind of became my little catchphrase at the time which everyone just thought was cute.

    Then slightly older but I’m almost certain before my dad died, I remember repetitively saying the name of a prominent politician from the time, over and over (strange for a child under 10 I reckon). I had made it into like a little tune and would pace up and down repeating this into myself like a metronome. I can actually remember doing this in the canteen of a hospital, but I can’t be certain whether it was when my dad was in hospital before he died, or my brother because he had health issues at the time also, but obviously it was a time of stress for me as a young child. I generally remember talking to myself a lot when I was younger and I am certain there were more examples of this repetitive chatter but the only other examples I can think of right now were after my dad’s passing.

  • I think a lot therapists will pick on your Dads death as a starting point as its a major traumatic event, you were also at an age where you're mosre likely to start noticing things about yourself and the world around you. If you started noticing that you were a bit different to other children of a similar age and then you Dad died, they may well have got muddled up like a ball of wool a kittens played with. It sounds like with many of the knots undone you can now see that there's two seperate threads to this knotted muddle, one you increasing awareness of difference, possibly autism and two your Dad's death, hopefully you'll be able to seperate them, if not entirely then enough to deal with them as seperate issues and possible autism as a seperate thing altogether.

  • Hi Inner Trails

    Thanks for your input.

    I have started noting how I feel after being in different environments and I’ve definitely noticed a lot of stuff which fits with autism.

    Today I was in visiting a relative in hospital and noticed the rhythmic repetitive movements again. I also found it very difficult to focus on what my relative was saying whilst there was another conversation going on in the room while a nurse helped with another patient. My gaze was kind of fixed away from my relative and it was like I was trying to absorb both conversations at once.

    When I left I noted how I felt quite stimulated and was needing to deep breathe slightly to bring myself back down. 

    Like you say some of this overlaps with anxiety, so that’s why I think it will be useful to start tracking this stuff regularly. 

  • A lot of that sounds like anxiety too and hopefully you will be able to find relief from these with better structure and support…. It can be difficult to really eliminate anxious soothing from autistic stims but of course your psychiatrist will have helped you with that or will have identified the difference… 

    yeah the clutter is a big one - that’s why the headphones help massively 

  • Hi Cinnabar

    Thanks for sharing. I’ve caught myself doing so many little repetitive movements when I’ve felt tense or uncomfortable. Perhaps a telling sign is that tonight when on the couch watching a movie with my partner and the lights off with just the dim light from a candle I wasn’t doing anything at all really. Maybe a very slight clench of the jaw but I was definitely a lot more still and less tense.

    Ive also been thinking about my childhood and I can recall a few quite odd phrases I used to either run around saying (when I was a toddler) or repeated into myself quietly when I was a little older. Quite often I’d turn them into a bit of a tune also. 

    Right now I feel like so much of it explains everything I’ve been struggling with for as long as I remember, but it would just be nice to know for sure that this is what I’m dealing with.

  • I really resonate with this description of thinking, 'I don't think I do these' , when you read about the big things, but once you know about it, you start realising that yes you do do things, you just never noticed before and didn't know they were a thing!

    In my assessment it was noticed that I was doing things like rubbing my feet together and that I rub my fingers together. And when I had to speak to them on the phone I realised I was rocking back and forth -I try not to use phones as they've always given me a lot of anxiety, so I didn't realised I did that. I also didn't realise it was called anxiety - it feels a little silly but it was such a base line from going to high school onwards, I thought it was normal part of growing up. At home I sometimes need to calm myself by drawing abstract patterns repeatedly. 

    The sensory thing too, I thought -I don't cover my ears with my hands when my husband is hoovering so that can't be right, but there are tons of noises that do bother me, I've just learned not to react, or find ways to make it easier. I get visually overwhelmed a lot on journeys where I'm a passenger and get so tired I have to shut my eyes (not when I'm driving though, as then I'm on hyper-aware then 'crash out' on the sofa afterwards). 

  • Hi Catwoman,

    Thank you for taking the time to read and reply.

    I get the lecture thing. I can talk at length and very articulately in a situation that involves more structured communication like when I’m speaking to my therapist. Also when speaking one to one with someone I’m comfortable with like my mum or my partner I can speak very logically about what goes on in my head or my behaviour, I can talk in great depth and with some confidence. Even interviews I have always been able to perform well because I have prepared ahead of time what I will say. Small talk on the other hand, I struggle to go beyond some well rehearsed questions that I will ask of others and when the focus is on me, especially in a group situation, I feel how you describe wanting the ground to swallow you up.

