There are a number of issues that come up when talking about labels and diagnosis. One of which is the process of diagnosis. How does one accommodate that new label? What does it mean for them? What did they go through? Where are they with it now?
In terms of the experience of acquiring that label of ASD / Neurodiversity, each one of our journeys are different, as well as "coming out" in terms of being queer. There are 2 experiences at play:
Stages of autism realisation meme on Instagram.
In the process of appropriating that term - whether something around gender / sexuality or autism - there is invariably the question of: if I am taking the term, am I allowed to take the label when I "should not be having it"? Am I entitled to it? There is a lot of judgement going on. This can be problematic. On the one hand, some people can be discriminated against for being autistic or queer. There is anxiety around taking that label and around how others might respond to your adoption of it. On the other hand, other people are envious and there can be a misconception. The label might not be fun!
If we are taking that label, part of that process is saying "my issues are real" or "my experiences are valid". When you have gone through a lifetime of experience where you have been negated or denied, e.g., people have asked you such questions as:
To go from accepting the above to suddenly saying that all of the above is wrong (societal imposed norms) and that my experience is right, is a massive leap.
What has been my experience? In terms of my sexual preferences, I "came out" twice. When I was 18 (see Andy) and again when I was 32 (see Avi). In both scenarios, the issue was not to do with my sexuality because I am already comfortable with that. The issue was to do with rejection (or, at least, perceived rejection) in terms of how I chose to interpret it and how I processed it. The fact that both were guys and not girls was neither here nor there. There was a deeper issue of validation. Of course, there were similar situations earlier on where the love interest was a girl. I am not 100% sure if I felt the sense of "rejection" any deeper or whether those earlier experiences might have compounded and contributed towards my acute dissatisfaction in myself. A piece of Spanish homework which I am unable to retrieve snapshotted my projections / predictions of Loneliness during my teens.
My parents found it hard to talk about my sexuality. They buried it down. They conveniently forgot. I went through the process all over again 14 years later. I suppose that I have never been open about my sexuality, though. Perhaps because I do not see it as a major "issue". One cannot be blamed for forgetting about it if I hardly mention it. Nevertheless, my sexuality has always been a somewhat lesser challenge.
The most challenging aspect of my autism is the fact that it is not diagnosed. I relate to all of the questions / difficulties described in the 4th paragraph about appropriating the term. I have struggled between wanting to embrace the term and respecting an NHS decision that was made about me. 4 years ago, I was assessed for autism. I scored above the threshold in 2 out of 3 assessments. I needed 100% to qualify for the diagnosis. The clinical report explained that there are elements of my personality suggestive of the condition and that more reasonable explanation might be sought via alternative diagnoses. Such as a deep-seated Social Anxiety and issues around sexual identity. Both of which might be explored further via CBT. 3 years later, my care worker at the CMHT (Community Mental Health Team) pointed out that the fact that I did not qualify for the diagnosis is irrelevant. I have a clinical report. I am entitled to use it. It is no employer's business to know that I was not diagnosed. The important fact is that I have that clinical report and that I am entitled to use it. This advice came from a clinical mental health specialist working for the NHS (Lambeth North Short-Term Service). I ensured that I wrote it down. Ever since then, I have ticked that box labeled "disability", even though I personally no longer perceive my autism as a "disability". More on that story later.
Read More: 07/02/2020
My sexuality (or sexual preferences) has been less of a challenge. I have never accepted the word "gay". I have talked about "straight" experiences, e.g., when I was a student, I had a "one night stand" (if you could call it that) with a woman called Lindsey. She offered me sex but I could not bring myself to do it. This does not draw away from the fact that there is definitely a bit of "straightness" in me! Generally, I reject labels when it comes to my sexual preferences. Alternatively, I might describe myself as sexually "agnostic". I approach it in an open-ended way. I love who I love, regardless of their gender identity. For me "LGBTQI+" is more about freedom of expression at a wider level than mere sexual or romantic / amorous choices.
How do I manage to circumvent the minefield of language and labels among LGBTQI+ circuits? I buy into the belief of creating one's own reality but being open to other people's realities at the same time. That is to say not one reality being the definitive "truth". When I encounter people at the Meetup events, I am occupying the space with words but at the same time ensuring that I am open to other people's words and that there is a level playing field. And making my own internal judgement about whether or not I wish to fully endorse or embrace other people's words (feel free to disagree internally, but not necessarily state my disagreement unless the question is asked or my stance is challenged). I ensure that I use disclaimers e.g., "that last statement might have been a bit binary". Always remaining mindful that I might be acting judgementally and correcting myself where I feel that it is appropriate (I hate the word "appropriate" so I am using it loosely, here). But without acting apologetic all of the time. It is a difficult balance. I feel like I am spinning plates. Most people act cool and acknowledge that it is complicated to know which language to use in certain settings and situations. So it is not normally a problem. There is definitely a balance to be had. But I can set that balance within myself in terms of what I choose to say and how I choose to act.
