Intellectual bulimia: It's a thing!

When I was a kid, I was obsessed with reading. I would read anything. From literature to encyclopaedias, dictionaries, magazines, anything I could get my hands on I would read. Anything with letters. I was obsessed with reading signs and posters I saw on the streets, the names on the shops, everything and anything. Even now whenever I get out I have to, HAVE TO, read everything I see. If I see a poster or a shop name or anything, I will stop and read it. I try to stop myself from doing it if I am in a hurry, but it's often compulsive. I have to do it. I remember how upset I was feeling shortly I had learned to read and I realised that I couldn't read all the shops' names because they were in English and I hadn't learned the English alphabet yet, only the greek one. I remember how motivated I was because of it to learn English and be good at them. I was only six at the time...

Ever since, I devoured everything I could get my hands on. This continued all throughout primary school and stopped when I hit adolescence. By that time I had read everything we had in the house (most books at least twice), which is a major achievement, as I was the child of two bookworms and EVERY room in my house had to have a bookcase. We even have a basement filled with books. As long as this stopped, I stopped reading. Books I mean. But I never stopped learning. I was really into the school knowledge, I loved learning the school subjects, maths, physics, geography, chemistry (oh, chemistry was one of my favourites!), ancient Greek, history, everything. I also did after-school lessons in some school subjects, in English and French (many greek kids do). My parents had sent me to music lessons since I was six (that's another blog post I plan to do) and they also sent me to computer lessons as a teen on top of everything else. We learned basic computer programming there which I looooved and I was told that I was really good at.

Knowledge became a pain in the a** when it became compulsory. National exams. Preparation for the national exams. This was not something I enjoyed. I wanted to learn because I WANTED to, not because I HAD to. Tell me that I HAVE to do something and I'll do the exact opposite, even now. It was also the time when my anxiety and depression kicked in and occupied a major part of my brain, so there wasn't as much space for knowledge as before... Then I went into university and for my four years as an undergrad the same pattern continued. I craved knowledge, from many different sources, but only on the things that I liked and found interesting. I found autism interesting. Autism became an obsession, I wanted to know everything I could about it. So did neuroscience. I was always the annoying kid on the front row that would ask a ton of questions to the lecturer and make everyone else wonder when I'll shut up or be satisfied with the answer. I rarely was. I stopped asking when I was told to and I often went to the lecturer after the lecture ended with my next question. I followed the lecturer to their office, asking more questions. It had never occured to me that I was being a bother or I was annoying to them and frankly, even if I was told that I am I wouldn't really care. I just wanted to know. If they pointed me to a book, I had to get it and read it straight away. And I would have made so much more of my time there if I wasn't that obsessed with trying to socialise and fit in...

Even socialising though I approached from a scientific point of view. I tried to learn people through books, since it was impossible for me to learn them through social interaction. I had to study them. I soon moved away from reading about them and started to observe them, which I realised was an excellent form of obtaining information and making sense of the world. I am so lucky that my job is so largely based on observing people (you have to first and foremost observe a child on the spectrum to learn what is troubling them and why) and learning to do that with people in my life in general was a really important skill that I then transfered to my job.

After I finished university, I realised that I had completed all the necessary steps of knowledge and I panicked. As far as I knew, there wasn't a protocol for obtaining structured knowledge anymore. I was left alone in the world and the time had come where socialising and being aroung people should take more of my time and sitting alone and studying should take less and less (or at least that's how it seemed to me at the time). I freaked out. What sort of deal was that? How was I gonna live like this? I didn't want to. I was desperate to find ways to continue learning. Continue providing my brain with information. Diving into my work and overwhelming myself with work obligations was one of the ways I found to do that. In a country where unemployment for people of my age was as high as 80%, I managed to work close to 12 hours a day. It was exhausting (particularly the socialising bits of it), but oh so satisfying... I learned to learn people. To guide people. To help people become a better version of themselves. I learned so many things...

I was missing/craving structured learning however. I continued my French which gave me a taste of it, but it just wasn't enough for me. I decided to move abroad and do a master's degree. Which I managed to do, thankfully, so I spent all last year doing that and stuffing my head with more knowledge on top of my knowledge. During my master's, my intellectual bulimia became "worse". I had to read all, or most, articles related to my assignment topic in order to do my assigments. I had to read as many library books as I could. People had to tell me to actually stop reading, because I could be doing it forever. That's when my mum introduced me to this term. "You have intellectual bulimia", she told me during one of our Skype calls. "You cannot stop learning. You have to know everything about the things that you are interested in. It's a good trait, as long as you keep it under control and it doesn't overwhelm you".

I love this term. I wish it was a real condition, so that I could diagnose myself with it. I do have intellectual bulimia and an overwhelming need to know everything about the things that I am interested in. I don't think that I will ever want to stop learning. Once my masters finished (which has been less than a month during which my hands were something more than full), I started becoming agitated again. What will I do now? What will I learn this year? I have moved into employment and I will do my best in that area, but, in a way, it doesn't look as challenging for me anymore. I love it, but I know how to do it. I have strategies in my head to put in place the moment I start working with a new person with autism/special needs. I love doing it and my brain feels really satisfied while doing it, but what about the rest of the time?

I decided to start learning Japanese. I always wanted to but never had the time. I want to finally do it once I sort out my finances. I want to continue my French. Once I succeed in getting my proficiency degree in French, I want to start learning Spanish (alongside Japanese). Once I am done with Japanese Korean will come. Then Mandarin. Once I am done with Spanish, I want to learn Italian. Then either German, Russian or Arabic. I will continue to a PhD next September, so that should also satisfy my knowledge cravings for a while... I also want to do a conversion course in psychology (which is one year) and then a master's program to become a clinical psychologist. After I am done with languages (which won't be for another ten years or so from the looks of it, haha) I want to get into music and instruments. And overall by the time I die I want to know as many things as possible. I now know that if I don't do that, my brain is going to go crazy.

Is this an autism thing? I think it is. I know many other aspies/auties who have the same need, the need to always learn something. I think that for us is so much easier to make sense of the world from a learner's position, through the structure of an education program or a book. It's safe, interesting and serial, which is how we learn. It's so much better from the chaos of the social world, which is incomprehensible to us, too stimulating and too hard to process with stimuli coming from every which direction. We are amazing learners most of us, given that our interests are cultivated and the learning environment is one that suits our individual learning style. And eventually all this knowledge helps us put the puzzle pieces together and start seeing the big picture. This is the autistic way to knowledge, I think. It doesn't have to be bulimic, like it is in my case, but this is how I think it should be structured, more or less.

I would love to know what other aspies and auties think about it, but many peoples' stories came to mind while I was writing this...

Autism and scary clowns and sh*t... (begins with a rant, ends with a point)

My views on depression and other mental health issues were (and to a degree are) very largely affected by the views of the environment I grew up in and I believe that, to an extent, that’s why it never even occurred to me to ask for help for neither the depression or the anxiety I had in the past. I mean where I come from, when you have any sort of mental health problem, no matter why or how you got it you just “suck it up and grow a pair” because it’s your fault, obviously, for being a weak cry-baby that can’t do what other people can. Or at least that’s the impression that was created to me at the time. I now know that this is not the case and do believe that having a mental breakdown doesn’t mean that you are weak, it means that you have been too strong for too long. The attitude “once a mental health patient, always a mental health patient” of the medical system does piss me off and I find doctors so confusing and frustrating, that I believe I would be on the verge of taking out all my clothes and running up and down the street screaming “I am Napoleon!” before I sought any sort of help through the medical system for any such issues in the future. Doctors do not understand AS and I don’t see them understanding it any time soon. I do not like to have to explain who I am to people on my good days anyway but on my bad, you just see a blank expression on my face and tears pouring down my eyes “for no reason”.

When I was at my worst, I was writing novels in which the people fought and fought with their demons or for what they wanted and in the end the only catharsis they got was death, often by their own hand. When I showed those novels to my mum she told me that they were very well written, but she prefers characters that stay strong and are strong females that overpower their environment. That was one of the reasons that I believe I needed to grow a pair. I thought I wasn’t allowed to be weak, I had to, HAD TO be strong and prove myself to everybody. To this day I watch anime (e.g. like Naruto) where a character always does things because he/she needs to prove him/herself to others and my heart goes out so much to that imaginary person, more often than not tears come to my eyes and/or I scream on the screen “You don’t have to prove yourself to anybody damn it, just live your freaking life already!!!!” It’s like I am not screaming at the character, I am screaming it at me. Well, past me.

