Communities

In the middle of analysing data and while I should definitely be focusing more on writing my PhD, I started thinking about communities (which is relevant to my PhD, but not directly). I decided to put my thoughts about this here, as they make my head very tingly and they are distracting from what I should be doing. Also, I am trying to empower myself to write more to get used to writing my thoughts, rather that store them in my head and do nothing with them. Also also, I think I'd really like to chat to all of you about this.

So I started thinking of the role of communities and the pressure of individual success. And I started wondering, what is the reason that we, as a society, strive for and celebrate individual success? And for some reason, my mind went to Nobel prize winners (or any award ceremony for that matter). I need to preface that by saying that my knowledge on Nobel prize winners is very generic and I am in no mood to do a Google deep-dive to find out more about them (thus further distracting myself and thus completely defeating the point of writing this, which is to get it all out of my system and get my brain back on track with what I should be doing). What I was thinking, therefore, is why do we feel like we need to celebrate INDIVIDUAL success so much (Nobel prize being just an example)? Why do we, for example, need to celebrate the fact that 'so and so' did this, or discovered this or anything like that and not celebrate the fact that we, as a community, a global community of citizens, are now able to have access to -insert invention/discovery here- which will, hopefully, make our lives better? Because surely no invention was a single person's contribution. Many people helped and contributed in very many ways, even if just one person made the breakthrough that put it all together. And, by extension, isn't that logic what perpetuates social inequalities (to an extend)?

I was just thinking, we live in a world where validation is a commodity and not everybody gets to have it. And that makes us competitive, rather than working together. And of course any competition will always favour some sort of people more that others. And often the way we go about social inequalities, is to make certain groups of people 'more competitive' by stressing out why they are valid and why they are important and so on, instead of challenging the very notion of competition where in the end only one person gets the prize and everyone else is just... And for me, ultimately, that goes back to celebrating individuality. Because if we were working together as a community, why would it matter if one person is there to make coffees and another person is there to operate complex programs who can do a multitude of things (whilst drinking the coffee that the first person made)? Why is making coffee less important than -insert a complicated and highly valued skill example here-? How does that ultimately serve us as a society? Is that driving us forward?

Many people might argue that it is. You know, it's been 'working' so far, right? We managed to do so many things as humans because of this mentality. Or have we? Or are these just the sort of stories that we choose to discuss more so than community efforts (or even the same events sometimes we may frame as individual successes or failures, rather than community ones). And how far can that take us in the future, in a world where we are becoming increasingly aware of our impact on each other and the effect that our beliefs and ways of approaching the world may have on other people?

Because, ultimately, I think this cuts both ways. It's not only successes that we approach this way, but also failures and tragedies. You know, like Hitler more often that not being portrayed and talked about as the villain who single handedly caused WWII and the genocide of millions of Jewish people, homosexuals and disabled people, when in fact the western world as a whole let those people down and Hitler's regime was just the one who pulled the trigger. The ways in which we approach ideas like racial inequalties and slavery, violence against women and so on are also often similar to this. Yes of course there were/are some people who are perpetrators and who have in and of themselves caused incredible harm to many others, specifically because they might be people of colour, women or any other marginalised minority. But these people were/are part of a society too, and this society is perhaps as much (some might argue more) to blame for these events as the individuals who actually committed these atrocities.

And ultimately working on both the praise and the blame on a community level I think is a good thing. Singling out people and individualising either success or failure is, in my opinion, one of the major themes that divide us and create the polarisation in our society that we've seen recently. So many people feel invalidated and useless, like they don't contribute anything or gain anything from being part of a society where -insert thing they are angry about- happens. On any side of the political spectrum. And so many others are trying to single out the cause of -insert problem here- to individual humans or small groups of people. Trump supporters. Tories. Immigrants. Liberals/socialists (not the same, but not sure how many people meaningfully distinguish between the two). You name it. And they end up singling those people out and projecting everything they don't like about the world or everything that's going wrong with their lives on others. But they are not the only ones who created it. We all played a role, whether we like it or not. So we all have to have conversations with each other, as calmly as humanly possible (and it won't always be possible or even appropriate to discuss calmly) about these issues, as well as where we want to go as a society. And no, we probably won't agree on many of these things. But what I hope, is that maybe where we might be able to agree and ultimately what may be more healthy and more productive, if not more realistic, might be to admit that we all share the blame, and the praise, for where the world is today all the same, and maybe stop trying to quantify the unquantifiable. And, maybe, things will change as a result.

My talk for the House of Lords Summit

I have recently been invited to give a 7 minute talk on a panel for reproductive and sexual health rights for disabled people, particularly disabled women and girls, at the House of Lords on a summit called: "Developing  New Future Leaders: Everybody Matters in Development". At first, I was panicked about it, as I didn't know what to cover out of all the various issues about autistic sexual health and reproductive rights. But, as always, with a bit of cross-posting on Twitter and various groups on Facebook, the autistic community came to the rescue. I tried to condense all their points in roughly 1000 words (which is around 7 minutes). I am sharing it below, for anybody interested.↓↓↓

Being an autistic individual in the world, one of the first things you learn about yourself is that you are wrong. Everything you do is wrong. You should be making eye contact. Even though it hurts. Even though you can’t look AND listen to someone at the same time. You have difficulty processing. From the very beginning of your life, everyone around you is looking for ways to fix you. Make you look less autistic. Make you look less like YOU. To this day, many popular interventions that target autistic children are compliance-based and focus on making them less autistic. A prime example of that is Applied Behaviour Analysis, which widely used to this day and has roots to the same principles as gay conversion therapy.

So what does that teach children? It teaches them that what they think is not right, appropriate or valid, it teaches them to ignore their own instincts, to comply to other people’s requests making them prime targets for ALL kinds of predators. On top of that, autistic people struggle to read body language, or understand non-autistic people, just as non-autistic people struggle understand autistic people. As a result, we often put ourselves in dangerous situations, because we didn’t see them coming. We are prone targets for sexual violence. About two years ago, someone in a Facebook group for autistic women I am part of asked: “How did you lose your virginity?” The post received about 100 responses. About 60% of the responses on that post said “Involuntarily”. That’s right. 60 out of 100 autistic women who responded in that post claimed that they lost their virginity by rape. And there are no official numbers on this, as there is little to no research on these topics at the moment.

