Everyone knows about autism these days. It has become a term that we hear regularly in different situations and I know more people than ever who have been diagnosed with a certain type of autism. Awareness has improved, parents know more about it, books are written, movie characters have been analyzed and diagnosed and so on. I have seen the improvements, spoken to people, listened, read, and yes; awareness has been raised to a certain degree. Way better than when I grew up and nobody even mentioned the term autism to me, even though the signs were as obvious as they could possibly be. But what happens after you have been diagnosed, when you have accepted the diagnosis as a part of you and the days start to fly by? When you have connected your issues to the diagnosis instead of hammering yourself like you used to do for years? When you realize how mistreated you have been from the very start at school? When you realize that you will most likely never fit in and the following depression strikes hard? Well, there is not a simple way to answer these questions. People have different opinions and experiences, I certainly have mine, and that is why I want to express them through this letter. I am not looking to raise any more awareness or to teach people what autism is, I am looking to achieve something else. Some parts of this letter may sound harsh and there will be plenty of “I” and some of you might think that I am bitter or sour, but this is my reality (and many others’ realities) so this is how it will have to be if we want to answer the questions above properly. Let us try!
First of all, I want to make one thing very clear. I have been told from a young age that my mental conditions could be viewed as a “superpower.” My parents and closest relatives never claimed it, but it has been written in magazines, in different Facebook groups, teachers have said it, and so on. When it comes to my autism, and to many others I have spoken to, that is as untrue as it could possibly get. It is not only a lie, I even prefer to categorize it as complete bullshit. Yes, I do have abilities that most people do not have. I ploughed through five courses of Spanish in three years more or less without studying. I was regarded as a native speaker by my English teacher in ninth grade, along with some Americans who had been speaking the language since they were born. I wrote an article in ninth grade that would have given me top marks even if a twelfth grade IB teacher in Geneva had been reading it. I memorized fifteen or twenty new words I had never seen before for an English vocabulary quiz in seven minutes and aced it. I walked into advanced French and aced the entire course after just one year of beginner’s French, even though the others had been doing it for years and years. Would any of this have been possible without my autism? Personally, I do not think so. My language abilities are razor sharp, no matter if we are talking about writing, listening, speaking or reading. The only thing that prevents me from speaking Spanish, French, Chinese or whatever fluently is my lack of interest. Had my interest in languages been equal to my ability to learn them, I would be speaking several foreign languages by now easily. I do realize that this does sound arrogant and, believe me, I would love not to put it this way, but it is the truth. However, school never managed to inspire me enough to put some effort into it, apart from ninth grade English and French. The common denominator between those two courses is that none of them took place in Sweden, which in itself is an issue for the schools I attended on home soil. Anyway, that is a different debate that I might be getting back to someday. For now, let us concentrate on autism.
But this does not make sense, right? I strongly dismissed the idea of my autism being a superpower, yet I still tell short stories about how good I am at languages? How does that work? The thing is, though, that it does make perfect sense when you think about it. I do have an ability to learn languages easily, no doubt. But, of course, that must be balanced out in life somehow. And, mark my words, that specific talent has been more than balanced out from the very start. The struggles I have had, the feeling of not fitting in, being invisible, always wanting to do daily tasks differently than others, having to explain why I do things a certain way every day because it looks odd, being forced to do things against my own nature and never ever being given any credit for any of it, outweighs my language abilities by far. I am a different spirit than most of the people I have met, yet I still have been forced to do everything their way. If you try to make an apple pie from a pear, it will not taste like an apple pie normally would, right? If you put a zebra in a group of hippos, it will seem weird. However, does that make it less valuable as a zebra? Definitely not, but he sure as shit will live his life thinking he is useless because he cannot open his mouth like his hippo friends. I am that zebra, living among hippos, feeling awkward and frustrated because nothing is ever being done how I want it, but yeah, I did learn French easily at school. Superpower? It could have been, but not in this modern world. And it is not like one is just having a bad few months and things “will be better soon.” I am still waiting for that day to come when it gets “better soon,” and it has been 23 years. So seriously, cut the crap.