I am always amazed when people say things like “oh, but you are so successful now!” to me. I mean don’t get me wrong, I do give credit to myself for my accomplishments, but that is just such a superficial observation to my ears… My mum does that a lot. She is unbelievably proud of me and I am very happy for that, but she only focuses on the positives of my life, the things that I’ve overcome, the accomplishments I did. Understandably, that makes a pretty good parent given the number of other parents who, willingly or not, constantly put their children down and do not push them to achieve according to their potential. I like to call my mum “a crazy coach”, because even at my lowest she was always, ALWAYS there to shout “get up, stand up, you are strong, you can DO THIS!!!” and it to this day it’s the main reason I am where I am and I have done what I have done. She always believed in me, even when I didn’t believe in myself and I will always be grateful to her for that… The lesson that we both had to learn though (because she makes that mistake in her own life as well) is that not being ok from time to time is ok. It’s ok to not be able to do something, to have had enough, to feel overwhelmed, to feel like there’s no tomorrow. I am an aspie and when things get bad they were never good to begin with, whereas when things are good they were never bad anyway. My mind is that black and white and I have learned now that I need to let it do its thing for a while. I do give time to the “end of the world” moments to unravel, but I don’t give them space in my mind, if that makes any sense. I know now, that this darkness I face, when I face it, is just what it is. A passing darkness and the world is going to be better tomorrow. I don’t usually believe myself when I have these thoughts at my worst, but at least I have them. Darkness is not the bigger picture anymore. Or, to put it better, I am able to SEE the bigger picture, see beyond the darkness…

Let me give you an analogy of how life felt between the ages of 13-23 just so you understand why the “oh but you are so successful” observation sounds so silly to me. Imagine that you are running down the street and a crazy clown with a knife is chasing after you. Imagine that you fall and scratch your knee. Are you going to stop running and start crying about the knee or start taking care of it? Of course not! You are going to get up and continue running, because if you don’t the clown is going to get you and then you are dead. Quite literally so. Imagine that you sprain your ankle. Do you stop and wrap it up or do you scream “oh shit!!!” and continue running like a crazy person? Probably the latter.

That’s how life was for me during this decade. Running away from a scary clown with a knife. I had to, HAD TO finish school because otherwise, like in video games, it would mean that the clown got me and I got “k. o.” and I have to play the level again, which was so hard and so emotionally frustrating in the first place. I had to finish university for the same reason, it felt like a very difficult video game level that I absolutely had to pass not necessarily because I wanted to, but because if I didn’t the scary clown would chase me forever. And I didn’t even like the game I was playing. I just felt like I HAD to play it. This is what everyone expected me to do.

Now if you say “well, yeah, but did you still beat the clown and passed the level” well, yes I did. But then again, imagine that at the end of that road where the scary clown is chasing you is the police station, where you know that you are going to be safe. Aren’t you going to run like a maniac to get to that police station? Of course you are. Are you going to reach it? Hopefully. Is it going to be considered an achievement? Yes, in the sense that your survival instinct is just so strong and you are brave and courageous enough to get there with a crazy clown chasing you, a bleeding knee and a sprained ankle. But people are not going to tell you “you are so awesome, you did something few people do!” No, I did something everyone in my situation would try desperately to do and I was lucky enough to achieve it. And yes. I do not think that most of it was because of my ability, because my whole mind was focusing on SURVIVING, not SUCCEEDING. “Success”, if you will, was just a happy coincidence. And then it all comes down to “why is it success anyway? Why am I considered more successful than someone without a university or a master’s degree or whatever else I have done?”. The reason lies purely on the structure of the society, which sadly adores classing people in categories according to their achievements, for a reason that I never have and will never fully understand. And I doubt that many people have gotten the full grasp of it, they just do it and it my eyes it is completely stupid.

So then, to go back to our story, what happens when you finally reach the police station? You go in, you shout “heeeeeeeeelp, a crazy clown is chasing after meeeeeee!!!” and the policemen go out and take care of the clown. Did you solve the problem in the end? No, the policemen did. Are you considered as a person that has solved the problem? Yes, because in the common mind the one responsible to take care of the criminals is the police and not the civilians, and you are a civilian. If you HAD taken care of the clown by yourself, you would have perhaps done something that you weren’t supposed to do (like threaten the clown with a knife in return) and potentially get into even more trouble because of it. Because, one way or another, in today’s society we are not often considered either able to find or responsible for applying the solution to our own problems. You are supposed to tell someone. You are supposed to ask for help. Even if you can’t, even if nobody will offer. Because if you don’t, the problem doesn’t exist and by the time others realize it does all you get was “well, you were not SUPPOSED TO solve it like this”. Therefore, much like some video games, life often has ONE solution. ONE way to go through it. Some people realise it, some people don’t. Some people conform with it, some people don’t because they see the stupidity in it.

Generally, people revolve a great deal of their personality around the social amount and form of the social norms they confrom to, as well as the reasons behind their choice. Personally, I think I did a bit of both. Because my concern at the moment was not forming an identity. I didn’t even realise I was supposed to do that. My main concern was TO SURVIVE. To get away from the scary clown. I did get a number of identities during that process, mainly because I thought that adapting to some environments will help me beat the clown, but they were never substantial, no matter how passionate I may have seemed about them for a certain period of time. The only identity that was very important to me and had a lot of substance in it as it was my way of telling people “help me, a scary clown is chasing me!!!” was that of the metalhead. To this day I am ever so grateful to this music and the bands that I used to listen to at the time, simply because they managed to put words to things I couldn’t and it made me feel like there are other people on this planet that struggle with the same issues as I did. Metal was my therapy for many years. And it stopped being my therapy when I finally started to have less need of a therapy. (The “problem” is that, in my eyes at the time, the people who struggle with issues, don’t talk to professionals. They sit in their room all day long and listen to other people spelling out their problems to them through song. And from time to time, they meet with other song listeners and talk about those said songs when, in reality, they talk about their problems. If they need to talk about their problems more, they write lyrics themselves. But that’s another story altogether, haha!)

So why the hell didn’t people realise that a scary clown was chasing me all these years, why don’t they realise it for so many people around the world that are chased by scary clowns every day of their lives? The answer is simple, as it is sad: THEY DON’T SEE THE F***ING CLOWN. Yes. We are the crazy people that are chased by imaginary clowns that don’t exist, because the rest of the world doesn’t see them. Or even worse, they UNDERESTIMATE THEM. They perhaps see the clown but go like “it’s just a clown, it’s not gonna hurt ya, clowns are nice and funny, everybody knows that!” and if you scream to their faces “BUT IT’S HOLDING A KNIFE AND RUNNING TOWARDS ME, THAT IS THE VERY DEFINITION OF DANGEROUS!!!!” they are going to tell you that you are overreacting, taking everything personally, are actually quite selfish to think that the clown would even bother chasing you because you are not important anyway and that you are not the centre of the world. And leave you utterly baffled and frustrated, because in your eyes it is only rational that when a freaking scary clown is running after you with a knife you go ask for freaking help because it a very, very, very, very scary situation. See how easily NT observations can be utterly frustrating for someone on the autism spectrum? We look crazy to you and you look stupid to us. Don’t you think it’s high time we found other ways of seeing each other?

So what if you do see the clown and is not indeed as scary as I make him out to be? You see that what frustrates me is my own fear, thought patterns and way of processing information, what do you do? Go.

Well, obviously to me it doesn’t really matter if the clown is scary or not, all it matters is that I SEE HIM AS SCARY AND THAT FEAR CRIPPLES ME. It is not even close to helpful for you to come to me and tell me “Oh come on, you are overreacting, grow a pair, it’s just a clown.” No. This is not going to help me realise that the clown is in fact not scary. All this is going to do is a) externalise the problem and go like “Everybody is stupid, why don’t they freaking see that the clown is really scary and that I am in a very real danger?” and hence not want to cooperate with you or have anything to do with you in any other way, or b) internalise the problem and go like “Oh sh*t, I am seeing things again, I am stupid, I am crazy, nobody understands me, I am the weirdest person on earth, LEAVE ME ALONE AND GO AWAY!!!!” and hence not want to cooperate with you or have anything to do with you in any other way. Which one solved the problem? I may be presumptuous here and jump to conclusions, but I’ll go ahead and say it anyway: NEITHER ONE DID.