Part of the problem is sexual education at schools. Education that is heteronormative and does not target the needs of disabled and autistic individuals. Many of us, perhaps particularly those of us who were identified as female at birth, don’t even know that we are autistic until much later in life, something which is rarely recognised still. Sexual education needs to address topics that are still often considered taboo and hard to talk about EXPLICITLY if it is it to help people (of all ages) who find it hard to understand inuendos and implicit meanings. Contrary to popular misconceptions, autistic people CAN and many of us ARE sexually active. Teach people how to give and receive meaningful consent. How can someone who has processing difficulties and delayed reactions keep themselves safe in a sexual relationship. How to manage their sensory sensitivities in a sexual relationship in a helpful way. Don’t just teach how people get pregnant or how babies grow but tell autistic people what to expect when getting pregnant, tell them about all the ways the body and the mind changes during pregnancy and breastfeeding explicitly, as well as how to best be prepared for it.

It also needs to cover the needs of all sexualities and genders, not just of those who are heterosexual. As a personal estimation, in lack of any research in the area,  I believe that at least a third of all autistic people are part of sexual and/or gender minority (lesbian, gay, bisexual, transgender, non-binary). Educators need to know that. Services, such as gender clinics, need to be aware of that, as they are currently very inaccessible to this very large demographic. Parents and carers need to know that, as having your gender and sexual identity being unrecognised can lead to serious mental health problems, isolation and suicidal ideation or attempts. Accessible services, informative sexual education and supportive environments can go a long way into changing that. 

Finally, it is important to protect the reproductive rights of autistic and disabled people. Many disabled people often tell me that they are coerced into not reproducing, so that they won’t carry their “disease” to the next generation, as disability is still seen as subhuman. I hope that one day I will be the proud parent of autistic children, just I hope that I will be the proud parent of non-autistic children. Autistic and disabled people are also often seen as unable to be good parents or be parents at all. They are often at high risk of having their children removed from them, because of lack of autism understanding from social services. After all, in many non-autistic people’s minds, lack of eye contact is often one of the first signs of guilt and lying. Finally, autistic people also need to be supported on how to pursue a safely delivered abortion and be meaningfully educated and prepared on the consequences that, if this is something they choose to do.

Masking is also something that many autistic people learn and feel forced to do. If I am told all my life that I am always wrong and everything I do is wrong, is it any wonder that I, as a strategic and logical thinker who loves to solve problems, am going to look for examples of people I should be like and start to mimic them? The result of that is putting mask after mask on my behaviour until even I don’t recognise myself anymore. And everybody around me knows the mask, not me. And what’s worse, people force me to keep that mask on. Our partners, “friends” and carers convince us to think that our masks are who we are, that “flappy hands” (stimming to reduce stress or show excitement) make us look weird, that we need to try to fit in more. We often can’t even be ourselves around our loved ones in the privacy of our own home. As a result, emotional abuse experienced by autistic individuals is alarmingly common.

As a result, so many of us are left with lingering trauma. So many services and professionals don’t know how to approach and support us. Common autistic experiences, such as monotropic focus on particular areas and sensory sensitivities, are often ignored or misunderstood. Academic research about autism that is done on us not WITH us. We are often excluded from the research and policy making spaces and we are not heard even about topics on our lives and lived experiences.

I am an autistic PhD student doing research on autism and gender, because I believe that these issues need to be addressed. I am doing my PhD on a scholarship that is half the minimum wage (chronically underfunded area), which is my only income at the moment. It is hard, but I believe in the importance of what I do, so I do my best with what I am given. As do many of us, hours and hours of unpaid work and activism to support a community that in the eyes of many, doesn’t even exist. So I am here to tell you that we exist. We matter. And I hope that you take notice. Thank you.

War for the Planet of the Apes: thoughts on the ability to communicate verbally and humanity

I have just been to watch "War for the Planet of the Apes" with a friend. Even though I haven't seen any of the other movies of the franchise so I am not even sure how much it connects with them, but I still thoroughly enjoyed it. I think it's one of the best movies of the year so far. But, perhaps more importantly, I felt it included so many interesting debates on disability, illness, disability, community, understanding and the essence of humanity, which I will proceed to discuss below. There will be spoilers, so be warned. Also since I am not familiar with the rest of the franchise, I don't know how and if these themes are explored in the rest of the movies, so I can't say anything about that.

For those who don't know what this movie is about, War for the Planet of the Apes revolves around a humanised species of intelligent apes who have evolved as part of a human experiment, have most of the characteristics of humans in their thinking, social structure, emotions and morality and have formed a tribe that tries to survive in a war against humans. The humans, on the other hand, have been affected by a virus that takes away their ability to speak and are fighting hard to avoid exposure to it. 

There are many things in this movie that have created a snowball effect of thoughts in my mind. Here's a few that I will be talking about in this post:

• The character of "Nova"
• The character of the Colonel and his reaction to the virus
• The society of the Apes vs how humans are presented

The character of Nova

Nova is a young girl who the main group of Apes find abandoned in a house. Nova seems to not have the ability to speak, but is able to communicate through hand gestures and sign language. One Ape, Maurice, feels drawn to her, because he has lost his own children and sees her as a young orphan child and proceeds to adopt her, much to the (initial) resistance of the rest of the Ape group and Caesar, the group leader and main character of the show. Nova joins the group for the rest of the movie and plays a very important role in their later plans to rescue the captured Ape tribe from the tyrannical humans.

Nova seems to blend effortlessly with the ape group. She doesn't struggle to communicate with them and quickly adapts to their communication style of sign language and gestures. She forms a strong bond with Maurice and goes through an existential crisis of who she is. In a very touching scene in the movieasking him "Am I an Ape?" and he replies "No" "Am I a human", he continues. He then points to a necklace (which said "Nova") of sorts that she was given earlier in the film and, in a rare instance of Maurice speaking English he says to her "You. Nova" as a way to explain that she is a bit of both. Nova accepts Maurice's statement eagerly and seems to have resolved her dilemma. Nova stays with the apes until the end of the film and becomes part of their tribe.

