Disappointment

I expect a lot from myself, and hence everyone else. I expect everyone to treat me how I treat them. No matter how many times it doesn’t happen, I still expect it. I never learn.

I have been heavily disappointed by someone forgetting my birthday. Not the fact of forgetting, but the fact of not trying to remedy it after, as I would. I would buy a belated card and present, but that hasn’t happened, and it’s hugely disappointing, like I don’t matter. I know this is not the case, but it feels like it.

I’ve disappointed myself in many ways: wasting money primarily, listening to people who said I couldn’t do things. I guess you learn and move on, but sometimes it’s difficult.

Endings

I hate ‘endings,’ especially if someone leaves and I think I may not see them again. I say ‘endings,’ as I have thought I might not see people again, then they have popped up out of the blue. I struggle massively with good byes. I have such emotion, it is overwhelming.

A colleague and friend, who I have known almost a decade left recently and moved quite far away. This almost broke me. The fact that I hate change is also mixed in there. I know it will pass and I will get better, but wading through sorrow is not my idea of fun. I sometimes wish I could accept things more easily, but then I wouldn’t be me. I will just plod on, getting on with my own life and if I’m meant to see them again, I will. Plus, there is messaging, etc. to keep in touch.

My Grandma always said things would work out for the best and I cling to that at times like these.

Liar, liar

I recently bought an item online from a marketplace-type page. It arrived and wasn’t as described, so I contacted the seller to ask for a refund. She refused. I was incensed, not at the loss financially (although that would have irritated me), but because she was basically calling me a liar. I tend to avoid lying because I hate it and I can’t remember the lies anyway.

I would tell a white lie to spare someone’s feelings (does my bum look big in this, anyone?), but I really try to avoid it otherwise. It’s just not worth it, and I appreciate the truth from other people.

I have opened a paypal case to recoup some of the cost, but there is nothing I can do to remove the ‘liar label.’ Like many ASD people, I am driven to do what is right, and that isn’t.

Another, more serious time in which I was labelled a liar, was years ago at a Wedding. I was accused of coming home late to delay a family Wedding. Even if I hated this person, I would never do that. It is more my style to secretly hate them and seethe by myself (I didn’t hate them by the way). Someone told me the wrong time when I should return to the hotel and that was seen as a deliberate action to stop the wedding, even though the person who told me was notorious for forgetting (their response was, ‘maybe I did forget,’ which did nothing to help matters). This is because someone from the other side of the party didn’t like me and it was a good excuse to throw me under the bus. To this day I don’t speak to them and there is no way for me to clear my name. It’s annoying, but there is nothing more to be done. I was kind of forced to accept the fact that many people who attended still think I am a liar.

‘Unacceptable’

Unacceptable/ not good enough/ other is how I felt growing up; how I was made to feel. I think the worst thing about undiagnosed ASD for me, was being unaccepted by people because I clearly was not ‘one of them.’ It was even worse because I thought it was my fault. It wasn’t. I think an early diagnosis would have helped me so much. School knew something was ‘wrong’ with me, but didn’t know what. They sent me to see child Psychologists (at least I think this is what they were, I don’t remember being told). They just tried to make me look at people and talk more, which didn’t help. As an adult, the Clinical Psychologist asked me if I had seen CAMHS (Child and Adolescent Mental Health Services), and was shocked when I didn’t even know what that was.

The traits that stood out were my monotone voice with people I didn’t know, and the fact I felt the need to write extensive detail of a film out after I had watched it, in case I forgot any part.

I did have short spells of friendship with a few people, but the majority of time was spent alone. Thinking back, if I had 5 lessons per day, that’s 5 times of sitting alone, silently being ‘told’ you’re not good enough. That’s 2 break-times (per day) of standing still in the playground alone, silently being ‘told’ you’re not good enough. That’s 2 PE lessons per week, being chosen last or next to last every single time, silently being ‘told’ you’re not good enough. That’s 37 times per week, silently being ‘told’ you’re not good enough. That’s 39 weeks x 37 times = 1,443 times per year, silently being ‘told’ you’re not good enough. This was not balanced by anything good at home (in fact it was vastly amplified by a family member with an undiagnosed mental disorder) so that’s approximately at least 1,443 times per year where I felt substandard. It kind of gives you a clue why the rate of suicide in autistic people is so much higher than in the general population.

I believe ASD majorly (and ADHD with the recklessness) contributed towards this pain being dealt with by buying what I wanted and continuing to buy what I wanted. Hence, I spent all my spare money and found it super-difficult to save (I did save at the beginning of my employment, but the buying worsened as time went on, so I eventually spent all of it). It was a pure miracle I didn’t get into debt. I wish I had had a better way to survive, as I am still dealing with the repercussions, but if it hadn’t been spending recklessly, I probably would have been abusing drugs/alcohol, and I might not be here.