Invariably, labels are trying to concretise something that, in essence, does not normally fit into a box, e.g., the label of Neurodiversity. Yes, absolutely, I can call myself autistic if that is how I choose to interpret my assessment. I am entitled to feel a sense of belonging within that category. The diagnosis of autism is the best effort to appropriate something that cannot be appropriated. That is the real struggle. The diagnostic criteria is by no means perfect. It is never going to be perfect. It is useful. But it will never account for every condition, perceived internally, externally or otherwise. It is tricky for us to allow ourselves to feel that this label is right for us when we do not specifically fall into that box.
In gender and sexuality, language is massively expanded. Previously, there was limited language to express all of the different genders and sexual preferences. There was plenty of "I am not this" and "I am not that". With autism and Neurodiversity, there can be the added feeling of wanting to be accepted in society and wanting to fit into the right box (whether a self-imposed feeling or otherwise). There are labels and terms that do not quite fit. Lots of people might feel like they are not getting it quite right. These are the difficulties in labelling. The fact that there can never easily be a uniqueness within one particular label.
What labels were offensive / upsetting ways of describing me? At Marling school, I was bullied. The students called me "batty boy". They said that my mind was "addled" by Wycliffe (I did not see this to be the case). The teachers commented that I was "naughty" and "oversensitive". For them, it was an issue of behaviour (on my part). They would say to me "how can you be so smart and yet so stupid?" These were the abusive, damaging ways in which I was addressed by both students and teachers at Marling School, Stroud.
What labels were adopted by myself as a way of justifying / rationalising myself? Later on, in sixth form, people who were more friendly towards me described me as "eccentric". I adopted this word because it sounded more positive. My friend Sarah (the same Sarah with whom I travelled to France) once said that I fall just outside the box labeled "other".
They can be liberating in the sense that they short-circuit potentially tenuous conversations and open up connections with people and spaces. Through shared experiences, they can bring a sense of power socially. This is something that I experienced during Sixth Form. Most of the people with whom I was associating identified as being outsiders or somehow different from the norm. They rebelled against society in the way in which they dressed and the language that they used. There was a shared rebellion aspect at play. Paradoxically, the rejection of the establishment (in theory) engendered itself through the endorsement (in practice) of a label! As being "anti-establishment".
However, labels can also potentially limit the options that we give ourselves and one another. There is a dynamic at play between what we want to perceive and what is perceived. The juxtaposition of these labels and the way in which this throws up so many complexities and contradictions is something that fascinates me. It is indeed both a liberation and a limitation.
There is an interesting discussion:
The word "disability" being used to describe autism is a classic example. In terms of society (or, at least, in legal terms), it is widely considered to be a "disability". Regardless of the fact that autistic people vary in terms of whether or not they think that it is a "disability".
Social Anxiety is another example of a label that can be falsely vindicated. Example of my friend repeatedly saying that he needs to "fix" or "cure" his Social Anxiety. Repeatedly, I tell him "actually, maybe you do not, there is nothing wrong with you." I tell him that he is putting too much pressure on himself to be a certain way and he is fine as he is. It is not the Social Anxiety that is the problem. But maybe his perception of it could be changed. So that he does not perceive it as such a negative condition of worth. It can be managed. He can find ways of accepting or embracing Social Anxiety and turning it into a positive. Too many people see it as "Self Harm". But the only person who can define it as any form of "harm" is the person who is doing the ruminating. No one else has the authority to define their level of pain. Any definition is a deflection of how they feel about the person's Social Anxiety onto the "socially anxious" person. Which is why it is easy to fall into the trap of perceiving Social Anxiety as a negative condition of worth. If this is a common misconception in society and the misconception is all that they have ever experienced.
There is definitely a question of what extent society is the "problem". In terms of its inability to cope or accommodate versus its tendency to normalise and impose. This is the paradox of labels and where the conflict point can invariably arise.
What label would I take as a compliment? How did I come to the conclusion that I might either have autism or be autistic (adopt autism as a label to define myself, to a certain degree)?
It has come to me in bits and pieces. Gradually, I have put together a picture, piecemeal throughout my life. It was a gradual process. That is how I came to it.
Conversations about autism. Because it is a minority, not the "norm" and not in the general narrative, there is a depleted awareness of autism. People need to have a corridor into it. Because it is not in the general narrative, there is less value in society and less opportunity / opening from someone else to give "permission" to embark down that particular route. That is not to say that there is none at all. There is a lot more than there used to be. But it is still less commonly regarded as some other states of being. Many times in the group, it has been said that everyone's personal experience of autism is as individual and unique as the person. This makes it harder to pinpoint, label, define and diagnose.
I grew up with other people who I might have perceived to have had greater challenges than I did. I saw it in them but did not necessarily think that this was me. One of my school friends, MN, was a example of this. My perception of his experience as a greater challenge than mine was due to the fact that he was taken out of school and transferred to a special school that would more adequately cater towards his needs and requirements. My mum was a learning support specialist for over 20 years. She knows all about ADHD, ASD, Dyslexia, Dyspraxia and other cognitive or physiological conditions having taught students who experienced those. She identified MN as having more acute difficulties than me (in terms of the fact that he transferred schools but I did not). While it is not entirely possible to compare and contrast conditions on the basis of which school one attended, it might be considered a pseudo-measurable indicator.