Nova's character is very interesting to me for many reasons. First of all, she never seemed frustrated on bothered in any way that she did not talk. Even though we, as the audience, know that she cannot talk because she contracted the virus that the humans have been fighting against, she herself doesn't seem to know that and she is at peace with the way she is, at least in terms of communication. Furthermore, even though she cannot talk, she can still communicate with the other apes via gestures and the sign language they use which she learns very quickly and easily by mimicking them. Although we are not given much of anything regarding Nova's backstory, the way she behaves in the film seems to suggest that either she hasn't been talking for years, or she never was able to talk, or she doesn't remember a time where she was able to talk or at the very least even if she does, she doesn't mind the fact that she can't talk anymore. What is even more interesting is that her inability to talk makes it even easier for her to blend with the rest of the Apes, as they mostly don't talk either. At the same time, the fact that there are a couple of them who do, like Caesar and Bad Ape, and Nova not only does not attempt to talk to them but barely interacts with them during the entire film and instead stays attached to Maurice, who uses sign language and grunts almost exclusively, seems to reinforce the notion that she is not interested in regaining the ability to talk or thinks that she is lacking in any way for being unable to talk (which is very much the opposite of the Colonel, as you will see below).

What is also very interesting about Nova, is her position on her "illness" and her humanity. The world thinks that she is sick and should be eliminated (as you will see below) whereas she herself doesn't seem to care or be bothered by the fact that she can't talk in any way. She doesn't seem to suffer any other consequences from the virus that affected her, physical or mental. This is an interesting observation, because later on the Colonel goes to say that the virus "takes away the very thing that makes us human". But even if it were so, Nova doesn't seem to mind if she is human or not. If anything, it seems that she'd rather be an Ape (a species who communicates primarily through grunts and sign language). That could of course be that she, by a combination of choice partly and necessity, ends up living with the tribe of the Apes but she never showed any interest in living with the humans, or even getting to know them better. She quickly shares the perception of the Apes that the humans are the enemy, those who enslave and kill the Apes and her dilemma of whether she is an Ape or a human seems to come from the fact that she suspects that she is of human decent, but does not want to associate with the humans in any way, she would much rather stay with her adopted father, Maurice and the Ape tribe. It is very interesting to see in this character (and in the movie in general) how being part of the human species and obeying its conventions seems to be a bad thing, a scary thing and something to rebel against. But it is also very interesting that Maurice doesn't try to hide the fact that she is of human decent from her but instead re-contextualises it for her in the nature-nurture framework, giving her a name and a category that makes her both. Essentially at the end of the film Nova is someone who may be biologically "human" (though not according to the rest of the humans), but is environmentally and socially an Ape. As a "new species", a combination of both, Nova seems to be the only non-Ape person surviving at the end of the film.

Nova is in many ways like an autistic child. Unaware of the world's perception of her condition, she has accepted who she is and uses her unique (unique to us as humans who communicate through speech, not to her or the Apes) traits to bond with other individuals she perceives to be like her and is eager to become a part of their society. Nova feels at home with the other Apes, because they all seem to have the same communication needs. In that she appears to be lucky; she stumbled upon a community of loving and caring individuals who have the same communication style as her. But she also seems to have made her own luck, by accepting who she is and seeking to live in accordance to her nature (instead of fighting it, for example, or mourning the way she is or trying to fix herself). Many autistic people feel the similarly for their own autism. They do not want to fix it, they do not mourn for it, they instead look for a community where they can be who they are, they seek to create a society that fits their needs and abilities.

The character of the Colonel

Contrasting the character of Nova, we have the character of the Colonel, the only other main human in the show. Colonel is the leader of a group who is obsessed with erasing the existence of Caesar and his tribe from the face of the Earth. The group acts in ways reminiscent of the army of Nazi Germany with their choreographed walks almost identical to those of Nazi soldiers, their slogans and even the hymn (which was the national anthem of the United States, a touch I must say I thoroughly enjoyed). Consequently, the Colonel himself takes the role of Hitler, a tyrannic dictator who addresses his troops every morning from his balcony only to radicalise them even more each time and to remind them of their "holy" purpose, which the Colonel himself very firmly believes in as well. The Colonel enslaves the Apes and makes them work for him. This work does not seem to be anything productive or to serve any particular purpose other than simply to torture the enslaved Apes as much as possible (perhaps it did and I missed it I don't know, either way it doesn't matter too much). He gives them very little food and water and tortures each and every one who seems to disobey him in front of the others, as an example.

Later in the film the Colonel introduces the concept of the virus. We have priorly been introduced to Nova and as we did Maurice said "she seems unable to speak, like us" and it is only after the Colonel reveals the existence of the virus to the enslaved Caesar that we understand why Nova can't talk (which only reinforces the fact that Nova doesn't know or care about the existence of the virus). After a series of events, the Colonel's soldiers capture Caesar and lead him in front of the Colonel. After being challenged by Caesar in a dialogue that I won't pretend to remember (but it had to do with sacrifice and the importance of family), the Colonel reveals the nature of the virus and what it does to humans. In his words, "humans lose the ability to speak first, then the ability to think and then they eventually die". Consequently, he believes that this virus strips humans of "the very essence that makes them human". He then proceeds to tell Caesar that his own son contracted the virus, as did the people who cared for him, as did the physicians who tried to cure him. As a result, he shot his own son, who, in his words, looked at him scared and confused and then directed his soldiers to do the same thing to every other person who contracted the virus, thus having to kill many close friends and mates and learning the meaning of sacrifice that he himself first demonstrated. As the movie goes on, Caesar and the rest of the Apes escape his capture and when he returns to kill him, we find out that the Colonel himself had contracted the virus from a doll Nova dropped in Caesar's cage earlier in the film and is, as a result, unable to talk. Caesar tries to kill him and the Colonel encourages him to do it by loading the gun he is holding and pointing it to his head. Caesar can't bring himself to kill him, however, at which point the Colonel takes the gun and kills himself as Caesar walks away.