Time for change (or not)

The Asperger/ASD part of me hates change with a passion, yet the ADHD side gets fed up of the same thing. For example, I will eat the same thing for a week, then I need a change.

The reason I don’t like change is because it’s uncertain and uncertainty causes anxiety. Controlling my environment is a way to reduce this anxiety. However, it’s difficult to do if you live or work with other people: there has to be compromise. The ADHD side gets bored very easily and wants a change, but only within narrow parameters that I set.

I like to know what is happening in advance and if something changes from this plan, it can really throw me (especially at work). I can deal with small changes, like a last minute stop at the shop on the way home for example, but in general I need to know what is happening in advance. When I plan to go on holiday, I have to plan an itinerary in advance, as I need to know what is happening and I want to cram as much sight-seeing in as possible.

When I went on holiday with an ex pre-diagnosis, it was my birthday over the holiday. I expected my ex to pack at least one of the presents, from him and his family, for me to open on the day (they had bought presents for me previous times). They had asked him what I wanted and he said just to give me money. So I had the money in euros, which I had to spend before I got back, or lose some in the exchange. If he had told me a couple of days before, I could have put it towards my half of the hotel. I was very grateful that they had got me anything, but because the money was unexpected, I had been looking forward to opening something, and I felt ‘forced’ to spend it in the next few days of holiday left, it bothered me. I didn’t have a clue about ASD so I couldn’t explain why I was unhappy. I was unhappy because it was a surprise, even if a good one.

I really also struggle with people moving my things at work. It annoys me so much, I could happily give them a good whack (I obviously wouldn’t and am not advocating that). I know it’s not really a big deal, but it is to me. I feel like a small child in finding things like this really difficult to accept, but it’s not that – it’s ASD. It is difficult to deal with these irritated emotions at work, but at soon as I arrive home, I try to use distraction as a technique to make me feel better eg. watching a program, or listening to music. I also like gardening: I find digging therapeutic (digging plants in or weeds out). I never thought I would like gardening, but now I have my own, it really calms me down. I suppose the trick is finding a past-time where you can ‘zone out’ for a bit. Also speaking about it to my partner helps.

Autistic Burnout

TW: suicidal thoughts

This is when physical and mental exhaustion culminates in reduced function and reduced tolerance to noise/sounds, etc. It is usually as a result of masking: learning neurotypical behaviours and hiding neurodiverse behaviours in order to present as neurotypical.

I went through this at around 22 years old, although I didn’t know what it was at the time. I was unemployed and had just come out of a bad relationship, and had just finished University (this had been super-difficult in terms of living on my own for the 1st time, massive changes, and just not fitting in or having real friends at all). Those three factors tipped me into autistic burnout.

I was severely, and I suspect, clinically, depressed. My anxiety was through the roof. I was in so much emotional pain; I just wanted to die. Luckily, I was too scared of messing suicide up and ending up in a worse state, so I didn’t attempt it. That didn’t stop me thinking about it all the time.

I thought I would never get a job, and never find anyone else. Obviously my RSD (see previous post) kicked in in a massive way. I don’t take rejection too kindly. I couldn’t function properly or really do much. I made rare trips out to a coffee shop with my Grandma: these were the only small pieces of normality. On top of this, I signed on, so had to attend the Job Centre every other week. That was absolutely soul-destroying and made me feel even more like scum. I also wouldn’t see the Dr., as at the time I had applied for a job at a hospital and they had asked for access to my medical records. I don’t think they ask for this any longer, but there was no way I wanted a potential employer to have access to that, so I just tolerated it.

I did eventually get agency work, which led to permanent work elsewhere and I did end up meeting someone. This gradually pulled me out of the pit I was in. I was very fortunate things worked out that way.

Self-acceptance

Along with an ASD diagnosis at 34 years old, came the self-acceptance I had been waiting for all my life. Prior to that, I had come to despise myself: for being ‘weird,’ for somehow not knowing all the unwritten rules everyone else seemed to have the handbook for. It hurt: being fundamentally different fucking hurt. I was wrong, or that’s what everyone told me. A diagnosis provided me with ‘proof’ that I wasn’t wrong; it was the ASD which was causing (some of my) problems.

Self-worth

Due to the way I behaved (due to Aspergers – no eye contact, poor communication skills, etc.), many people treated me badly.  I was frozen out at school and bullied a little.  My relationship with my parents was not good.  I only really had my Grandma to rely on for emotional support.  She listened to me go on and on for hours on end about all my worries and she did not once complain about it, which is medal worthy!  I realise now I must have been sapping the energy from her, but at the time I was so unwell I didn’t know.  I wish I could go back and spend just one day with her.