At 17, when I admitted to Holly that was bisexual, she said the best and the nicest words possible:
"Are you comfortable?"
I could not have put it better. It shifted the emphasis from how society might feel about me to how I might feel about myself - which is more important. I have never adopted the label "gay". And that is fine. But the fact remains that this friend said the most healthy words that a best friend could wish for. This was while we were sat outside on the street at a house party.
It is helpful to dissect and delineate what it means to be "gay" or autistic. Language helps to limit, trivialise, reduce and take out the complexity of what goes on. But in doing so, it can invariably lead to the question of whether or not to adopt it as "me". We know ourselves best to know that we are not that simple. There is an ambiguity of where to place self.
Holly was someone who I connected to on a deeper level. We used to have deep, philosophical conversations. She was like a therapist. She had that therapist vibe about her. Someone who was insightful yet caring. Someone who made caring seem easy. I have always tried to emulate that quality that she had. We had an important connection. Perhaps our connection was more than a "friendship" (another label). For us, walking around school together holding hands did not feel like a big deal. It felt natural. I probably had romantic feelings towards her. But I did not care because I was feeling fulfilled from the friendship / relationship regardless of whether or not she reciprocated. That did not matter to me. This dynamic is rare. Despite our estrangement, many times, I have searched for her on Facebook but not found her. And resorted to posting her poem on my website with a note requesting her to contact me if she ever came across it.
It is amazing to have access to those people who you can connect with, who can open up something within you like that. At such a young age (16-18). Some people are angels, put in your life to help you towards certain truths. Labels are not all bad. Holly would ask me what I was thinking or how I felt about a certain situation. She would focus on my response to it rather than the situation at hand. I sent her a suicidal text message. She turned up on my front door step holding a lollipop. People who show up like that when you most need them reveal who your true friends are. For these reasons, I definitely believe in Destiny, Fate and Serendipity. For better or for worse.
There are also generic words that can act as neutral labels, either positive or negative, variant on which context they are used. A classic example is "intense". I often use this neutral term to describe myself. Based on how others (friends and strangers alike) have responded to me and my narrative. There is an anticipation of how people can perceive us which might dictate who we are. There is an added pressure to hone down certain aspects of personality to keep myself "safe". There is a dilemma between authenticity, safety and accessibility. It is a challenging experience to mediate between those issues that not everyone has had to deal with.
Last weekend, I said some crazy things to my friend at the Meetup. I cannot remember what I said. The morning after, I was tempted to message her to apologise if I freaked her out. But I consciously forced myself not to act apologetic. Why should I apologise for who I am? The internal dialogue involved me assuring myself that if it was still bugging me weeks later, I could always casually bring it up in conversation and drop in a disclaimer. But I know my friend well enough to pre-empt how she might respond. "Relax, Rory! You did not say anything that freaked me out!"
At another Meetup sometime in October 2019, CB reprimanded me for talking to Norman about angels, demons and psychosis. "You cannot go around talking to strangers about stuff like that! You will scare them off!" Although she had my best interests at heart, she was effectively speaking on behalf of someone who she did not know. I am a believer of individual responsibility. My view is that if it did freak someone out, they might tell me directly. As it turned out, Norman and I became good friends. He had no problem with some of the things that I mentioned to him on our first meeting about people considering having me sectioned. It is not a big deal for me to be that open to other people about what is going on in my life. Why should it be for them? Especially if they are the ones asking the questions! Besides, why should I lie about who I am for the sake of appeasing a stranger?
[18:45, 19/10/2019] CB: Ok well thats not something you should ever tell Rob or a future boyfriend as it’s freaky! Just focus on the good side of religion
Anxiety is another one. As a social pejorative, it is contextual. As an existentialist, anxiety is not a "disability". It is perfectly OK. Labels that we ascribe to ourselves can be interpreted positively or negatively depending on how we might feel about them in certain contexts.
Honesty is a classic one. Exhausted by the Miz example / scenario, which throws up a load of questions concerning the nature of honesty. What constitutes honesty. People can say that they are "honest" but (in my perception, at least) not act honestly with me. Some choice examples that raise these questions:
Miz: Every now and again I spill the honesty box on mental health.
Miz: Rory it’s been six months and this is harassing me - I didn’t reply, I’m busy, I have various things going on in my life and I don’t need to have to handle you as well.
[08/03/2019, 16:52:39] Avi: I just like to be honest and frank about things
[16/01/2020, 16:22:07] Rory Duffy: If you said I could be honest with you then make such profound judgement of me over something I said that it gave you second thoughts (if that’s what happened, still yet to confirm this?)
[26/01/2020, 22:47:43] Avi: I find this whole situation very distracting and your last message seemed as if you were not even trying to understand. I cannot handle with this.
[11/02/2020, 11:41:43] Rory Duffy: I appreciate the fact that you said you like to be honest and frank about things and I hope you will remain the same.