There are many things that are interesting about the Colonel (many of which I won't be talking about here, for example I won't be going much into his militant group and his resemblance to Hitler unless it relates to the virus), but I am only going to talk about his position on the virus. First of all, the way he talks about the virus is interesting. He describes it as something that takes away a humans ability to talk (aka communicate verbally) and then think and then die. He makes it out to be a debilitating condition that eventually destroys the human brain. Yet we have no evidence of this from Nova, the human who is effected by this virus. The only thing she seems to be lacking is the ability to talk. It can be argued that the virus might kill Nova in a long enough period of time, but the film gave no such indication and as it appears (from the ending) to be the last film of the franchise, it safe to assume that the virus won't evolve in this way. The only thing, therefore, that the virus seems to affect is a human's ability to communicate verbally. And yet this seemed such a big deal to the Colonel that went as far as to call it "what makes us human", go on a long rant to Caesar about how the humans created the Apes, which are now smarter than the humans, and the virus is Nature's way to punish them for that mistake. Indeed the virus is so terrifying to him that he kills his own son for having contracted it, as well as other, at times very valuable, members of his staff.

If we were to continue the Hitler analogy, which the film very carefully weaves into its plot, the Apes can be compared to the Jewish people and those who contracted the virus to the millions of disabled people Hitler also assassinated. The first need to be punished for being born who they are and are clearly presented as a group whose abilities and talents he perceived as a threat to humanity, the second ones had to die because they were so significantly altered that they did not seem humans to him anymore. Hitler murdered million of disabled people just for being disabled and, although I am not directly aware of any stories about the fate of autistic people in Nazi Germany (after all autism was barely recognised then) we do know that Hans Asperger, who was a practitioner in Austria, had to hide his research out of fear of the harm it would have brought upon his subjects.

But what is perhaps more interesting is that the only "impairment" those affected by the virus seemed to demonstrate is the ability to speak verbally. They were still able to communicate with alternative systems (as seen in Nova's case) but that seemed so unacceptable to the Colonel that not only did he try to cure it, but upon failing to do that he murdered his own son, multiple, potentially invaluable, members of his army (like physicians) as well as himself upon contracting the virus. In other words, he refused to change his little society to accommodate those who cannot communicate verbally and was terrified that eventually they all might end up losing the ability to communicate verbally and thus, according to him, lose their humanity. Because in this world (much like our own?) those who cannot communicate verbally are not human. And even though it was relatively simple to create a society in which both could coexist (as demonstrated by the Apes), the Colonel didn't even entertain such an option, presumably wanting to maintain the purity of his superior species by maintaining its ability to speak verbally.

The society of the Apes vs how humans are presented

To conclude the comparison and the impression the movie left on me, we have to talk about the society of the Apes. Within the Ape society it doesn't seem to matter what style of communication you use, as long as the others understand you. Some use sign language and gestures, some grunt and some are able to speak English. They are all equally understood and neither is considered more or less intelligent based on their means of communications. Many use two or even three of those options (even though the first two are the most common). Yes Caesar, the leader of the tribe, is the most fluent one (which makes sense from a pacing standpoint as he has the most lines and is the only one who converses with humans), but the fact he is not the leader of the tribe because he can speak and nowhere in the movie are those who do not speak English presented as less intelligent. They are just as capable, just require more subtitles (which as someone who always watched subtitled movies because of my nationality, I find it so funny that it bothers English speaking audiences). I enjoyed the emotions and complexities the Apes' grunts and gestures were communicating so much. If it were up to me, the movie wouldn't have subtitles at all. The most important parts were communicated in English anyway and in many cases the subtitles seemed redundant (like when Maurice singes "thirsty" then Nova singes "thirsty" and then Caesar proceeds to give her  a flask of water - we could have deduced that ourselves without the subtitles, they seemed to have existed to appease insecure audiences who might have felt that they didn't know what was going on). What I found interesting though is that when, at the end, Caesar lies dying and Maurice starts grunting at him, clearly upset (and tearful) my friend (who has little relationship to autism and does not know that I am autistic) because somewhat upset because she couldn't understand him and kept asking where the subtitles are. Which helped me realised just how dependent on verbal speech most (allistic) people are. It was clear by so many signs that Maurice was very upset and of course it was also easily deduced from an entire movie's worth of him being Caesar's best friend and close adviser. Why did she need him to SAY how upset he was? And yet we are the ones who are blamed for not reading body language... Anyway.

At the end humans got eliminated and Apes were the dominant species on Earth, a turn that the audience celebrates because humans were evil. Having drawn the parallels that I did throughout the film, I can only hope that it also is a bit prophetic. I hope that in the not so distant future, ones ability and means of communication will have as much bearing on their status in the world as the colour of their hair and eyes. In a phrase I never thought I'd say before today, may we all become one day a society of Apes.

Diagnosed autistic: 3 years on

I received my diagnosis on March, 2014. For those who don't know me, I am from Greece and I came to the UK to do my master's in autism at the University of Birmingham in September 2013. And even though that was the primary reason I came to this country, there was another one: I wanted an "official autism diagnosis". I had pretty much figured out that I am probably on the autistic spectrum before I came to the UK, but there were no diagnostic services for adults in Greece and so I couldn't talk to anybody about it, much less get a diagnosis. When I came here I was incredibly desperate to get one, because I wanted to be part of the autistic community "properly", to be "properly" autistic. My personal diagnostic adventure soon became a part of my academic life, as I involved the online community of autistic women who have so greatly supported me in my research. And whilst I still think that that was one of the most life-changing things I have ever done, it changed the course of my entire career, at the time it was terrifying. After all, I didn't have a diagnosis yet, so I didn't know if I was talking as an autism professional or as an autistic person, which was a major, and very personal, dilemma. 