Anyway, due to the way  I was treated at school and my parents’ emotional abuse/neglect, my self-worth was almost non-existent.  A boy at school got a girl to tell me that he fancied me.  I replied to her he didn’t, fully believing the ‘fact’ that no-one could ever like me because I was unlikeable and ultimately unlovable.  My heart fucking breaks for that girl.  I’m much older and wiser now and do have self-worth.  It has taken age and many therapy sessions to reach this point.  It’s a sad fact that many kids grow up in this way.

It is vital healthy self-esteem is nurtured in childhood.  I can only guess what my life would have been like if I was raised this way.  Lack of confidence has held me back in so many ways, especially in my career.  It’s done now and I can only forge on, but I want to highlight how essential self-worth is, as it becomes buried under ‘life’ and almost forgotten.

Emotional Dysregulation

Emotional dysregulation (unable to properly control one’s emotions) is a big problem of mine.  Things that seem simple to most people can tip me over the edge.  I will avoid an argument if possible, as I hate confrontation.  Yet as I have gotten older, I am more willing to stand my ground.  Although they do say you have to pick your battles.  So I am picking mine.

Due to my ADHD, I often forget my argument, so I am hugely ineffective at arguing.  I only really argue with my boyfriend and seldom at that.  However, when the proverbial hits the fan, I suffer – really suffer.  It feels like it’s the end of the world and there is almost no point in being alive.  I feel the need to scratch my arms with my nails in order to focus on physical pain, to relieve the emotional – a poor man’s cutting (I am far too scared to get into that, thankfully).

When I get overwhelmed with feelings, I have to make it stop.  This either comes in the form of a shutdown or meltdown.  Shutdown, for me, is not speaking unless spoken to: I feel like there is nothing for me to say.  A shutdown is akin to a robot shutting down and meltdown looks like (but isn’t) a tantrum.  Meltdown isn’t a tantrum to get your own way; it’s being pushed too far; too overwhelmed that I cannot take anymore.  Meltdowns are supposed to be uncontrollable, but I can pause them for a few minutes whilst I go and meltdown in the toilets at work, rather than in front of coworkers.  The level of upset is very difficult to control – I can’t just turn it off – it has to come out asap.  This is in the form of silent crying in the toilets if I am at work or regular crying at home.

The level of stress a meltdown causes is huge.  Meltdowns are far more prevalent than shutdowns: shutdowns happen when I am in front of people I don’t know, but ‘trapped’ there (in polite company or if I can’t escape at work).  The day is usually ruined and maybe even the next day as well.  Ruined usually means heavily depressed, feeling as if there is not much point to life.  As is probably obvious, I avoid meltdowns as much as possible.  This means I am far too agreeable and a ‘people pleaser.’  I always wanted to be a person who just said what they thought and didn’t give a shit, but here we are…

Alienation

I first knew I was different when I moved to Junior school (around 7 years old). My best friend from Infant school didn’t want to be friends anymore, which was fine; her decision. At 7 it hit me pretty hard, especially when it was sudden and no-one else popped up to fulfil her role. So every break time was spent stood on my own in the playground. These were the days before mobile phones, so I had absolutely nothing else to do but stand still. This just alienated me even more. I was just the weird one with no friends. This persisted pretty much throughout Secondary school. There were a couple of people I had as friends for a while, but they always used to disappear and cut off communication at some point.

You can imagine how this slowly files the self-esteem right down. Especially when you have no other reason than it actually is you: you are the problem, or so you think.

Teachers at Secondary school were astute enough to recognise something was wrong, so I got to see two Social workers every week. This really didn’t help, but to be fair, Aspergers was only just being recognised as a diagnosis and they were not Doctors. I think they just wanted to make sure I wasn’t getting abused, as I was selectively mute at school.
The kids made my life hell, as you would imagine. The worst thing was standing in a queue, waiting to go into a lesson, or at break time, as I was stupidly over self-conscious and did not know how to stand or where to put my arms. I tried to keep my face in a neutral mask, which didn’t work. Everyone commented on how unhappy I looked. No shit, it was a fucking living nightmare. The worst thing was not that I was bullied, but frozen out of everything, like I didn’t exist.

I didn’t have a boyfriend until I left school, as quite understandably, no boy wanted to be associated with someone with so many issues. I was lonely; it was horrific. Every Friday and Saturday night, stopping in on your own whilst you know the other kids go out all the time.
As a kid, I actually sometimes wondered if I was from Mars, as I was so different. Turns out I had a genetic neurobiological difference in Aspergers (now Autism/ASD) and ADHD, but I had to wait 35 years to discover that. It would have helped tremendously to know why I was this way at school, hence raising awareness with this blog.