So what do you do then? Well, it’s quite simple actually. If I say the clown is scary, then the clown is freaking scary. I know you can’t see that, it doesn’t matter to me one bit BECAUSE I AM SCARED (not because I don’t care about what you think, despite the common perceptions about me) and you try to find out why the hell I find that clown so bloody scary anyway. If you cannot do that, then just try to show me that the clown is not scary TO YOU, that it’s alright, and maybe then I will realise that the clown was not so scary to begin with. Maybe I won’t though because that freaking clown is so freaking crippling to me that I don’t care if you find it easy to deal with or not. That thing is dead scary for all I care and is always going to be. If that’s the case, then you need to be UNDERSTANDING about this. Clearly, I did not choose to spend every day of my life freaking frustrated over the freaking clown, so judging me for it is not going to help. Assuming that I can deal with or will deal with it eventually when I CLEARLY SHOWED YOU THAT I CAN’T, is not going to help. What is going to help, is finding a way to keep me away from the clown. Then again, it may not be forever and such time may come that I will be or feel more capable of dealing with said scary clown. Don’t hold your breath though or place or your hopes on me eventually doing so, because that is so stressful for me, as I am ALWAYS GOING TO FEEL LESS FOR NOT BEING ABLE TO DEAL WITH MY WORST FEARS. When you don’t have to deal with your worst fears, you are not less. You are human. Why are you expecting from me to be more than that? It really is not fair… I know that you want to HELP me deal with my fears, but please do accept that in order for that to be successful it’s going to happen on my own terms and on my own time. It’s very scary and frustrating for me to deal with scary clowns all day, so please accept it…

And finally, please ask yourself why do I have to spend my life running away from scary clowns when everybody around me lives clown-free and happy. Does that seem fair to you? Having to have a lifetime chased by scary clowns? If not, then remove the freaking clowns and leave me be. Accept that IT IS ABSOLUTELY OK FOR ME TO BE HAPPY AND CLOWN-FREE, no matter how much you would have wanted me to beat my fears, chase the clowns away and not be scared anymore YOUR WAY. Accept that I may need to not be scared anymore MY WAY, as your way doesn’t lead anywhere…

Having said all that, do I really need to spell it out for you who those clowns are? Isn’t it obvious already? These clowns are all the things that I am supposed to be doing but I am not. Being expected to talk at a certain age. Being expected to be able to eat every food on the planet without any warning of what my next meal is going to be be made of. Being expected to be able to accept all sorts of change on my schedule and completely hand in the control to you, when at the same time I don’t have any knowledge on what the change is going to consist of. Not being able to hear certain sounds, to be able to function under certain lights, to be able to do wear any clothe you choose for me, to be able to do anything and everything the way others do, when others do or even faster because after all childhood and life is just a race and I do have to win or else I won’t prove myself to you and as a result you won’t love me, or you will always be disappointed of who I am. Do you really sound like a nice person to you under this light? Because I am sorry to break it to you, you don’t sound a nice person to me and, again, to me, you sound like you enjoy sending clowns down my way to chase me, because I am never going to be what you want me to be. And when I tell you I am scared, when I tell you I have fallen and scratched my knee, when I tell you that I’ve sprained my ankle, all you do is call me a cry-baby and tell me that I need to grow a pair. How is that even fair? Why am I always to blame for being different and not fitting in in a society that is always going to send scary clowns down my way???

I don’t have all the answers. And I certainly don’t blame you (it may look that way but I don’t, I really don’t, I still love you even though it hurts sometimes), because I understand that you are CONDITIONED to think this way. This is how it’s happened to everybody else, other people managed to chase their clowns away. Well I’ll have you know that whilst everybody has to an extent scary clowns chasing down after them, other people generally don’t have nearly as many as I do. So what you can do is: a) sit down and curse your damn luck all day that you had to be tied with a person like me who's chased by so many scary clowns but there’s nothing we can do it’s just the way it is so let’s just be miserable for the rest of our lives, b) take all your frustration out on me for having all these clowns down my way as if I don’t have enough problems already by having the clowns chasing me down all day, threatening my well-being and in more cases that you would like to admit my life by asking me to do things in a way that is not made for my system and then always pointing that I am different or c) decide that that’s what it is, it’s not a comment or your skills as a person who has to deal with me or my abilities to cope and overcome my struggles, come down to my level, take my hand and let’s fight those clowns together. Some you, some me, depending on each person's skills and abilities. And I will love you forever.

Stimmin' it away!!! (the amazing world of repetitive behaviours)

A lot of people on the autism spectrum are notorious for their stimming. Stimming is actually, if you ask me, one of the most obvious "symptoms" that people on the autism spectrum may have and gives them all that "crazy" reputation. And this is merely because a neurotypical mind cannot perceive the pleasure received from repetitive behaviours and the endless benefits of it for the autistic brain. Most parents of children on the spectrum I have met (and teachers, let's not forget those) actively try to do whatever is possible to prevent people on the autism spectrum from stimming, especially in public, in an effort to avoid being considered crazy and getting weird looks. I even remember seeing a parent once telling to their autistic child, "Don't do that, Jack, calm down!", when they were stimming. I had to laugh, because they didn't get the oximoron of their statement. Jack was doing that BECAUSE he needed to calm down...

For people on the autism spectrum, stimming of whatever nature is a way to externalise anxiety and generally emotions that have been piling up. It's a way to decompress the brain, calm the nervous system, organise thoughts, etc. It doesn't really matter what it is or how it looks like, as long as it helps the person feel better. And as long as it's not dangerous to them or to others. Stims are something that others need to help the person on the autism spectrum towards developping, not suppressing. This is very, very, very important.

People on the autism spectrum are often seperated into "low-functioning" and "high-functioning" and an important part of this differentiation as I have come to understand it, is actually stimming. Technically the professionals differentiate between the two according to IQ levels, but personally every day I start believing more and more that we cannot efficiently measure a person's IQ level with the current tests available, especially if that person is on the autism spectrum. I think I'll have to come back to that to another post though. So what usually happens, and, admitedly, amongst mostly not very well-informed professionals, is that they will see a child, or a person in general, stim and that behaviour alone will be enough to almost form the image of a "severly challenged" person in their mindset. They do not always, sometimes they do but not always, stay on that observation alone and they do run a number of other tests on the child to assess their speech, their social skills, cognitive skills etc, but their mindset most of the time is set by the time they encounter the stimming: the person is challenged, disabled, needs help, has low IQ. This only worsens when the person/child they "assess" does not communicate with them, appears in their own world and all the other lovely things we autistics do sometimes and are constantly misunderstood.

The ones that are considered to be "high-functioning" on the other hand, are often (again, not always, but often) able to suppress their stims, at least on public places or in front of other people. That, in return, makes them look more normal, so in the eyes of the uneducated, less challenged or "high-functioning". What these people don't realise, however, is the harm that "high-functioning" people do to themselves by trying to hide the stims from the public eye. By not stimming, and this is just a personal observation but I'd like to get other autistics' view on that, your IQ drops. I am not kidding. You become dummer if you don't stim. Because when you don't stim, your anxiety levels go up and I firmly believe that nothing harms the brain more than anxiety. You are not able to function, because all your thoughts are clouded by the anxiety you experience. I have read a few studies here and there that have made such observations and shown some results (in terms of the link between anxiety and intelligence), but it's not really rocket science anyway if you think about it. Try to remember the times you were more stressed in your life. Were you able to think clearly and make the right choices? Unlikely. Some people do cope well under stress, but only because they have found ways to push through it and pile it up and explode later. I have yet to meet a person though that admits that is stressed all the time and it's good for him/her, makes them feel great that they are stressed. And I doubt that anybody else has either.

People on the autism spectrum are likely to experience more stress than anybody else on the planet. Because not only are they stressed about the things everyone is stressed (schoolwork, homework, relationships with others, the future etc.), there are also other numerous reasons that contribute to their stress, such as sensory inputs (sounds, lights, fabrics etc), a lot of information coming at the same time from a lot of different sources (leading to overload), unspoken rules they need to abide with that noone's ever explained to them or they don't understand why they are there, constantly failing other peoples' expectations etc, I could probably go all day. What is also happening to a lot of children on the autism spectrum is that for a lot of reasons (and to be fair, usually not related to their parents' intents), they are exposed to huge amounts of stress very early on in their lives. Their brain at the time needs bits of information little by little to be able to process it and what happens instead is that people overprovide input in every which way and constantly overload them. As a result they experience shutdowns, meltdowns, start to stim and that's when their autism becomes obvious.