[04:03, 02/11/2019] Victoria: Cancel tomorrow
[10:39, 02/11/2019] Victoria: I cancelled cos you were the only person
[11:24, 02/11/2019] Rory Duffy: Thanks, we're working through it 😔🙏
[11:57, 02/11/2019] Victoria: You are a shit person
There is a variation in people who lay claim to their "honesty" versus honourable people like my ex-boyfriend JR who described himself as "dishonest".
[18:19, 01/09/2019] Rory Duffy: I never said you cheated me
Actually, in saying that (regardless of whether or not he acted honestly), the act of saying that was honest. He was not giving himself enough credit. There is an overlap between honesty and intensity. These generic terms can be adopted as part of people's rationale / justification. Is it honest when "appropriate to the situation"? Does honesty depend on the context? Is honesty a form of transparency in every sense of the word, or is posting someone's explanation in a WhatsApp group considered "inappropriate" regardless of whether the person (Victoria Wills) showed honesty in her rationale for cancelling the party? There is a widespread disparity and disagreement among different people in terms of how they perceive honesty and transparency. There is a spectrum at play. Ultimately it illustrates that the term is merely a label and cannot possibly account for every eventuality.
Intensity and honesty is something that people have expressed as something that they like about me. How can I justify claiming who I am? And finding that those same people who have expressed their appreciation of my honesty become the same people who act avoidant towards that? And I am not saying justifying via means of one particular scenario. I am talking parameters, here. This junction is difficult. We might start to feel comfortable about ourselves. Subsequently, we face people or society who do not feel comfortable, discriminate or refuse to acknowledge who we are. Often, the exact same people who advocated our identity and sense of comfort in the first place!
[11:54, 02/11/2019] Victoria: Says you
There is a powerful dialogue of wanting to be seen versus not wanting to be seen.
23:26 Rory: It's wonderful to feel noticed
Sometimes, there is a paradox where people say or clay claim to a quality and act completely the opposite (as demonstrated by the above 3 examples). This raises a certain irony or perceived sense of hypocrisy. It is a social paradox. A pertinency of topic. Often, I find myself in a "cul-de-sac" whereby people do not seem to emulate a logical argument or I cannot quite understand their logic, which I perceive to be "twisted". Subsequently, I need to step back because I can no longer engage with it in a way in which is meaningful to me. It made me think about the distinction between disengaging from a person versus disengaging from a situation (Read More: 03/12/2020). The boundary can often become blurred.
Cue the paradox of Victoria enforcing about people being "there for me". If we apply the rule of Reverse Psychology, she was essentially saying that she was not there for me. By saying that, it was a form of disengagement. Effectively closing the door to an open dialogue.
Finally, some labels can annoy you. There are tick boxes in terms of disability, ethnicity, gender, sexual orientation and a number of other categories. You have to go online. The computer forces you into choosing / defining identify in a somewhat narrow set of choices. Computer programmers (data officers) have the power to do that. Shoehorning people into subsets of language.
“To be is to control...From birth to death we are engaged in an ongoing process of control” T. Carey
Having a sense of control is something that human beings want at different levels. One of the key things that makes us feel safe. In terms of safety, for continuing existence. Most people (to differing degrees) want a level of control over some areas of their life. If we are talking in gruesome terms, one of the ways of torturing people is messing around with that. Interrogation techniques, continually moving them or flickering the lights on and off. This puts people in a perpetual state of not feeling like they are in control. It can make people feel anxious.
To different degrees,
Human beings want control.
Working from home (and in an office) entrenches me into certain routines and rituals.
JR: Good Noon, hope the second coffee got over by now
In relationships, there are moments (especially during cohabitation) that cause friction. Areas of control clash or conflict with one another. There is a desire to have a sense of order when chaos is happening.
For autistic and neurodiverse people, having a sense of control is important and more talked about. This links to the idea that autism can be considered can involve a disorder of prediction. "Disorder of prediction" is a theory, the idea that human beings are constantly looking at the world around them, collating evidence and using that predict what will happen next. Absorbing what is happening, creating patterns and trying to figure out and predict what will happen based on changes in environment etc. The differences in autism can be linked to difficulties in the predictive / cognitive process. There is an overarching theory that autism and neurodiversity can result in the difference in the prediction and manifestation of events. One aspect would be difficulties in generalising information. Learning something in one situation and not necessarily feeling able to apply it in another situation.
3 different theories of prediction:
The more difficult that it is to identify patterns, the more difficult that it is to predict events.
Ideas of control. The example of my grandfather deliberately selling his house to put himself at a financial loss. Could this be interpreted as a way of staying in control? That by bringing about the "inevitable", he was putting eventuality on his terms? Seeing it as something that would happen anyway?
Sometimes, I find myself inadvertently predicting the future. Yet feeling powerless to be able to do anything about it. People might feel jealous or envious of my ability to "predict the future". They might view it as a means of being "in control". But the reality is that it can feel like the opposite. It is not something that I feel easily able to control. Multiple times, I have found myself in situations where I think that something is going to happen or unfold in a certain way. Yet I feel powerless to do anything about it, because I have no proof. And I am surrounded by neurotypical people who are enforcing a "toxic positivity" on a situation without knowing the outcome. When the situation turns out negative, I end up beating myself up for being "won over" by the ephemeral words and intentions of other people and not doing something to prevent a negative outcome. This feeling is disempowering. I find myself fighting against myself. To put it in mundane terms, it sucks being Cassandra!