I remember my supervisor saying that I had to disclose in my dissertation my relationship with my participants, which at the time, almost broke me. I couldn't quite understand why it was so important for me to be so terribly personal in my work, after all wasn't it just important that these women have been going through all these struggles and nobody knows about it? In other words what I was saying was that their experiences, in many ways identical to mine, couldn't be described as "also mine" because a non-autistic practitioner hasn't given me their "autism stamp of approval" yet. It sounds ridiculous to me now, but it made perfect sense to me then and I think that it is a predominant thought of many autistic people who are going through the diagnostic process or are newly diagnosed, perhaps even more so in the case of individuals who cannot find themselves in the predominant autism literature (like autistic women and non-binary individuals). My university was very supportive and proactive about it and arranged for me to get in touch with a clinical psychologist who was part of the team that diagnosed adults in the West Midlands and a few short months later I had my official diagnosis.

And like many members of my beloved online autistic community then, I celebrated. I made a big announcement on my Facebook wall on the beginning of April. I took a selfie wearing a gold scarf. I started this blog. And perhaps most importantly, I could finally write in my academic writings that I am an autistic woman researching the experiences of autistic women. And it was great. Or was it?

There can be no doubt that knowing about my autistic-hood has been of great significance to me and helped me see my life in a very different light. That knowing that I am autistic put so many confused and inexplicable moments of the past into perspective and explained so much. But the problem is that that didn't start from the moment I learned about the experiences of autistic women and how much that explained my own life, but from the moment that I was diagnosed with autism from a much experienced, very kind, non-autistic clinical psychologist.

I remember sitting across from her on our second (and second to last) meeting and dreading what she was going to write on her report about me. I wanted to be autistic, I didn't want to be seen as not being able to do all the things I could do, or in any way less. I remember wondering if a 2000 word document could ever even accurately portray me in a way that will be relevant through the years (and the many way in which I am going to change the way I relate to myself and my identities, as I tend to do) that it will display all my individualities, my quirks, my abilities but also my challenges in a way that doesn't diminish me to a caricature, a stereotype, a section of who I am (and is being autistic all that I am or a section of who I am? And who decides that and how?). But, perhaps more importantly, is she the extremely wise, tactful and experienced person be that will be able to comprise such a document in such a way and does she recognise that she has complete and absolute control over my entire being, essentially rewriting my past, shaping my present and radically changing my future? Does this much experienced, very kind, non-autistic clinical psychologist sitting across from me in the room realise the complete and utter power she has over every segment of my being? And if so, how does she sleep at night? I kept thinking that the mere fact that I could have that much power over another person could make me lose sleep and give me nightmares, regardless of whether I did a good job with my power or not. 

As I was sitting there, this poem kept popping up in my head:

Had I the heaven's embroidered cloths,
Enwrought with golden and silver light,
The blue and the dim and the dark cloths
Of night and light and the half-light;
I would spread the cloths under your feet:
But I, being poor, have only my dreams;
I have spread my dreams under your feet;
Tread softly because you tread on my dreams.

(W. B. Yeats, "The cloths of heaven")

"But I, being poor, have only my dreams." In front of her, I was completely poor. I was broke, penniless. I had no leverage, nothing that she might have needed that I could have offered, no power. And she was sitting there, reading page after page of my personal experiences that I had written over many days and nights, with many fears, tears and snot and sent to her in a desperate attempt to convey as much of my previous experiences as I could, to prove to her that I am not lying, I am not making things up, I don't just "think" that I am autistic, I have been autistic all my life and it has had terrible consequences time and again, because nobody got me, nobody understood me. And at that moment I didn't knowin which side of that binary she would fall on. "I have spread my dreams under your feet." In that moment, whatever her decision would be would undoubtedly change (as it did) my entire being. It changed how I saw myself. It changed how I saw others. It changed my understanding of how others saw me. It changed my views on the people I choose to surround myself with. It changed the very essence and quality of my relationships. It even changed the entire course of my professional life. 

"Tread lightly, because you tread on my dreams". You tread on my dreams. This phrase was verbatim in a loop in my head, over and over and over again. You tread on my dreams. You tread on my dreams. You tread on my dreams. My dreams. My dreams. Three years later I can safely say that I have never felt more powerless, more terrified in my entire life. I honestly don't know if I would have felt more panick, more cold sweats, more heart thudding, more shiver if someone were to hold a gun to my head and threaten to kill me. She had a complete and utter control over all of me. 

I cannot think of another instance in my life where other people have had that much control over me. Perhaps my mother when she was carrying me in her, giving birth to me and keeping me alive during those first years where I was too young to keep myself alive. But there was a significant difference this time: this time I knew that this much experienced, very kind, non-autistic clinical psychologist had this overwhelming power over me. I was aware of exactly how much that power was and what she could do with it, if she wanted. And I was aware that there was no possible way for me at the time to ever change that power dynamic. She was to take this power, use it to describe me in whatever way she felt necessary and I were to take that description of me home, read and reread it and rejoice or mourn its existence and content. There was no other way.

In the end, I was one of the "lucky ones". My report, or as it read to me at the time (I haven't read it since, I have it somewhere in my inbox because I refuse to even have a printed copy of it in the house anymore) was very positive, very just, very accurate, something that I could share with a person I would need to share it with someday and good things can come out of me sharing that. Heck, I remember that she even asked me in the end to read it and correct whatever I didn't like in terms of phraseology, style, format and even presentation, which I was very grateful of. 

But that, as you may have guessed by me repeatedly using the phrase "this much experienced, very kind, non-autistic clinical psychologist" throughout this document, isn't even the point. The point is that there is no way for me, an autistic individual, to feel like I have any amount of power during that situation which is so deeply personal and defining my very core, unless the kind powerful individuals deem me deserving of the "honour" to have part of that of power. And this model of approaching autism leaves autistic individuals feeling terrified, powerless, constantly in the mercy of others.