Imagine then, if you will, how tortuous is for a brain to always, always, always be exposed to stress. Little by little the brain becomes less and less functioning and loses skills that have been obtained in the past. Then the only way to regulate the stress, the stims, are taken away from the person and the damage becomes permanent. Not because of the autism, but because of a) the stress and b) the lack of understanding of the causes of stress and of effective techniques to deal with it. 

Having said that, I believe that not all people have the same sensitivity to stress. Some people are more stress-sensitive (thus appear more challenged), some are able to metabolize stress easier and get rid of if faster and more effectively. Hence the damages of the constant stress exposure are less obvious to them. I don't know or have a theory as to why, I just think that this could be what's happening.

These things are not written in a book (that I know of). These are purely my personal thoughts and observations I have done by talking to people on the autism spectrum, working with people on the autism spectrum, observing people on the autism spectrum and being on the autism spectrum. And maybe I am wrong. Maybe stress is not really the cause of everything in autism and there are tons of other factors as well. To be fair, there probably are other factors, but I have come to the conclusion that stress is the main one. Maybe I am wrong. But even so, what's the harm in helping a person to live a stress-free life? And why not ACCEPT the fact that different people have different -not less- ways of dealing with stress? You like venting about your day. I like venting about my day too, after I have locked myself in my room with my anime, my stuffed animal and my spiky balls, stimmed all the excess of stress out so that I can actually have a productive conversation. Doesn't harm anybody, so just let me be! ;-)

And with that in mind, parents, carers, teachers, please, please, please don't stop the kids from stimming. In fact, teach them how to stim! If you think that a stim is harmful for them physically, do not stop it completely. Try to find another stim that is not hurting them to replace it. And please, don't judge someone's intelligence level or functionality level on the way or the frequency they stim. Repetitive behaviours are a way of coping and nobody can tell another how to cope. Suggest maybe, but certainly not tell. If it's not harming you and it's not harming them, leave it be. It's not bad. It's something that society will have to learn to accept as a part of each person's character, or even quorkiness if that makes you feel any better. I am a master's student, I work, I earn my own money, I live indipendently, I am considered good at what I do by the people in my field and I still stim. Stimming hasn't prevented me from anything. Neither has autism. 

And with that in mind, I publically acknowledge an autistic person's right to stim and present to you a list of some of my stims. Enjoy! :-)

I do this with my lips whenever I want to think or feel like I am in a difficult situation and it really helps me focus:

I don't know how other people perceive it, or even if they notice it when it happens, but for me, it's very helpful. I do it when I am alone most of the time, but if I am in a situation where I have to think, I have to, HAVE TO do it. I have tried to stop myself from doing it, firstly because I was too self-concious and embarassed and another time as a sort of experiment with myself and it just doesn't work. It doensn't work! If I stop myself from stimming, I stop myself from thinking. As simple as that. Even as I type this, I have to stop every once in a while, do it for a few seconds to organise what I have to write next. It's necessary for me, otherwise my brain doesn't work.

Another stim I do is this:

 

(which, for some reason, I would only record upside down, but you get the gist)

The first part of the video is what I do pretty much all the time when my hands are not occupied by something else, the second is what I do when I get very intense emotions of any kind, but especially anxiety. I don't know if you can tell from the video, but it's basically what I do in the first part, just more intensely and with more of a hand movement rather than just the fingers.

These are not all the stims I do, I also rock from time to time, the way I like to rock is putting my foot against the wall and moving the chair back and forth with my foot when the chair's standing on its two back legs (a bit dangerous, I know, but I am careful when I do it so I've never fallen off), I jump when excited, I've been known to have my happy dance and a lot of other things that come and go from time to time. Another thing that really helps me with my sensory input, is my personal collection of spiky balls:

Words cannot describe how much I LOVE these balls. I love them so much that I've actually named them: The red one is Wallie the ballie, the yellow one is Wallie's big brother and the blue one is Wallie's dad. I want to get Wallie's aunt from Amazon at some point (which looks like this)

as well as the twin cousins:

and generally have a neat little collection of spiky balls. The reason that only Wallie has a name, is that Wallie is the one I have the most emotional attachment to. Wallie goes everywhere with me. As he is the smallest, he is always in my purse, I always hold him in my hands when I go out and I always, always, always fiddle with Wallie when I am alone. I cannot go to sleep unless I have Wallie on my hand and if I relax during the night and let go, I may actually wake up and look for it. Especially when I am not having good days. The brother is the one I hold when I need something bigger, usually when I am watching anime and need something to hold with both hands and the dad is always on the floor, as I like to rub my foot against him when I sit down. They really really help me focus, relax, concentrate and generally not lose it when things get hard.

So go team stim!!! Stim it away aspies! Stims rock! Autism does too!!! :-D

The most special of my special interests: Autism

The first-ever person with autism I even met was a 10 year-old-girl girl with severe, non-verbal, low-functioning autism. The terms are used purposely, because that's how the girl was described to me at the time! Me and another volunteer were supposed to meet K and her mother at a coffee house next to a playground. When we got there, K was sitting on a swing, constantly moving her head from right to left and back and her mother was standing next to her. Thankfully the other volunteer was more socially capable than me so during the meetings she would keep the mother company and I would play with K. It got to the point that I didn't even talk to the mom (other than a quick "hello") when we first met, I just rushed to K and started playing with her. I was told that K didn't engage, didn't enjoy other people, wouldn't play. Yet she could probably let me tickle her for hours!!! And every time I stopped she would take my hands and put them to her belly so I could go again. She would run to a swing and I would swing her for as long as my hands got tired! We would walk hand in hand by the seaside and I would talk, even though I was told that she can't process speech and I had no confirmation that she listened (or that she didn't think "Oh god, just shut up!!! :P ) Soon nothing K did looked strange to me and I was very frustrated by the fact that everything she did had a "scientific" name. Tickling and swinging didn't count as games, because they were "sensory" pleasing. Yet, again to me, every child loved swinging and tickling! But no, she couldn't share attention, follow rules or play pretend, so she couldn't play. I wouldn't get these things. Surely games are whatever makes you have fun! Why should certain things make you have fun? Fun is fun, no matter how you have it! That was what I now like to call my pre-developmental psychology thinking!

That summer I went to a "special needs camp" for the first time. Special needs camps were places were people with special needs could go for 15 days during the summer to have a bit of a vacation by the sea and give their family a chance to relax from their presence. Again, their words, not mine. Looking back to it the public one I went for the first two years was stone cold abuse of the fact that people with SEN couldn't speak for themselves. They just locked us away, literally, in a place with tents and a gate to a beach that had a ramp and served us funny tasting food three times a day. Literally. Nothing else happened. It was the summer version of institutionalisation basically! Anyway, I was assigned to four people I had to dress, feed, wash and generally take care of for 15 days. Three of them were adults and one of them was a 10-year-old crazily hyperactice child on the autism spectrum. That kid became a love and an obsession for the next three years of my life.

The general experience was a total nightmare so I won't get too much into it. I have no idea under what logic on earth they expected an 18-year-old they had interviewed for three minutes to take complete care of four freaking people. The funniest bit of all was that one of my adults had CP so he had to be assisted to walk and the 10-year-old was hyperactive. So basically I had to wait for the one whilst chasing the other all day long, whilst having one of the others behind me all the time asking me questions I didn't have the heart to ignore and remebering to check on the forth. I couldn't multitask much.... I still can't. To this day, I have no idea how I did it. I still consider it one of life's miracles. Even if at the end the parents ended up hating me for losing too many pairs of socks and returning too many clothes "ruined" (with bleach on them) from the constantly cleaned toilet floor.

