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.