Three years later, the fact that I am autistic is widely accepted from anyone that knows me. Nobody disputes it anymore. But, from time to time, I keep remembering that that's how "it all started". It didn't; it all started from my birth, or even, arguably, my conception, but, in terms of my social world, that's when being an autistic person started being a way in which I could exist in the world. In my head, that's when I started having the right to openly be an autistic person (I remember thinking before that: "I need to get a diagnosis, because what if it isn't even that? What if I have some other disorder that I don't even know now that it exists? I need to know that I am autistic"). 

And now, three and something years later, I am left wondering:

Where does that leave me as an autistic professional who works with autistic people?

But, more importantly, where does that leave me as an autistic person? 

Autism with a side of wooden marbles

In order to better understand the dilemmas around autism, here’s an analogy that I want you to consider: Imagine having a basket full of objects. Most of those objects are marbles and most of those marbles are wooden. In that basket however there are some glass marbles too, as well as some glass cubes. Now imagine two people watching that basket and having the following conversation:

* There are two categories of objects in this basket: the marbles and the cubes.
* No, there are two categories in this basket: the glass items and the wooden items.

Who is right? Well, both and neither. Because you can make a third categorization: the glass cubes, the glass marbles and the wooden marbles. And that’s the discussion we’ve been having as an autism community the past few years when it comes to low and high functioning autism: we either categorize according to the shape, so we put all the marbles together, completely disregarding the fact that some people may look neurotypical but are, in fact, very much autistic and as such have an autistic person’s needs (when we don’t recognise the struggles of women on the autism spectrum for example because we have defined the “autistic behaviour” with male standards since we have studied mostly males on the spectrum) or according to the material, so we group all those who are on the autism spectrum together, completely disregarding that they may be of the same material but they will have different needs and be in need of different approaches (as we did in DSM-5, when we took the term “Asperger’s Syndrome” out of the diagnostic manual and now everybody is diagnosed with an “Autism Spectrum Disorder/Condition” which, to somebody without an extensive knowledge on the autism spectrum, sounds like everybody with and ASD/ASC has the same needs).

Now let me take this analogy further. If you see a handful of marbles, one of which is glass, you are going to notice that this marble is made from glass. That is not going to stop you however from treating it like a marble and playing with it the way you would have with the other marbles. But soon enough you realize that you can’t do the same things with this marble that you can with the wooden ones. You can’t, for example, hit it very hard because it more fragile than the wooden ones. You can’t throw it from the first floor and expect it not to break. You can’t dive it in boiling water and expect that you’ll be able to touch it afterwards. In fact there are many things that you can do with a wooden marble that you can’t do with a glass one. But there are also many things that a glass marble can do that a wooden one can’t. A glass marble can change colour according to the light. It can reflect other objects and change their shape and size or perhaps can come into more interesting colours. None is less than the other. They are the same, yet so very different.

Now how about a glass cube? A glass cube would be much more difficult to include in a classic game of marbles. It can’t roll, so it spoils the fun of rolling objects. It may chip easier, because of its corners, so you should be even more careful when you use it. Its corners can be really sharp, so they can potentially hurt you (if you press them hard against your skin for example). That, of course, does not mean that the glass cube is any inferior to the glass or the wooden marbles. It’s just different on another level. Nor does it mean that you can’t include it in a game of marbles at all. You just have to be more creative on how you are going to do that. Instead of making the point of the game being, for example, whose marble is going to go furthest, you can make the point of the game whose marble is going to touch the glass cube first, or go past the glass cube first. The possibilities are endless really, as long as you are set on two facts: a) not all objects have to be enjoyed the same way and b) all of the objects should be included in the game.

The mistake we do as a society is saying “There is absolutely no room for cubes in a society of marbles” and “If you are a marble it doesn’t matter what you are made of, I’ll always treat you as if you are wooden, because you are a marble”. In other words, if you are unlucky enough to have to make other people come out of their way to accommodate your needs you have no value, worth or place in the today’s society. If, on the other hand you fit in just enough to be able to play by rules that are made for wooden marbles, no matter what impact that has not you (since you are made of a much more delicate material), you should play by those rules and put yourself in the risk of breaking. And no wonder that soon enough you are going to crack, or get chipped or even break and then you are going to get thrown away because you won’t have any value anymore. The result is a whole lot of wasted marbles who would have been much more useful if we just changed the rules of the game.

And here comes the other problem those who work with people on the autism spectrum face: having to make the countless efforts and waste huge amounts of both time and money in an effort to roundify the cubes. In other words, those of us who are unlucky enough to be in an obviously different shape suffer through many hours of interventions and approaches and lectures and procedures specifically designed to make them behave like a marble, whereas those of us who are different only in material and not in shape have to go through a lifetime of being expected to have the same properties as a wooden marble and being constantly judged on the fact that we can’t do something that our material is by nature unable to do. And the answer is so simple it’s almost funny:
Yes, it’s a cube. It’s never going to roll. No, it’s not useless.
Yes, it’s a glass marble. No, you can’t throw it from the first floor it’ll break. Try to find other ways to play with it.

In other words, the solution lies only on a change of perception. And what society must finally realise is that perceptions can change: people can’t.

Let me offer a further example of what I mean: Imagine a little boy being given this basket of objects as a gift. Imagine that the boy wanted to play only with the marbles, so he constantly leaves the cubes in the basket and doesn’t include them in the game. His father goes to him and watches him play and notices that he doesn’t include the cubes and asks him why. The boy answers: “well, they don’t roll”. So the father takes the cubes away, gives them to a glass expert and turns them into marbles. Then he gives them back to the boy and now the boy has a basket full of only marbles.

What are the problems in this scenario?

* The boy hasn’t learned how to fix his problems. His father magically made the problem disappear and took it upon himself to find a solution in a process where the boy had no part in.

* The father spent a lot of time, energy and money to fix the problem his son was facing.

* The boy was deprived of potential creative ways of learning how to play with different objects and missed on creative opportunities to use the cubes either by themselves or alongside the marbles.

* In any similar situations in the future it is more likely for the boy to either expect the challenge to magically disappear or wait for somebody to take the challenge away from him. He hasn’t learned how to deal with his own problems and therefore he hasn’t learned to depend on himself, to be creative and to find solutions for his problems. And if his father’s behaviour is a pattern and not an isolated incident, it could be very possible that the boy is missing out on opportunities to learn valuable and important life skills that could have been very useful to him in future similar situations.