But that horrible experience changed my life. I returned from there OBSESSED with little G, repeating his little funny echolalic phrases to EVERYBODY and constantly talking to everybody about how he did this and that. The little brat didn't let me sleep for 15 days. We were sleeping holding hands so that I would now if he ever tried to get up because he could get out of the tent and out of the camping in seconds. He would let go of my hand because he turned side in his sleep and I would gasp in my sleep, popping out of the bed drenched in cold sweat in the fear he would run away. I stepped on an archin one time because I had to run back into the sea and be next to him while he was trying to reach the buoys that marked how far we could go (he was obsessed with them). I swear I broke the swimming world record that day... :P For the entire summer after camp I would wake my flatmate in the middle of the night because I would shout his name in my sleep in panic that he went away. But I fell in love with that kid. I deeply and honestly did. I owe him so much, because he reminded me how it feels to be obsessed with something again: he woke the special interest monster!

7 years later and I still can't stop talking about that kid! I met a ton of children with autism since each of which holds a VERY special place in my heart, but I guess that first, raw experience that I had before all the knowledge and all the reading is bound to be even more special. But there's one more thing that happened with him that I will probably never forget. Little G used only repetitive, echolalic speech. At least that what everybody thought/knew. He would say "You want the bottle" instead of "I want the bottle" and all those little things that children with autism do and we all know (and love? I know I do!). During camp days, he developped a fascination on a 29-year-old man's with Down syndrome feet. He would go touch them and he would shout at him endlessly and G would laugh. One other carer from there then told me that if he continues to upset the other man (who was also under my care), he would have a hear attack because "Down's have a sensitive heart and he's close to his age-limit - Down's don't live more than 30". In my literal and panicky head that instantly got translated to me conspiring to murder. I mean he would die and my lack of ability to control the kid I was RESPONSIBLE for would be to blame.

What followed wasn't one of my proudest moments as a teacher for children with autism, but it changed my perception about autism forever. From that moment on nobody could convince me that children with autism didn't have empathy, didn't understand emotions or couldn't articulate what they felt. One evening he did it again: and the man started crying. Now in order to understand the next bit you have to keep in mind that I was acting instictively and whatever happened was before I knew anything about autism other than my own experience. I ran over there, in panic, asked one of the other carers to calm the other man down and grabed little G by the hand. I dragged him to a closeby bench while the poor thing was still in half shock-half guilt for what happened. I told him that we were going to sit there until he understands perfectly that he CAN'T do that again no matter how much he wants to and until he promises me that he won't. He told me that he has to go pee (he asked for the bathroom every ten minutes, mostly to get a chance to walk around but thinking back to it it was entirely possible that he couldn't control his bladder too) but I told him that we won't leave the bench until he promises and I don't care what he says. He did, immediately. He said "I promise". And we went to the bathroom.

After he got out of the bathroom,  I was still pretty pissed at him but mostly I was stresssed. I probably was at my limit in general.... He came towards me with his trousers still down because I always helped him pull them up. I reached to get them this time too, but before I got the chance he ran at me first. He hugged me so hard, my ribs started to hurt. He started crying, loudly and repeatedly. He cried for a few minutes as he still grabbed me and I didn't know what to do. But then he gave me the final blow: "You don't love me!" he said. No echolalia. "You" meant me and "me" meant him. My heart broke into a thousand pieces when I heard that and tears came to my eyes too. I came down to his level (he let me go after that), looked him in the eyes (we made perfect eye contact) and I told him "OF COURSE I love you! I do! I love you! And it's because I love and I know what a good heart you have and I want everybody else to see it too that I told you all these things!!!!" It was the truth. 100% of it. That moment I realised that his trousers were still down... I pulled them up. He hugged me again. I hugged him back. We never had to argue about anything again...

When I told people what happened they didn't believe me much, apart from a friend of mine. They thought I overglorified the story. Next term we had our "Introduction to autism" course at the university and I told the lecturer (who knew that boy) what happened as soon as I saw her, I was dying to know what it meant. She told me that in rare occasions people with autism can step outside of their "autism" and be like normal people for a while, sharing emotions and such. To this day, it's probably the most bizarre explanation I've heard. I knew it didn't make sense as soon as I heard it. I still don't know what made little G react like that.... I went to his school a couple of months later, expecting that he wouldn't remember me at all for some reason. He took a quick look at me, locked himself in the gym and started running around whilst laughing loudly. I didn't need any more validation. He did remeber me...

This is what autism is for me. I had tons of these moments with a lot of different children after that, I still do. People told me that teaching children with autism has an expiration date, it's so hard that you can't do it for the rest of your life... I could NEVER see myself doing something else. Everytime I get tired (and it's usually by not related to children stuff) memories like this make me remember why I am doing this. And I remember what my life purpose is. And it puts a smile on my face...

How my ability to hyperfocus and my special interests saved my life: Part 2

So where were we? Oh yes! The "learn all about the sea" time of my life! Around that time our teacher at school had an interesting habit: he would ask as to bring whatever information we could, from encyclopaedias (internet use wasn't that common around then- it was around the time where internet connection costed as much as long distance phone calls and phone companies hadn't started their offers), to read to the class. It was my favourite thing to do. I would sit every chance I got, I would search anything related in the encyclopaedia and I would sit down and copy any information I could, to read it to the class. But mostly, because it was freaking interesting. My fascination about the sea lasted a while, only to be replaced by all the info on the human body.

Recently my mum and I found my primary school yearbook at the back of a cupboard. At the question "What do you want to do when you grow up?" I had answered: "I want to be a teacher, because I like kids. But also I want to be a neurologist, because I am fascinated by the human brain!" 6-7 years later, I ended up in a course that had a bit of both: and the lectures I never missed (and still remember by heart) were those that had to do with the brain and the neurons. And they say you never know what you want to be as a child... 12 years after that time and I am still fascinated by the same two things: children/children's development and the human brain.

My adolescent years were dark. Very dark. Productive learning and information storing were substituted by the stress of never feeling and the confusing realisation that talking insessively about what interests you to your peers is not considered "cool" anymore. But I couldn't think about stuff and not talk about them, it was just impossible, I wouldn't control the compulsion. So I stopped thinking about stuff. I stopped thinking about anything that interested me. Sure, I would still develop fascinations for a short period of time (like astronomy for example) but my brain would soon switch to "copying mode" which, to put it simply, was the order "don't talk, just nod" and every will to live, along with the excitement that the thought of new knowledge would give me, would go away. And I would cry myself to sleep every night.

I think that the only serene places, apart from my home, that made any sense to me at the time were my afternoon language courses. Foreign languages and other cultures were a fascination of mine, one that was early picked up by my mother and reinforced as much as possible. I started learning English (of course my mother tongue is Greek) at the age of 8 and French at the age of 11. Soon my parents realised that group courses just weren't my thing and eventually there was a slow transport to one-to-one lessons. Those lessons were probably the happiest non-family related memories of my childhood. I was very good at "listening" because I can pick up accents and words by ear very easily. To my mind it's not that very different process with the echolalia traditionally linked to autism because I wouldn't, necessarily, understand what I heard. I could just identify similar sounds that happened to be words and hence I was good at "listening". Even now, if asked, I can tell you the lyrics of a respectable number of Japanese songs, without necessarily knowing what every phrase means. I never took a Japanese lesson in my life, yet I was able to decode a number of phrases and words and even use them in a new concept/in new combinations just because I've watched a ton of anime and hear their theme songs in a loop everywhere I am. That's just how my brain works.

Anyway, another thing that I learned at school, and not the easy way, was that I was different. That slowly, but steadily, developped to a never-loudly-admitted fascination by anything/anybody that was different or a specific sub-cultural group. Muslims. Immigrants. Metalheads. People with special needs. I slowly became obsessed to find the patterns according to which people identified difference. Even more so, because I didn't fit any of them! I wasn't a muslim, I wasn't an immigrant, I wasn't a metalhead (yet) and I didn't have special needs (or did I?) so why on earth did I stand out so much? My logic was getting me nowhere: and the only logical explanation was that I didn't have the necessary information to answer the question, which tormented all my being. But I needed that answer!!!! So I slowly convinced myself that it was of the next best thing: I was different because I was a priest's daughter. And I needed an identity SO MUCH that that realisation soon became my whole being. I TRIED to become my own false thought process. But that's again another blog post by itself.

Around fifteen I decided to become a psychologist for people with special needs. I have no idea why I decided that, I have no idea how it came to me all I know is that at the time I told myself that it was divine inspiration, because the thought came to me at church and I used to translate religion rules very literally. And I was told that nobody can understand divine inspiration (plus I was too depressed to try) so I accepted it. God wanted me to engage with people with special needs. So be it.