    I did the Autism Quotient 50 question screening test and fell within the range of scores which would suggest assessment is appropriate. As for talking this through with my therapist, we only really discussed the possibility that I am describing some recognisable traits towards the end of the last session, so it’s something which we will need to pick up on next week when I go back.

    Regarding my dad’s death, I have discussed this in great depth with previous therapists and come to quite a detailed understanding of how this will have impacted me and spent a great deal of time trying to process the grief it caused. However, despite this I have always felt there was something more than this that has gone under the radar because I have constantly struggled to get my life in order and have this constant cyclical pattern of feeling ok for maybe a week and then just becoming so overwhelmed and wanting to shut myself away. The burnout thing really describes this very accurately and is something my therapist spoke about. I hadn’t really heard of autistic burnout before that, but it really resonates with me. I always felt a bit stupid when therapists or health professionals in the past have asked “how long have you felt like this” and I say “my whole life”, I feel like internally they are expecting me to say a few months or a few weeks and when I say that they probably think I’m a bullshitter.

  • Yes it resonates with me, none of have every symptom on the list of possible symptoms, this is why its called a spectrum disorder, some of us will have some stuff that effects us very badly or very mildly, sometimes it will depend on the situation, like I could stand up in a room of strangers and give a lecture, as long as I was prepared and knew my material, but if someone raised to toast to me for something I'd want the ground to open up and swallow me, I'd be that embarassed at being singled out and feel terribly unworthy.

    There are a few stereotypes about autistic people, like that we're all brilliant with tech, or we have little empathy, when often we have to much. There are a few online tests you could do, has your therapist suggested any routes to diagnosis?

    As for your Dad dying when you and presumably he, were at such a young age is bound to have a huge impact on you, maybe you had to grow up to soon, maybe the whole concept of death was one you'd never really heard of before? I may make you fear permanence, in case it's snatched away from you so suddenly again?

    None of these things will make you autistic or not, you could be looking at two completely diiferent issues here, one your suspected autism and two your Dads death and the effects it had on you. But don't think, that that means two problems to solve, it means a different approach to the work on your self development that you're already doing and the possibliity of finding more peace of mind.

  • To add to my story above, there are certain aspects of autism that I just couldn’t identify with which over the past couple of days have actually become more apparent in my life. Things that have been part of my life for as long as I can remember but I didn’t really know they were a sign of autism.

    When I read about stims it talked about quite overt movements like hand flapping etc which  just didn’t identify with. But I have been picking up on repetitive movements that I do very subtly and have always done, but just never really considered why. Rubbing my teeth together in a rhythmic way, often following the pattern of a tune I am looping in my head. Then I went out for coffee today and found myself swaying while waiting for my order, tapping my feet against each other, then when I sat down I immediately start bouncing my knees. Then when I clocked it and stop doing that I am playing with the sticker on my coffee cup, rubbing at my thumb with my fingernail, then I start shaking my foot side to side, scratching at my car key in my pocket. Each one I pick up not long after I stop doing the other.

    All the while I notice I have this general feeling of unease, my head feels almost this numb way and I have tension in my chest. I have always had that feeling of unease pretty much existing anywhere I go, but always just thought I was just a really anxious person. However these repetitive movements are definitely done in a soothing way and are very rhythmic/repetitive. 

    The other thing I didn’t really identify with was sensory overload. I didn’t really identify too much with finding light or noise overstimulating, but I read somewhere that household clutter or general environmental clutter maybe in the workplace etc can be a form of sensory overload? I get so irritable with clutter and I have upset my partner so many times with my reaction to it, but I was explaining to her last night that it’s like my brain just can’t function properly, almost like it causes a kind of white noise just looking at it and not knowing where to begin sorting it out. However, my experience today in the coffee shop kind of feels like a milder version of this, causing that general unease without that kind of mental paralysis, so perhaps the sound/light thing is there under the surface too.

  • Hi Sharon. Thank you for your reply and the resources you have provided. Some of them I had read through already, but the others may help also so I will take a look.

    Thanks again!

  • Hello spidey
    Welcome to the Online Community. It’s good to have you here.  So much of what you’ve described will feel very familiar to people here. 

    Realising that things you’ve experienced over many years might finally make sense can lead to a mix of relief, questions and uncertainty. You’re definitely not alone in that.

    You might find these pages helpful as you explore things further:

    We've a great guide to energy accounting: although its's part of our Resources for autistic teenagers webpage, lots of adults have said they find it helpful: https://www.autism.org.uk/advice-and-guidance/topics/resources-for-autistic-teenagers

    I hope you find this a supportive place to ask questions, share experiences and take things at your own pace. 

    All the best,
    Sharon Mod