* Even if the boy finds out how his father solved his problem what he has learned is an impractical, complicated and expensive way to solve a simple problem. He has learned a way that is difficult to replicate in the future because it requires tools and abilities he doesn’t have and the help of somebody else he may not always have access to himself.

* Finally, the boy learned that his feelings, judgements and temporary whims are worth money, time and sacrifices and that people should try to accommodate his desires by altering his environment accordingly. In return all he has to do is show his dissatisfaction with a certain situation and the situation will magically change. And again, if his father’s behaviour is a pattern rather than an isolated incident, the boy might slowly but steadily learn to expect other people to honour his every wish and desire by altering the situation, which is not always possible. That is a dangerous lesson to be learned because not only it makes somebody selfish and self-centred, but also it makes him completely unable to solve his own problems and find easy, practical, fast and creative solutions to life’s problems. Finally, by learning to solve his problems in such a radical, and not always possible, way, the boy has learned the way to disappointment, rather than adjustment.

Now imagine the same story, but with a different outcome. The little boy is still given this basket of objects as a gift. He still plays only with the marbles, constantly leaving the cubes in the basket. His father still notices so he goes to him and asks him why he doesn’t include the cubes. The boy still answers: “well, they don’t roll”. So the father sits down with the boy and tries to show him ways to include the cubes in the game. He takes the cubes and makes a wall the marbles have to bring down in their course. Then he makes a tunnel with the cubes the marbles have to go through. The little boy may react negatively. He may not be open to the idea of adjusting his game, at first, he may like the way the game was already played. But if the father persists a little bit and shows enthusiasm and excitement about his wonderful ways of including the cubes in the game, then the little boy is sure to go along and try to explore the new fascinating ways his father is playing his game. Then he starts to play alongside his father this exciting new game. Then something even more amazing happens: the little boy has started inventing new ways of using the cubes in the game. He puts the cubes into two lines and makes a road for the marbles to go through. The father slowly steps away and lets his son play with the marbles and the cubes by himself, whilst the boy constantly invents new and creative ways to use the cubes into his game of marbles.

What has the boy learned?

* How to solve his own problems.

* How to creatively use objects in different ways.

* To entertain other peoples’ perspectives and learn from their ideas and points of view.

* He has expanded his horizon and will now be more willing to include even more different objects in his game (such as pyramid shaped bricks).

* That it doesn’t matter what you have, you can still use it in a way that serves your purpose. You just have to find out how.

The boy in this analogy is our society, who has learned to accommodate people of one certain shape and material. And the father is the people that work with those on the autism spectrum. Some of those people may choose the first approach. Remove the autistic people and only give them their rightful place in society when and if they manage to be in a shape acceptable enough by a world made by others and for others. They will use ways that are difficult, complicated and expensive. And in the end what they will realise is this: you may be able to change a cube, but it’s far more difficult to change a person.

And others, hopefully, are going to choose the alternative approach: they will try to find creative ways of including people on the autism spectrum in today’s society, to find them a purpose and a point that will serve their own individual abilities, talents whilst taking into account their own individual needs, by changing society’s perception on how to use/include people on the autism spectrum. And of course the stubbornness and initial resistance of society to go out of its way to do that is expected but hopefully by seeing the benefits of including people on the autism spectrum and by realising that people on the spectrum are going to be very good at the things they like doing or if they have specific instructions etc., they will be more and more willing to include people on the spectrum because it’s not only for their benefit, but those who include them benefit as well.
And at the end what is learned is this: if the rules get changed, everybody wins. If you manage to learn how to treat a glass object so that it doesn’t get damaged or break, then you automatically have the ability to treat wood well too, so that even wooden marbles won’t get the surface scratches that they do through hard play. If you manage to accommodate the needs of something so radically different such as a square glass cube in a world of wooden marbles, then there’s absolutely no way that you won’t be able to find a way to accommodate the needs of a wooden marble that’s different, but only slightly.

(PS.: I felt necessary to point out that there are many situations in which people on the spectrum are more than capable to advocate for themselves and they don’t need somebody else to advocate for them. That may be where my analogy falls a little short, but I hope my point still comes through.)

Can you really choose the people you surround yourself with?

A common phrase we often hear from NT's is "You cannot choose your biological family, but you can choose the people you surround yourself with..." Which goes to say that you have the ultimate control over who is in your life and who is not. Umm... really? Cause as an autistic adult I have never found any statement to be more wrong, confusing and stressful than this one. And here's why.

Ever since I was little, I didn't really care who is in my life. It didn't really matter and everybody looked the same to me, I could not tell who was different and in which way. I remember distinctly in high school having a black classmate (which is a very rate thing in Greece) and it never dawned me as something noteworthy or even noticeable until somebody else mentioned it. Same thing happened when I met people with physical disabilities, different stylistic choices etc. It's not that I didn't notice or that I didn't care, it's just that it didn't dawn on me that this is something I should care and I should keep in my head under a label called "different", because apparently it's important that this person is in a way different. I always say that back then it was physically impossible for me to be racist, because it just didn't matter to me what everybody else did and looked like.

Having said that, there were also a variety of other things I couldn't (and sometimes still can't for a long time) tell about people. Who was nice. Who was mean. Why is this person considered nice and the other one mean. Who could be my friend and who could hurt me. What to do to make the right choices concerning the people who will surround me and how to get rid of someone that is not good for me. And this, in today's society, is a very dangerous thing to be.

Whenever I am in a social situation, I never know what to do. And it seems like when you don't know what to do, you rarely have a choice on who you are going to surround yourself with. Looking back at my life, all the friendships and relationships that I had was either because a) somebody took me under their wing and "let" me be their friend or b) told me how to be in a relationship/friendship, was my relationship coach if you will. Not only that, but I did not seem to have the ability to get rid of the poeple I didn't want/weren't good for me from my life. No matter how bad a person was, if they were familiar, they automatically became good. I don't know if that makes sense to anybody else but, for me, there were times in my life where hostile familiarity was more appealing that a potential future nice friend that I didn' know/had to get used to.