I don't want to get too much into detail at what happened during the next three years because it was a quite dark and painful time for me, even more than those before them. All I am going to say is that this realisation lead me into choosing the appropriate "direction" in high school that would lead me to it, half the way I forgot it and I thought I wanted to become a lawyer because they told me to aim for the highest school and that was the highest one but then I gave my national exams. And I am not going to get into detail about how the Greek ranking system works, but I didn't have the grades to get into law school (by default even, which was even more frustrated) so I got kind of lost....

After dealing with (some of) the stress and the frustration of not having the perfect score, I had a quiet talk with myself on what on earth was I going to do next. And whilst helping a friend make their choice of schools, it came to me: "Department of special educational needs". I remember that after that my brain stopped for a while. It just did. And suddenly everything went back in place. I hadn't felt that kind of serenity in years! I remember that after looking at the universities my friend and I watched a movie. I still remember it was a Jenniffer Garner one, but I have no idea which or what happened. All my mind could think about during the whole thing was "Department of special educational needs". After my friend left, I went in the kitchen and announced it to my startled and shocked parents. For them, it came out of nowhere. I had NEVER mentioned it before. I didn't even know that the freaking thing existed until a week before then!

After my really convincing and mature arguments (if you don't let me go there I am going to leave, go study by myself and never talk to you again) my parents agreed to let me go. It's not that they didn't want to in the first place, I think it was the fact that I had NEVER mentioned it before that had them so confused as to my sudden decisiveness! I never regretted that choice and I don't think I EVER will. It was the smartest decision I even made. During my first semester, I found out about this volunteering program with children with "autism". "Autism?" What is autism? Yes, I had no idea what autism was. I had to turn 18 and enroll in a special educational needs course to even hear the word "autism". I decided to enroll to the program simply because autism was going to be in my curriculum the following years and it would be nice to know what we were going to talk about in advance. Soon after, I met my first-ever child with autism: a 10-year-old girl with non-verbal "low-fuctioning" (have I told you I hate that term????) autism. But hey, that's probably another post by itself!!! :)

How my ability to hyperfocus and my special interests saved my life: part 1

People on the autism spectrum are notorious for having narrow and, at times, unexpected special interests which we prefer to call "special". It's also said that part of the reason why girls on the autism spectrum stand out less because their special interests are less "weird" and more gender appropriate. I don't know how weird is measured or what is considered gender appropriate sometimes (because in my experience no other girl I knew liked to talk about dolphins, coral reefs, living on deserted islands or the novels of Jules Verne) but one thing is for sure: I had both narrowed and unexpected interests as a kid, teenager, adult and I probably will, for the rest of my life. They were my anchor during hard times and put a smile on my face at the end of every single day. And knowing that I wouldn't have had them if I weren't autistic, I am SO glad that I am and I get to have them. The feeling of finding out something new that suddenly makes your heart race much like it does when you fall in love, the excitement of learning new interesting facts about it as you begin to research, the calming feeling you have when it pops in your head when you feel weird and out of place are things that I love about having special interests. And I wouldn't change them for the world.

The first special interest that I remember is a book called "The high mountains" by the greek writer Zacharias Papantoniou. My mom gave it to me after the summer of the first grade (when I was about 6 and a half) and I read the whole thing in two or three days. It was a big book and I remember feeling like I had to push myself to keep going because decoding that many words this fast was still not a natural thing for me, after all my peers were still reading children's fairy tales that had three sentences and a big picture in every page, which I always found completely frustrating. So after I was done I rushed to my mum, jumped around her and shouted "I finished it, I finished it!". She's a teacher so she knew that there's no way a child my age could finish a book this big that fast, so she said "I bet you did a sloppy reading, there's no way you remember anything that's written in there!" and I gave her the book and I told her "you are wrong, I remember every single page! Test me!" and she did. And of course, I was right. She said "huh!" and I remember her frowing her eyebrows with confusion. It was the best feeling in the world. I had just outsmarted an adult for the first time. I did not need to be told that I did a good job: I knew I did a good job. So then I asked her: "Ok, well, what's next?" and she didn't have an answer to that because that book was supposed to keep me occupied through the whole summer. Thankfully I was raised in a family of bookworms and books were never short around us! So sooner or later the next step was in my hands. And then the next. And the next. And before I knew it, I had read the entire bookcase. 

My obsessive reading of books continued like this for the next few years. I would take a book in my hands and dive in its magical world every chance I got. And once I did, everything around me including my own thoughts would get tuned out. Here's a fun little story of how much that would happen that has become an amusing piece of memorabilia where I grew up:

"When I was around 10, we moved to a new house in a new area where constructions were still happening. The house was big, much bigger than the one we used to live in, which for my brothers and me meant more playground/exploring space. There was even a basement: oh the possibilities! So one day my brother and I went down to the basement to explore and decide what we are going to do with the place. We were down there for a while when my brother said "I dare you to lock me in that room from the outside" (oh, by the way, NEVER play dare with an autistic. I may have to do an entire post on just that). Looking back to it I think he expected me to know just how far the prank had to go. Well, I didn't. So I told him "ok" and I locked him in. I asked him what do I have to do next and he said "Go upstairs and come in a bit to unlock me" and I said again "ok", went upstairs and grabed a book. Enormous mistake!!! From the time that book opened, the time just stopped and I was back to my magical little universe. And my brother ended up staying in that basement room locked for three hours. At some point he realised that I wasn't gonna go let him out, so he decided to break the door. My parents heard the noise and started wondering where it came from, gradually getting worried. They hadn't looked for my brother yet because it was still the middle of the afternoon and he was supposed to play outside still, but that banging was really frustrating them. So my dad came in my room and asked me if I had any idea where this banging could come from. I answered "I don't know dad, there are constructions happening all around us, there's banging all day long!" and got back to my book. I had completely forgotten what happened before I opened my book. I was on a whole other planet!"

Anyway, back to the special interests. I was obsessed with reading books up until I had read the entire library. At some point through that process I got obsessed with every book that included an adventure in a far away land (mostly Jules Verne's books and some other mystery books) or a stranded island (like Robinson Cruise and Swiss family Robinsons: I must have read that book a MILLION times). In fact I was so fascinated by the concept of stranded islands that at some point I tried to figure out ways to make it happen for myself and my family. The thought process went something like that: 

a) put them all on a ship on the pretence of vacations

b) drive the ship through a storm and sink it close to a stranded island

c) save them all along with the remainders of the ship and start a new life on that very island by yourselves. Job done!

Looking back to it, it makes perfect sense that I wanted that. I wanted to find a way to keep the only part of my life that made any sense to me, made me feel happy and safe: my family. But that should probably be another blog post all by itself.

My special interests changed after I finished all the books on the library around literature: one reason was that by that time school started teaching us actual interesting stuff (like physics and geography and about whales), so I switced to reading about factual things. The other reason is that I didn't know how to get my hands on more books. The school library was out the question because once I got my hands on a book, there was no guarantee that I would ever want to let it go (there still isn't). If I asked my parents I would have to get through a debate that involved me finding arguments (aka formulating words) under stress, which, no can't do. So no thank you. I prefered to sink in my frustration and slight bit of depression instead.

So around that time my interest switched to Jacques-Yves Cousteau and his diving adventures that were illustrated in a series of comic books my mother had bought for us. And from that to "the encyclopaedia of the sea" a series of books that again my mother bought around that time. I wanted to know all about coral reefs, dolphins, whales, see turtles and the sort. But oooooh! look at the time. I got side-tracked: again! So I have to go. I promise the part two won't take long! Later lovelies! :)

Redefining autism: Let's set the record straight.

If you ever went to a Greek high school and followed what is called the “theoretical” direction, which you probably didn’t, you would have been exposed to the great wisdom of the Greek philosophers to the point of several headaches. And not because they are important and awesome, but because they are the studying material for the national exams that gives you access to university.

That’s pretty much how I spent my last two years of high school in Greece, me and almost every other adolescent my age. As an aspie that made no sense whatsoever to me, but luckily the Greek philosophers were extremely interesting, so I was tempted to read them. Otherwise I would have failed at my exams and would have made it as a political statement against the system, because that’s the kind of adolescent I was.

