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.
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.