There is an idea of "toxic positivity". I like this term.
For me, it means 2 things:
The results? Not stopping to talk or engage with why it has not worked out well. Happily carrying on, blundering and bumbling through life. Without a care in the world. Not learning from the experience. Making the same mistakes over and over again. Abdicating responsibility. Negating accountability. Not following through or pausing to reflect. An avoidance mentality. All of the behaviours that I associate with what I call "flag waving" and "future faking". The disempowering ideal of leaving it to fate and believing that things will work out miraculously without one having to try. The residual feeling of looking back on a situation as if it were uttered by a different person (even though it is the same person) in a different lifetime. Thinking "what was that all about?" Something that goes against pragmatism and realism. The seeds that neurotypical people have planted in me that led to such a dreadful mental breakdown in 2019. Refusing to take action.
This "things are going to be fine" ideology. Society is plagued by people who impose that without putting in the practical measures of safeguarding that possibility.
For me personally, there is a lot to be said for defining one's own reality. Something that has helped me is to focus more on how I respond to a situation rather than the situation itself. It does not mean that I stop talking about the situation at hand.
I am shifting the focus to:
This way, I am not engaging instantaneously. I am giving myself a moment to pause for reflection. I am not acting impulsively. There is not one set way of interpreting situation. One person's intention can mean something completely different. And who is to define the meaning of that intention? The person saying or doing? Or the person listening and responding?
It is the philosophy of:
If I am choosing how I listen, it puts the control and power back on to me. It has helped me in certain situations. It has enabled me to navigate around my own fears and insecurities.
Like the example of Miz. How I chose to respond to it. I made a conscious decision to not control her actions. Instead, to focus on my response, i.e., not to let myself think that she was deliberately ignoring me. I was tempted to say "well, you might have simply said no". But (apart from inciting anger) that might have been an admission that this is the message that I was drawing from her ambiguous behaviour. In doing so, I might have allowed the ignoring to happen. I made the conscious decision to control my own actions regardless of what she was not doing (responding). I came out stronger for it. Effectively, I did not let her ignore me.
Increasingly, I realise that I am triggered more by my response to something than the thing that is happening to me. By practising mindfulness, I am able to slow down, stop and not act on instinct. It is comforting to know that we retain our own sense of control over our perception of the world.
Last week, I was reading a conversation that I had with RV 9 years ago (April 2012). In which I self-subjugated no less than 4x within 4 consecutive sentences. Back then, I felt insecure and "out of control". Automatically, I demoted myself to a lower level out of a belief that this was somehow inevitable. Not unlike my grandparent's tendency to put myself at a disadvantage from the word "go". Another thing, I remember that he used to feign being asleep so that he could experience a "rude awakening". I do that, too.
[15:54, 29/03/2021] Rory Duffy: Hey JW how's it going? I am a bit confused. I signed up to the M&M Saturday 10th April, did the event listing change to today? Hope you are well 😊
Yesterday, I was confused because I had signed up to a social on 10th April and the date changed to yesterday. I messaged the group organiser asking what was going on. She did not respond. I messaged one of the WhatsApp group members to find out who was hosting. She said that no-one was hosting.
[15:53, 29/03/2021] Anna: Check out this Meetup with [group]
I was beginning to think that no-one would show up. Anyway, I decided to take the risk. The intention was to arrive at the agreed time and place, post a message on the group to say that I was there in order to engineer a situation of being "stood up" by the group. Crazy when I think about it. But certainly a form of control. In which I might be deliberately self-subjugating (playing the Eternal Victim / sacrificial lamb card). To "show everyone up" and assert control by "bringing about" a perceived inevitable. With the ulterior motive to send a message that the group might be "anarchic". And, by extension, might be better off under my management. If I "play out" my line of thinking somewhat extremely.
This is a classic example of me trying to assert control over an ambiguous situation. In the end, a dozen or so people turned up anyway. We had a wonderful time. Before I set out, I asked myself "am I doing this for the right reasons?"
I concluded that if no-one turned up:
I guess that these prospects helped me feel more secure about the uncertainty of the situation. It was a healthy process to put myself through. Practise having that dialogue with myself. It is a positive process to edge myself slightly out of my comfort zone. It was a completely spontaneous decision to attend. Indeed, I had signed up for the 10th April and I was not expecting to go yesterday. But I thought, well, why not? If the goalposts have changed, why not practise "riding the wave" and finding a means of control within myself in the face of seeming chaos?
One of the difficulties of society is people finding themselves caught up in the illusion of "social lies".
Yesterday, at the social gathering, someone said "no-one checks if you RSVP to the event or when / where the event is happening. Clearly. The idea of the group is that you post on there "hey, I am in a park on my own" and people simply rock up".
In principle, it is a lovely thought. But I am cynical. Have I been in that situation before?
Existentialism is about creating your own meaning, deciding your own response and defining your own existence.