So why are Greek philosophers interesting and relevant to the subject of this blog? Because they, well, not all of them but Socrates did, always started their discussions with a definition. A definition about what they were going to talk. In fact in Plato’s “Symposium”, they spend more time defining things than they spend actually discussing them and that’s why that book was freaking interesting. Because if you give me a definition, then we have something to work with. True, the discussion is probably going to go down like it did in the Symposium because I am going to pester you more about why you are defining what you are defining the way you are defining it rather than actually talking about the defined, but as you are going to find out I am only going to do that because you and I, and dare I say every person on the spectrum, use the same words as NT’s do express very different things. And consequently, we never understand each other. It’s merely a language problem. Merely though in this sentence is an understatement, because our language wouldn’t be this different if our internal perceptions weren’t that different. Therefore our very deep internal differences are reflected in our language use, as only natural. So, without further ado, here is what I mean when I use some words that you are going to stumble a lot upon in this book.

And yes, I am going to attempt to explain a very complex and emotionally charged word/concept: Autism. As you probably already know, this word is very, very, very difficult to define. I should know, I am doing a discourse analysis of the different contexts that word means different things to different people. For parents of children with “low-functioning” autism (I HATE that term but it’s the easiest way for you to understand which parents I am referring to) and for doctors who diagnose autism at 18 months of age, autism is perpetual social anxiety, communication challenges, acute sensory difficulties, children that will NEVER be verbal, potty trained or independent in their lives. God knows how many unfortunate parents have heard that description of autism for their children and how many doctors DAILY still say, “I am really sorry, your son/daughter is autistic”.

On the other hand, there is now (thankfully) a growing community of parents, people on the autism spectrum and professionals that do not share that approach and present autism as a positive thing, emphasise on the assets and argue that they overcome the challenges. And there is of course a number of people that jump from the one end to the other, from the despair of the medical disability to the hope that “something can be done”.

I don’t subscribe to either of them. Admittedly I lean towards a more positive approach, but I try to maintain a generally positive attitude about life and autism is part of life. But if you ask me about myself, I am not awesome because I am autistic. I am awesome because I am awesome, end of story. I don’t need to present my autism as my awesomeness because, from what I came to understand, that’s sugar coating the fact that autism is a disability. And I don’t like that idea any more than I like the idea of disability in general. Autism is NOT a disability. Autism is NOT an asset either. Autism just is. What you choose to make of it and how you choose to see it, is up to you entirely. If you were to say “I think that autism is an acute brain dysfunction that can only be cured with hospitalization and isolation from the world because it can be EXTREMELY draining to the lives of those around it”, I would be fine with it. You know why? Because you would have started the sentence with “I think”. And you can think whatever you want, that doesn’t make it true or an accurate definition. So what I would say to parents of children with autism is: “Let’s all help the child use his/her autism as an asset”.

So what is autism then? If you take a look at the DSM-V, you will find “Autism Spectrum Disorders” defined as difficulties in social communication, difficulties in social interaction and sensory issues. But DSM is a diagnostic manual and as such it doesn’t say what autism IS (even though it claims it does), it says how autism can be SPOTTED and DIAGNOSED. Those are two different things and the realisation of that is critical if we are going to talk about autism any further in here.

Autism is looking at the tree before you see the forest. If you are autistic you are going to deduce that there is a forest in front of you because you will have noticed that there are a lot of trees in a row, not expect to see trees because you saw something that looked like a forest in the distance. It probably doesn’t make much sense stated like that, so see it like this: an autistic person’s view is like a spying glass. Round, focused and limited. I am going to notice every detail of the wings of the butterfly that sits on the first flower in the beginning of the forest before I move to the second flower, the third flower, the first tree, the second tree and so on, analysing EVERYTHING I see as I go on. Sure, it will take me years to go to the end of the forest, something that you can do in an hour, but by the time I get there, I will have the knowledge necessary to right a freaking PhD thesis about that forest. All you will have seen is a bunch of trees and plants. But you will have gotten the job “done” if the job was “get to the end of the forest”.

A good way to understand an autistic person’s view of the world is by comparing it to a blind person’s. It has been often stated that autism is “mind blindness” and, in the way I am going to use it, I think it’s a quite accurate description. When a blind person enters a new room, they have to go around it touching everything, so that they will know where everything is. After having touched everything, they are able to form a mental image in their heads of where is what and as a result be able to move around in that space. That is what happens in EVERY SITUATION in the life of a person with autism. We see the little parts and then need time to put the puzzle together. If the pieces fit and we haven’t missed anything that is.

Now, two variables are important to that: TIME and SEE. If I can’t see something, it doesn’t exist. Before I moved to UK I had a fiery argument with my mother about whether or not I am going to pack really heavy stack of paper for my printer. According to her, admittedly reasonable, arguments there was no point to bringing a heavy stack of paper with me that I would pay its weight in gold at the airport, since I was going to “a civilised country and not in the middle of the desert”. One might think that, but my counter argument was that I don’t know where they sell the paper there, so I won’t know how to get any and then there is no point of me getting my printer because I wouldn’t be able to print anything if I needed it anyway. And I was proven right, because seven months later I still don’t know where you buy printing paper in this country. I haven’t seen it. For all I know, and although reason states otherwise, it doesn’t exist. And if a simple stack of paper can create such a mess in my head, imagine what kind of chaos can happen if we start talking about things that “don’t exist” by definition, things that are abstract, like emotions or social rules, that can be there regardless of the situation or whether you can spot them or not. The horror!

The other thing is time. I need time to get things done and just because you can’t see the reason for that doesn’t mean that it doesn’t exist. If I were blind you wouldn’t point your finger to a building on the street and shout “look!” as you were trying to make a point. In fact if you did you would probably either feel terribly or be considered as tremendously insensitive because poor me couldn’t see. It’s the same thing with autism. Expecting me to do something as fast as other people do is not only impossible, I would go as far as to call it abusive. I need a lot more time to do things, because I examine A LOT more details than anybody else to get something done. I cannot do two things at the same time because it’s like asking me to read one book with my right eye and another one with the other and be able to process both at the same time. It simply cannot be done. I am going to do one thing, but I am going to do it perfectly. So know what you are asking of me to do before you ask it.

I am not by all means saying don’t ask me to do things. I don’t want you to see me as an incapable person that is unable of being productive. I am just asking you to be appreciative of how much effort is required to do what you are asking me to do. That way you will also respect me when I reach my limits and consequently react in a way that you do not understand (a.k.a have a meltdown “out of nowhere”). You are not going to wonder “what suddenly possessed me” (the answer to which is of course nothing, you just ignored the effort I’ve made to get to that point) when I just won’t be able to cope anymore.

I think that the above, admittedly lengthy, definition of autism covers all the challenges of the spectrum and can be considered unanimous and applicable to everyone. It can explain, if I may say so myself, all the little, or big, behaviours that autistic people do and nobody understands why. Maybe sensory sensitivities/overload would need further elaboration, but you now what they say, always keep them wanting more! ;) Later lovelies! :)

If we were all autistic

I  can't help but wonder sometimes... How would the world be if autism was the normality? Here's some things I came up with...

If we were all autistic, language acquisition wouldn't be considered a major toddler milestone. It would be widely understood that some people get there and some people don't and it would be a culturally accepted fact. Also language acquisition wouldn't be considered a necessary trait but rather a characteristic of some people, like blue eyes, or freckles. Some people would have it, some wouldn't. Either way it wouldn't matter.

As a consequence of that, a lot of alternative communication systems would be encouraged and the world would have made a lot of progress on that. Also people would take lessons to learn to understand different communication systems (e.g. pictures, sign language or even stimming) much like they do now with the different languages, since those would be considered culturally alternative forms of communication.

We wouldn't have phone calls. People would only communicate through texts and e-mails, since it would be widely accepted that information processing is very hard over the phone.

Chronological age wouldn't matter: people would be aged by their developmental age, which would not be linear but rather switch from old to young with no specific pattern. And of course that wouldn't matter, because it would be perfectly acceptable to be whatever age you want.

Everyone would work. Even two year-old children. Not for eight hours but for some hours a day and on their special interest. And everyone would get paid. And no, it wouldn't be consider "exploitation" to make little children work, because they would do something they enjoy for three hours and get paid for it. So if a child had a fixation with lining things up, for example, it would work with something relevant to that. Of course the complex levels of the jobs would vary according to someone's developmental age, so people with lower developmental ages would be given more simple and more structrured stuff. But if someone with a higher developmental age who was for example a supervisor would suddenly get overwhelmed by the task it would be perfectly ok for him/her to switch to a lower developmental task for a few days. It would be perfectly acceptable.