And somehow like this, I always end up crossing my fingers and wishing that some "cool kid" will talk to me and bother talking to me enough to realise that we could actually be friends. And then the next step is crossing my fingers that that said "cool kid" doesn't turn to be an a****le. And then I end up still crossing my fingers wishing that said cool kid won't get bored of me and want to move on, because then I will have lost my only chance to have a friend.

I know that sounds pathetic and that it makes me sound really passive, when I am really not. I am a really strong person that will fight for what she wants, when it comes to ANYTHING ELSE but personal relationships. And it's not like I don't WANT to be more active in my personal relationships is that I don't know HOW to be, when everything I do to approach people is going to be either awkward, weird, too forward, not forward enough or even inappropriate at times. And I might do the exact same thing an NT will and still do it wrong for some reason... It must have something to do with that darn body language that I can't seem to be able to crack. I think something about me just screams "weird". And I end up either alone, or in the mercy of the people who will bother themselves enough to deal with me.

If you are an NT you cannot possibly know how it's like to live like this every day and to constantly feel threatened and worried about everybody and everything. To be too trusting and open or to be so hurt that you are paranoid and suspicious of everybody and everything. And above all else, you don't really know how it's like to feel that you don't have any control over who gets in and out of your life. But if you are an aspie, then hopefully you know what I am talking about and I can relate. If you do. just know that you are not alone. And let's all hope that the world will soon be a safer and more accepting place for us all...

The right to be and look different

New Year's resolutions is one of the few "trends" I tend to like. I always made lists of resolutions for the new years for things I wanted to do. I always started very passionately doing them in all through January but then life happened, anxiety happened and I always, slowly but surely started prioritising coping over living, because that's where my life seemed to be leading me.

All these were thoughts I had all through the holidays, alongside deciding what my resolutions are going to be this year. I started looking back at my life and trying to find what was missing, what did I need to decide to do in order to keep my anxiety levels low enough so that life is actually "livable". And then it hit me: the answer was shockingly simple, as much as it was obvious.

I NEEDED TO BE MORE AUTISTIC.

I realised that over the years I slowly prioritised how other people viewed me, or what they expected of me. And because some of these people were always in my life and in my few everyday interactions, I slowly starting endorsing their views of me and started viewing myself as they viewed me. And that was, sadly, normalising. I started endorsing the view that in order to be successful at my job I have to look and behave a certain way. And that way of behaving was skyrocketing my anxiety levels over the roof before even leaving the house! This could not go on for much longer, if I wanted to maintain my sanity.

And what is even worse, I realised that other people started viewing me as a "normal" person. They started to have expectations of me to behave like everybody else. That I could cope with things that they knew I couldn't in the past, to "grow out" of certain behaviours, to be socially graceful and smiling and polite. And with the holidays being a period of way too many social gatherings, that started slowly sucking me in. I started not only wearing a mask, but becoming the mask I was wearing.

The most ridiculous part of it all is that everything started off of my getting my degree and my future career prospects. My "career" (god I HATE that word!) is based on my being different, which is what inspired it, what's maintaining it and what is going be its fuel for the rest of my life. I want to work with people that are different because I get people that are different and I feel I am my best when interacting with them. That is why I work with people on the autism spectrum and I am certain that, in one way or another, I am going to continue doing something autism related for the rest of my life. Which is why I find the notion of being someone else in order to be successful at something I am good at because I am who I am, utterly ridiculous.

So I started wondering how I could do that, how I could be more autistic. Immediately heaps of "red flags" started popping in my head from things I do or have to do that need a more "autism friendly" makeover. I started making lists, arrangements, decisions, plans. I organised everything and I was very satisfied with the result. And then it hit me... What if my resolution doesn't make it past January this year either? What if "life happens" again and I mess everything up one more time? How can I prevent that from happening, when the reason that it doesn't happen is because people expect me to do things I am simply not capable of? When people expect me to be someone else?

And then the answer was simple: well, I needed to look different too. I obviously can't show my autism, but if I can change something in my appearance so that everybody else thinks "she's not quite like everybody else", maybe then everybody will stop treating me like this "perfect little girl" I am not and start treating me like the messed up awesomeness that I am. Maybe I can get people to be biased into perceiving me as different by the way I look. And if that is indeed so, doesn't it worth the effort?

So I dyed my hair pink and pierced my nose. I know it's not much and it doesn't really scream "autism" (which isn't what I was going for anyway), but hopefully it does send a message to people along the intended lines. And, as I expected, it did to some and I did get told that people are going to take me "less seriously" now. That I am not going to be successfully academically or in my career, just because I mildly altered my style. I laughed at the stereotypes coming up and I realised that what I wanted to do does indeed work. People do indeed treat me differently with my new look (thankfully nobody I work with has shown any negative reactions yet, but I am lucky to work in an environment very respectful of individual differences). My autistic brain finds it completely baffling and ridiculous, but it is a sociological observation nevertheless. 

I don't mind. After all, if people don't think someone with pink hair can produce good quality academic research and do a job she has qualifications on effectively, then there's no hope for anybody slightly different to ever survive in this world. These kinds of stereotypes need to be pushed and questioned. And they need to be questioned for the sake of everyone who is slightly different in whatever way, by choice or not. People need to start looking and behaving more like the way they WANT to and less like clones or copies of something. And those who can assist that societal change in any way, especially if it means they are going to start being more like themselves, I think they have the moral obligation to do so.

Nobody should feel afraid or threatened to accept their individual differences. Nobody should feel that they have to be someone other than who they are in order to do something they want to or they are good at, even more so if that has to do with paid employment (which will grant them financial independence, a crucial step towards somebody's well-being) or personal aspirations and dreams. Not at this day and age... So no, I will not compromise. I will look slightly different so that I can constantly remind people that I AM different, and not slightly. AND THAT'S FINE. In fact in my world, that's freaking celebrated. Peace out.