Death is the ultimate thing that we have no control over. The concept of death as a natural cycle, as one of the certainties in life that is predictable. It might be easier for autistic people to talk about death. And people who suffer from depression. I have talked about suicidal ideation. How quick people are to either judge someone for having suicidal thoughts, immediately dismiss suicide as a "viable" option or disengage from talking about it altogether. For someone who is experiencing those thoughts, these approaches can be damaging and devastating (and potentially make people more likely to go through with it). Suicide might also tie in with this idea of control. If we talk about our extension of the "sacrificial lamb" ideology as discussed above. At an extreme level. Some people might see it as the only option. They might think that death is out of their own control. Why not bring it back under their control? It is important to engage with the topic and explore the rationale and reasons behind those complex layers of thinking.
When I experienced depression, 2 things happened:
In my darkest hours, the prospect of imminent death was a source of comfort for me above all else. Enveloping myself in the warm shroud of thinking that there was no more height from which to fall. The suicidal ideation became a "shell" or form of protection from the world. Death became a comfort because it became something that was predictable.
Back on the topic of autism, there is a sensory aspect to life perception. Different environments and contexts can feel new and intense. Control and routine go hand-in-hand. Especially for autistic and neurodiverse people. They feel good. Sometimes, it feels nice doing things in a certain way. It feels calming and pleasing. The opposite is also true. When things change, it can feel stressful.
My manager constantly says that I work in a specific way. The way in which I align everything to a grid of 1 inch subdivided by 8. Or right justify number fields. Or my surplus use of brackets in coding. She says that she will not change that. If it works for me. If it helps me to the job to the best of my ability. No-one will argue or stop me from doing that. My current role is in a much more hospitable environment to my previous role at DT where I was discouraged from the natural ways in which I worked. Yes, a lot of the stuff that I do out of habit might outwardly seem "superfluous". Like aligning a new field to the grid and ensuring that it is right-justified, exactly 1.25 inches wide and 1 gutter apart from the adjacent field. Or building a new layout from scratch because the existing layout is giving me "epilepsy". However, it gives me a clarity of perspective which enables me to notice a "weirdness" amongst the order. As my Facebook strapline says:
My role in life is to bring about order from chaos
What does this mean? Routines and rituals are important to me. They make me feel safe. Change is more difficult. Unstructured periods are more difficult.
How do I feel about coming out of lockdown? I am living life "on tip toes". Yesterday, I attended a social. Part of the reason why I wanted to attend was because this was the first social gathering that the group had organised since late last year. I wanted to ensure that I was there. I know that I have a slower social processing than most (as a result of my autistic tendencies) and my main concern is not wanting to feel "left behind". By giving myself a "head start" and a running jump at practising my somewhat depreciated social skills while we are still in March, I am putting myself in at an early advantage for the summer when the picnics might be happening. Win Win. It enables me to feel more in control. In exactly the same way as arriving early to a meeting. Or arriving early at work.
This morning, I arrived into the office at 07:35. Normally, people are not encouraged to arrive earlier than 08:00. Perhaps acting as a key holder and having the responsibility of opening up of the building enables me to feel more in control? Immediately, I heard a ringing sound (not the ringing of alarm bells in my head). I discovered a flood. Oh dear. Immediately, I reported it to the ops manager. I delineated my experience of having found the floor in that state as a way of "putting myself on the front foot" / clearing my conscience. 😇
Control (especially self-control) plays a big part in my life. On my lunch break, I was discussing with my colleague how my target was to reach my goal of 125g protein each day whilst not exceeding my 1,424kcal daily deficit. I had burned X numbers of calories through exercise which inadvertently increased my protein goal. I decided that since I had walked and cycled into work, I had earned that kale, broccoli and pea medley to have with my plant burgers. I calculated that this would bring me up to my target. Micro-managing my diet and nutrients enables me to keep my hands lightly placed on the dashboard.
Control. I must have a plan. What about taking life as it comes? No. Sometimes I do not have a choice! That is the aspect with which I struggle. Giving myself back that choice when "shit hits the fan".
My danger, especially with my ASD and OCD: sometimes, I trip into becoming over-controlling. Particularly of myself. Via projection, imposing my high standards on the outside world. Feeling frustrated when other people and situations do not match up to my standards. Especially if I feel that it is in a responsibility that I might feel able to do better than the person who is in that position of responsibility. Such as my moral standards when it comes to managing a social group. I would never dream of not responding to one of the group members who wanted to come but was confused about why the event date and time had suddenly changed. This is not a judgement of myself or of her but something to be aware of. At the end of the day, I cannot control how someone else runs their social group! I know that I would never run a social group with such a lack of communication. Then again, I might not be so fortunate to have a social group that is popular enough that it seems to "run itself". It is an arbitrary comparison.
My ability to focus in on detail and cultivate a realistic, pragmatic view of the world away from "toxic positivity". My perception of what might be useful or real in the long-term. These are not shared by many. However, I have a tendency to slip into a mode of automatically thinking the worst (either of myself or others). By default. It becomes a Self Fulfilling Prophecy. I must learn to differentiate between the tenses of the "could" and "should". Recognise the distinctions between my thoughts and what is actually happening. Or make a conscious choice between the two. It is a behavioural temperament that it difficult to pinpoint or escape. Back in 2019, I self-referred for CBT / DBT. Although I ended up on a perpetual waiting list, I might have possibly ended up giving myself that therapy anyway. Simply by studying and analysing my thoughts, words and actions. Identifying those points whereby those things diverged from and were no longer serviceable to my deeper interests and desires. How I might have ended up blaming myself or landing up in a cycle of Self Harm and Self Subjugation.