Yes, I do have other abilities than just the language part. I am good at seeing patterns, which could have benefitted my mathematical studies if the school system had not choked me, and I am a good problem solver. I can often foresee what people will do and say which is a great tool when I find myself in some sort of argument and I am probably the best liar you will ever meet. I do not want to be a good liar; it is nothing I am proud of and I only lie when it is the only possible thing I can do to get through a certain situation. I am not lying to people in general for fun, usually I am not lying at all. But as an autistic boy who desperately wanted to fit in back in the day, lying was my only choice more often than not. Many teachers in Sweden did not take my issues seriously because I appeared to be normal. I did not act weird in class, I was not involved in too many conflicts and I was always polite. Guess what, it all was nothing but a big lie. From kindergarten and all the way up, all I wanted was to get out of there. The forests and their inhabitants seemed so far away, they wanted me to come home, but I was stuck in a classroom in town with people I seldom had anything in common with all day (except for a very few kids in Sweden and one amazing boy in Estonia). I wanted to tell many of the Swedish teachers exactly how useless they were which led to me wasting energy on just keeping my mouth shut. My brother and my parents have seen my meltdowns at home, but nobody else have because I am the best liar out there. Autistic meltdowns tend not to be the prettiest of sights, and if you add the old-fashioned belief that boys do not cry on top of it, I had enough reasons to hold it back. I have never been violent and I never will be, and I do not for one second agree with the do-not-cry nonsense, but I simply had to protect the little positive reputation I had left. These things might be hard for a non-autistic person to comprehend, which is a huge problem and I will be explaining why in just a minute.
I have been seeing doctors, therapists, psychiatrists, and all kinds of professional people since I was nine years old. I have been in the game for a long time to say the least. I received my autistic diagnosis at the very ripe age of 17, which was at least a decade too late, and I have met various proper experts time and time again ever since. People who have studied for five-ten years and know every theoretical thing there is to know about autism. They have read thousands of books, met thousands of people, listened to thousands of lectures, watched thousands of documentaries and written a thousand essays on the subject. They have spent their adulthood trying to understand, help and support people who struggle. I admire it obviously and I do appreciate the effort that some people put into it. But, at the end of the day, I still feel that most of them do not understand. They know that you get exhausted from too much social interaction, they understand that you might or might not be dependent on your routines to function and they are aware of the fact that you do not like noisy surroundings or flashing lights, or at least not too much of it. These things are basic, even though they remain very vital, and therefore I have no intention to devalue the importance of that knowledge. But my experience is, and this is my experience only, that apart from these basics, I struggle a lot to get my points across no matter how many books the person in question has read. When I try to explain what it is like to feel like a UFO at school or why I hate the smell of iron, just a few people understand. Other autists can relate to a bigger extent, I know that for a fact, but since the doctors and therapists (the ones I have met, I cannot speak for others) are not autists, they quite frankly do not have a clue.
And why are the therapists I have met not autists? I have a theory and it is only my opinion, there is no science behind it. I could take myself as an example. Once a very promising student who received top marks for most of the work he did at school, teachers praising him for his hard work, an intelligent boy who mastered even the most difficult tasks at school and in life. A boy who was given an award for his academic achievements by President Obama´s ambassador in a foreign European country ahead of a number of students who were perfect in any way. A boy who told his best friend that he would be living on Wall Street in twenty years time. A boy who did not know that his biggest strengths also would end up being his downfall. When he was eight years old, he became forced to waste a great amount of his energy on stupid nonsense that the others never even had to think about. How to behave on the school bus, how to wear his hat, what not to say in class and how not to express your opinions because they were different and you would end up being lonely. When he was fifteen, still a little kid, he was forced to fight a regime that had taken over the entire school on his own since the teachers turned their backs on it, tensions in class were huge (see my earlier letter where I explain what happened, link below) and his average focus spent on the actual schoolwork ended up being lower than the coldest of winter temperatures. He told his parents in ninth grade that he was spending 30% of his energy on schoolwork and 70% of his energy on not being psychologically eaten by the regime, yet he still managed to claim numerous awards including the most prestigious of them all, the Obama thing, and finishing ninth grade with a mark average of 6.4 out of 7, art being the subject that lowered the average from 6.5+. That should tell you something about the potential this boy had.