Schools wouldn't teach knowledge. Instead children would be grouped according to their special interests and would be taught things related to them, as it would be widely acknowledged that this would be the only way to keep them engaged. This would be a normality. The education debates would be on how to teach children with unsual special interests: you know, those (generally) who wouldn't like trains or dinosaurs or literature. All the other information (reading, counting etc) would be considered as naturally developping and would not require seperate teaching: it would be learned through the process of engaging with one's special interest.

Self-teaching would be encouraged, in fact it would be a lesson in the curriculum. All schools would have huge libraries, computers and rich databases and children would be encouraged to search them in order to find things that interest them to engage with. Then they would be encouraged to either proceed in learning about it alone, or form small groups with other people with the same interest. In certain cases those groups would be used socially, to teach children that they should also listen and not only talk.

Self care skills would be considered a valuable lesson to learn and children would spend time on learning how to organise their time, space and thoughts. Social skills would majorly revolve around respecting each others boundaries and making the children understand that other people might perhaps be annoyed by what they are doing. NOTHING would be considered a given or self-explanatory.

Every conversation, in and out of school, would start with the phrase "Permission to start interaction" and said permission would have to be granted from the other person in order for the interaction to start. If the receiver of the inteaction didn't give permission for it to start, s/he wouldn't be considered rude. Instead, if the exchange of the interaction was urgent the starter of the information would have to give the receiver a note (in physical or electronical form) with everything he had to say.

The world would be a much less sensory overloading place. Houses would be much better sound proofed and every light would have a dimmer switch. Clothes would be categorised according to their feel and concepts of "matching" wouldn't be prioritised. Public transportation would be consisted of cubicles where people would stay in until they reach their destination. No people would be allowed on a public transport once all the cubicles were full.

Market wouldn't be as big: multi-billion dollar industries like the clothe industry or the food industry wouldn't even exist, because people would wear and eat very specific things. In fact it would probably be more versatile as gadgets and fiddly toys would have more of a value than clothes and jewellery. Techological gadgets would probably be sold at the same, if not bigger, rate.

Other concepts would develop simirarly: fixations, sensory sensitivities, physical distance and stuff like that would be the normality, the culture.

So how would neurotypical people feel in a society like that? I would guess that they would feel exactly like autistics feel in ours. They would feel miserable, because they would get 100 "interaction denied" responses from people they tried to engage to small talk with. They would feel ashamed, because people would often think of them as creatures who talk with nothing to say. They would crave for more sensory stimulation, only they wouldn't be able to get it, because there would be no places catering their needs and if there were, they would probably have to go in the middle of nowhere to find them, so that autistics won't be disturbed by them. They would feel crazy for wanting to change their clothes, games and other stuff every few months because they are bored of them. Having a neurotypical child would be considered a major EXPENSE of the family, because of behaviours like these. Imagine two autistic parents having their child scream "but I want new toyyyyysss....!!!" every now and then. They would get sensory overwhelmed and this behaviour would be considered a "meltdown". People would feel sorry for them for having to bear that cross.

As if those weren't troublesome enough already, neurotypicals would never say what they mean but people would take what they say literally, so they would never get any of their actual needs met. Nobody would want to be close to them, for fear of having millions of conversation requests from them, so they would be miserable and alone: people would be afraid of them, they would not understand them. Slowly, they would dive into depression, they wouldn't want to leave the house and they would end up non-productive and institutionalised.

So there you have it. A reverse reality that is, in its core, what people on the autism spectrum have to face every day. We are not disordered. We are a minority.

I wish I was more autistic.

Ι wish I was more autistic.

That's probably a confusing and even ungrateful statement for a lot of people to process. If any parents of children with autism read it are going to be frustrated, to say the least. Especially if they know me in real life and they have seen the bubbly, funny, optimistic side of me, the side that knods and repeats "I see" every time they described another trouble, worry and concern about their children with autism. I didn't lie then... I did see. I could feel their frustration and it only frustrated me even more, because I didn't see their children the way they did and I couldn't tell them that, not without sounding condescending, over-optimistic or generally making them feel like crappy parents, even though I NEVER thought they were. Even so, that's how I feel. And if people decide to react negatively to it, well, that would be my cross to bear as well.

But let me explain what I mean by "I wish I could be more autistic".
I wish I had less of a social understanding than I do. I wish I was less obsessed in the past in understanding the world I live in, I wish I was less interested now too, I wish it didn't matter for me. I wish I saw less things. I wish I "got" less things. I wish I was less socially aware. Because I see too much, I do. I am obsessed with identifying patterns of behaviour in people and figuring out the way they react and why they react that way because that, to me, is often exciting, like playing a giant sudoku. What I encounter in the process, however, is frustrating, to say the least.
The times I've seen misunderstandings been created over, what it seems to me, nothing.
The times I've seen people, nice people, drift apart over trivialities and stupid/flawed thought processes.
The times I've lost people over my inability to explain myself and my behaviour and their "just not getting it". Which was all stupid misunderstandings in the end. They did contribute to the forming of my current social understanding, but did they contribute to making me happier? I seriously doubt it sometimes... So I wish I hadn't been through all this trouble. I wish my brain had rejected all this information. I wish I hadn't let all those people in my world. I wish I was more autistic.

I wish my behaviour was more autistic too. I wish people could tell easier. I think the biggest challenge of my life was that people couldn't tell. And they still can't... Nobody can know all this hell that happens in my head, because in the end I smile and maintain eye contact (even thought I am counting the lines in their iris :P ) . Who cares that every time I go out I return home with a killer headache and am unable to function all afternoon? Who cares that I lock myself in the shower, shove my fingers in my ears and start crying because the maintenance stuff decided to cut the lawn outside my window or my flatmate decided to walk up and down the corridor outside my room in heels (AGAIN!)? Who cares that my boyfriend calls and I am crying looking at the phone and BEGGING myself to answer it but I just can't (even though he is one of the most understanding people I know) because I know that the only words that will come out of my mouth with be "adablublah flabdidarblumblum", because my brain can't formulate words under stress? Who cares that when all these things happened to me as a child I was hiding under my blanket pretending I was sleeping until the haze in my head went away and I was often too quiet for a mum of five to realise? And when I did have meltdowns I ended up upsetting everyone in the house or seeing the puzzled faces of my sibling that were wondering "what the hell happened now" because nobody could predict what would set me off. Nobody cares about that stuff. Nobody cares about things that they don't see. So I wish I was more autistic. So that I could shove my behaviour down people's throats and show that I have struggles. And I need HELP!

Sometimes I think that if I were more autistic people would have more realistic expectations of me. Sometimes I even think that people who are more autistic than me get more respect for their needs than I do from the autism community. Not the world, (by all means not the world) the closed little community I chose to surround myself with. And sometimes I think that it's my fault for being so determined to always present as a functioning little girl that has everything figured out and for KNOWING how to do it, due to extensive studying for being a human. Sometimes I wish I could twirl on the floor and shout "noooooo, go away!!!!!" everytime something annoys me the way the little boy I work with does, because hopefully that would make my point come across. And yes, people would think I am mental, but at least they would understand that I am a mental with a point and they would accomodate my needs.

So no, I don't mind that I am autistic. In fact I wish I was more of it because in my case hiding my autism has made a serious damage to my mental, and to an extend physical, health. I by no means suggest that people who are more obviously autistic have it easier than me, I have no way of knowing how easy everyone else has it or how they feel about themselves and their differencies. I am still trying to figure out how I am feeling about myself. And I don't advise anybody else to start appearing more autistic because it's not my place to give such advice. I think that everybody should do whatever the hell makes them feel better, autistic or not, weird or not. Unless it does damage to someone else (and we could spend hours talking about what actually does damage to people and what we THINK does damage to people), there really is no point for them to not behave like that, is there? All I know is that if I ever found the strength to present more autistic, knowing my environment and the people that surround me now, I would probably get a bit more understood and respected and hopefully I wouldn't end up with a headache and meltdown-y mood every night. So I wish I find the strength to do it. Like, pronto. In this lifetime. That's all. Aspie out.