For example, I might have a tendency to start cleaning obsessively. A way of cleansing the outer world in order to purge my inner being. My constant struggle to make things neat and tidy or have things in a certain way becomes an unhealthy obsession. It is worth knowing where my weak points lie. More importantly, it is worth knowing how to manage and accommodate those struggles. There are certain activities where I become more controlling. I drive myself into a spiral. I catch myself in a super control cycle. Whereby I am doubting my own ability to undertake a task because the way in which it is presented to me is haphazard, fluid, random and completely out of control. I start panicking. It is worth noticing where it is hard to keep that "even keel" or maintain that balance when the controlling becomes too much. This resonates with me. My family might think "do we know someone like this?" 😅
On some occasions, I have felt unable to manage a project because there are more details that I want to control than I am able to control. It becomes overwhelming. I end up giving up. I find myself in a state of super control. It is too much. I am unable to cope. I am unable to manage. I abandon the whole project. I hand it back to whoever presented me with the project. Let them do the thinking for a while. While this "washing my hands and absolving myself of ownership and responsibility" is a useful mechanism of preserving my mental sanity, people have sometimes interpreted it as a lack of caring. This is not my intention. It is quite the opposite! I care too much that engaging with it is painful. Thus, I have been forced to find new ways of wording my intentions. Such as: "I cannot possibly give this project the attention and care that it deserves unless you can put it in writing for me". Or "this is so important, and I want to ensure that I give 100%, would you mind please sending me an email?" This process of putting my OCD into words is positive and constructive.
In relationships (both personal and professional), many autistic people end up doing all of the organising. Otherwise, nothing gets done. At university, the guys said "let us form a band!" Yeah, sure. Had I been through this already? I decided to give them the benefit of the doubt and be the most positive version of myself. Guess what? When it came down to it, who ended up doing all of the transcribing, arranging, composing, printing and organising of rehearsals? Me. The process of cataloguing our musical repertoire came naturally to me. I bought matching ring binders. I devised a Logic scoring system of ledger lining and note sizing depending on the material at hand (which I still use to this date). The list carried on. I ended up placing a heavy burden on myself. This led to frustration when the other band members were not putting in the work or giving the project the attention that it deserved. Thus, what was originally a "joint effort" landed on my shoulders and became my problem, not theirs. Simply out of the fact that they were not proactive enough to do the work. Or they felt less inclined to turn up on time because I was the one doing all of the organising. I have managed to overcome that by rejecting the fallible notion of a "joint effort" and ensuring that I carry out any musical project off my own steam. I do it for my own reasons and pleasure. I pay myself more than the musicians who simply learn the repertoire, show up, perform and go home. That way, it enables me to preserve my energy, manage my own expectations and keep the project going for longer.
At the end of the session, we opened up into general discussion for future topics. Some good ones include "Labels" and a "Black & White" approach. These are both pertinent topics for me.
A discussion arose about the "Nature Versus Nurture" debate. This pertains to the above-discussed notions of control in the sense that identity formation is invariably a combination of both. I have discussed my family background but I have also discussed the events in my life that have made me myself. To divide (nature from nurture) plays into the human notion of putting things into boxes.
On some days, I might see my OCD as a charming, endearing aspect of my personality. On other days, I might see it as more of a problem. This is all relative. It is dependent on my mood. How I am feeling about myself on a particular day. Something might happen in life that leads me to question my views. They might force me to re-write my cognitive backstory. That is OK. Cultivating a healthy relationship with myself is a process. It takes time. It will not happen overnight. There will be good days and bad days.
Once again, I come back to mindfulness as a useful tool. Realising that my thoughts are only thoughts. The other day, I was running along. I experienced an intrusive thought about some stupid thing that I might do at a picnic where I go crazy and lose control of myself. This ties into something that we were discussing during the session regarding alcohol, or any toxic substance, or any addiction for that matter (video gaming being a frequent one among people in the group). When I experienced the intrusive thought, I laughed to myself and wondered where that came from. This is healthy. It showed that I am able to master my thoughts and perceive them as mere thoughts rather than as something happening in the outside world. 8 years earlier, I might have freaked out, worried this was going to happen and brought it about by thinking it into existence. I still do that but to a lesser degree than I did in the past. This is hugely positive.