These constant strains at a young age obviously took their toll. I burned out at 19 and I finally realized that universities are not for me, I was traumatized so badly during my school years that I will most likely never be able to get back into it. Nor do I want to, and I can easily name a dozen solid reasons for that. I do have the brains, the ability and the experience from studies at a reasonably high level, but there is just no way I am exposing myself for that kind of torture again. That is the reason to why I will never be able to reach my true potential, I just cannot go back to school after what I went through. I will never be able to call myself a specific title and therefore I will never be able to help younger autists or their parents properly if the bureaucracy remains like it is today. This is what people do not understand, since they all keep telling me how different university studies are from high school or a gymnasium, as if I was clueless. My reasons to why I am not going back are just as difficult to explain as why I hate the smell of iron. “I burned out at 19 and am too tired” or “I do not like school because of this and that” are not good enough explanations. Nowadays I know that I am not obliged to explain anything, but when I was younger, I was always getting frustrated that nobody ever understood or agreed with what I was saying, simply because I am different. But the simplest reason to why I am not coming back would be something like: “they had their chance, consciously decided not to take it, hence they do not deserve me today.”
Without university education you will not be able to get into a position where you can make a difference in the autism clinics, which makes sense to a certain degree. Doctors (they are vital, I am not saying anything else) prescribe medications and similar things like that and psychologists (also very important) work their methods and strategies behind closed doors. There is no way you should be doing any of that if you are not properly educated, that is common sense. Unfortunately, though, the bureaucracy in Sweden appears to be so old-fashioned and stubborn that it will not look another way when they are hiring their staff and making plans. If they did, just once, they might come to realize how much knowledge and experience there is available in front of their very eyes. Me, for example. I am not a psychologist (even though I should have been) nor a therapist, I am nothing of the sort. But, unlike the highly educated people I have met, I have plenty of practical experience of what autism could be like. And when I look back and analyze my own journey through the different psychiatric health clinics, I am sure of the fact that there is one big thing missing; someone who can relate. All autists are different to each other, but many of us have had the UFO-feeling at least once. That could be enough. If I, at the age of 17, had gotten to meet an autist in their mid-twenties or thirties, someone who could relate to what I was trying to say, I am sure things would have been different. Someone who was hired for that very reason, to relate, and someone who could help me get my point across to the doctors and psychologists. Someone who had enough experience and practical knowledge to help the professionals understand. Theoretical and practical knowledge working together, side by side, for a good cause. That would have helped me more than the psychologist who had read a thousand books, despite the obvious gap in theoretical knowledge.
I am not saying that I should be given a doctor’s wages or a doctor’s responsibilities, no way, I am not interested in any of that. My intention is to help parents and first and foremost the young autistic kids suffering through hell at school. The shortcuts I learned, the little tips on how to save energy, how to make teachers aware of a certain issue, how to help kindergarten staff to understand a young kid, putting your foot down and how to avoid difficult situations without looking odd. Relate to depressed kids who self-harm (some people find it difficult emotionally, I do not), kids who cannot sleep because they do not want morning to come, how to embrace a special interest instead of neglecting and choking it like school does, how to support kids who stutter, I know that too. Someone who believes you if the teachers do not. I have done all of it a thousand times instead of just reading or hearing it a thousand times. How to stand up for yourself no matter what and most importantly, how to be yourself.
Unless something changes, my practical knowledge and experience will never mean a thing. They will most likely follow me to my grave as long as the theoretical knowledge is more valued. That is not fair to me, not to other autists who share my experiences and it is certainly not fair to the upcoming generations of autistic kids and their parents. They deserve someone who can relate. I never had one.
“Not fitting in in a world that is sick to the core is a sign of good health. We are not meant to live with flashing lights, music and cars and all this noise. Being sensitive to that makes you a more natural individual.”
–Varg Vikernes
Life of Ingela 