On the topic of video games, we discussed Tetris and how it links into our notions of control. We related to the anxiety-provoking feelings of the stack climbing higher, the blocks falling faster and the music speeding up. When I was 5 years old, I spent my first ever break time marching up and down the school playing field singing the theme tune to Tetris. Why? Because I was suddenly given all of this "free time". I did not know what to do with myself. I did not understand how to play or interact with the other children. I completely shut down. I started singing Tetris over and over again while marching up and down in straight lines. Perhaps this was an early indication of my need for control over the seeming chaos of the temporal-physical world? I can only empathise with my "inner child". Living next to a primary school in Vauxhall and hearing children running around and screaming like wildfire. It is no wonder that I might have felt encroached and petrified at the age of five. Not to mention sensory overload. Birthday parties were torture. The most traumatic aspect was the balloons popping. At several points throughout my childhood and adolescence, I was presented with the opportunity of going "paint balling". Suffice to say, I turned them all down. I am proud of that! It sounds like my idea of Hell. I could not attend firework shows until I was at least an adult. All of that banging and bright light. I could not cope with it. I used to spend those evenings buried in my earmuffs. I could not attend rock concerts. And even freaked out (as a toddler) when we went to the theatre to see Postman Pat.
My care coordinator at the Lambeth Short Term Service gave me the useful insight of identifying which parts of my personality are "doing the talking". She used to say "that is your depression talking" or "that is your social anxiety talking." The therapist at St Luke's Therapy Centre practised a similar technique by describing certain things that I said as "the ASD coming into play". Recently, I have found it a useful process to go over the events in my life and annotate "this was my depression talking" or "this was my projection talking". There is a deeper "ownership" question of how much I accept these behaviours as aspects of myself or aspects as separate from myself - as happening to myself. Taking ownership or making the choice over certain aspects of behaviour. Claiming ownership of certain strands of personality / behaviour. All of the things that make me myself.
Existentialism is about defining myself as the sum total of my actions, my reactions. In terms of how I choose to experience, interpret and respond to the outer world and realise it within myself. What conclusions I might draw? Deciding whether or not to take ownership over certain aspects of personality. Attributing behaviours and modes of thought to certain things like the autism, social anxiety or however I choose to identify. To work through it is an ongoing process. I cannot completely pick it apart. That is OK. It is difficult to figure out all of this stuff. To decide what I would like to claim and take responsibility for.
I must have a lifestyle choice/plan to keep myself stable. Like regular exercise (e.g., GoodGym, or my own gym sessions), not too many late nights, eating properly. GoodGym keeps me outward looking plus getting exercise and meeting up with people. I am waiting to come off Pregabalin before I resume my exercise regime. It makes more sense to not focus on 2 activities at the same time that might be conflicting to each other (weight gain vs. exercise).
I have discussed with my manager and explained the situation with the Patient Access system. He is fine if I suddenly have to give short notice for a GP appointment in the daytime.
I have messages my care coordinator with my dates for March. My care coordinator has agreed to keep me on indefinitely. I am not entirely sure how formal this arrangement is. The "arrangement" feels very informal now. I must have that conversation with my care coordinator. Work out the best strategy forwards in the long-term. Even if I only see her once a month, or even every 6-8 weeks. For one hour. Just enough to keep me on the system. Like a parliamentary "ghost" train (a train that only runs once per day to keep a line open). No pun intended.
I am not sure if I even need it anymore. I am developing strategies to manage social anxiety (although I will not turn down CBT if it is offered to me)
I attended the (free!) LGBTQI Autism Group for the 1st time. Funnily enough, this month’s discussion topic was “Disclosure at Work”! It must have been serendipity.
I have learned about:
I have made lots of notes and written them up.
I was in a dark place last year. The reason that I was in a dark place was not to do with work though. Although the pressures of work did enhance and add to those difficulties.
Can I discuss my difficulties with my manager over lunch or sometime? We might have another review in March? I have my review next Tuesday. I will possibly ask the group leader for some advice and assistance in what to say if he does bring up my ASD again. She has said that I can email her at any time.
I had Listening Place on Monday, which went well. We discussed what happened in October. The listening lady prompted me to explore those events in greater detail. I have written it all up.
LGBTQI Autism Group
I have received the Prozac. I will try to call the GP today. I want to come off the medication ASAP. The photos have come back from the dancing session on Sunday. The weight gain is noticeable. 😥
The medication was not a good idea to begin with. I never wanted to be on medication. It has not helped me one bit. I want to quit as soon as possible. If I cannot obtain my GP appointment, I will stop taking them again. It is causing me no end of financial and emotional cost.
I must have a lifestyle choice/plan to keep myself stable. Like regular exercise (e.g., GoodGym, or my own gym sessions), not too many late nights, eating properly. GoodGym keeps me outward looking plus getting exercise and meeting up with people.
It is unwise to stop taking medication. Am I receiving ongoing care worker support? When will I receive CBT? I should not put myself in vulnerable situations where I am going to feel emotionally stressed. Am I still actively seeking another job? What is my status at DT? Can I discuss my difficulties with my manager over lunch or sometime? We might have another review in March?
I can see the benefits of staying there. But I am also looking elsewhere to an environment in which I feel relaxed in. Whatever decisions, it would be good to discuss. I have been fairly "wound up" recently. But equally reluctant to change things.
Rory spent the first few years of his life in an ice cave, carving out his palace of wonder. He's a bit of a love doll, but he who melts the ice shall have his reward.
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I have been recommended to acknowledge and process all that I have been though, where it all started from how it has affected me.