I have suspected it for a long time. A few months ago, I have been diagnosed with an Autism Spectrum Disease.
When I talked to my mom about it years ago, she laughed at the thought, because she had the old narrative in mind of what autism looks like: children being secluded to their own world, throwing tantrums at everything unexpected or intense, usually not able to express themselves in more than a few words, stimming to calm themselves down.
And then there is Aspergers. It was considered a mild form of autism that manifested in awkward social behaviour and inability to read and react to social cues.
I certainly had neither of these expressions. My dad on the other hand, looking back with what I know now, was a rather typical case of an Aspi, and autism is believed to be heritable.
Science is believed to progress from one death to the other, and the education about autism my mom had in her training as a social worker was imprinted by the old generation of psychologists and psychiatrists.
So what is different today?
Autism is believed to be a spectrum, from very mild to severe. I would rather call it a multidimensional field, as there are quite a few different characteristics that can independently be mild or severe, thus placing each autistic person on a different coordinate within that hypercube.
So I take issue with the term spectrum.
I am not happy with the term autism either. It comes from the Greek and means “to be very self-referential”. It lends itself to a comparison with egoism and narcissism easily, while both would be wrong.
And how about disease? I would agree with the base meaning of disease as something that is not easy and therefore causes dis-ease, but in the clinical sense, I hate the term because it has people view autism as a diagnosis and a disability.
But what is autism then?
It is a different way to experience the world.
What I am going to speak of now is my own experience which might shed one light of many on autism, show one expression of many.
When I was a child, I had no friends in my age group. The first church experience I had was with seven, and I really liked it because I basically lead the house church. Others did the fluff of worship music and fellowship, but I did most the teaching about the bible.
This is one of my coping mechanisms: being part of a group is challenging for me, but when I lead it, I can set the topic and the atmosphere. If I cannot lead a group, I observe it.
Yes, as you can see from these examples, there are some shortcomings that make it hard in social situations. I have difficulties reading cues from body language or facial expressions. As for facial expressions, I am not totally unaware of them, but often misinterpret them in real life situations. I score totally fine in clinical tests as I am primed to pay attention. Show me an image of a person and ask me whether this person is angry or sad, and I will pick up on the right emotion most of the times, even more than most.
But put me in a church gathering to preach and I will miss all cues. I usually say that I will see that you are tired and had enough when your head hits the table. And since there are no tables in traditional church settings, I might never stop.
I love the unknown, but mostly only in my head and my thoughts. I go places no man has gone before, as long as they are conceptual. I am overwhelmed by new situations in real life. I have no problem being spontaneous and do not cling to a disciplined routine, and even visiting physical places I have never been to does not bother me. It is new situations, especially those that involve dopamine: daring to walk through a forrest at night, going on a rollercoaster, swimming in deep water where I cannot touch ground, meeting people I do not know with no clear topic or purpose for the meeting.
I have a hard time understanding metaphors. I have been called Drax after the figure in The Guardians of the Galaxy. When somebody said that something went over his head, he answered: “Nothing goes over my head. I am too fast and will catch it.” Actually, I do not have difficulties with understanding the metaphors, I usually do, but the first thought I have will always be towards the literal interpretation because it is funny, though provoking and interrupting the usual.
This is my kind of humor: to disrupt thought by taking things literally or choosing the other meaning when two words sound alike. To give you an idea, it’s often like dad jokes.
I also conceptually see more than others. This might be counterintuitive to the normal understanding of autism. But I have to bring my thoughts to the table at least partially, and I have to try to get people to understand. It is like a compulsion. I know and have given in to the idea that most will not get all that I would have to contribute, so I do not even try to say it all, but I cannot understand that people often do not want to hear any further thoughts.
I function like a sponge. I want to know everything the other knows, in digestible piece-meals of hour long talks, lasting way into the night, and I can miss many meals in these times.
When somebody asks me to explain something, I feel the duty to give them multiple perspectives and at least an overview of the possible interpretations I know, and add them I am sure that there are many more. This has not gone over well in my church environment, as people just want to know “how it is”.
I would say that I have black and white rigidity of thought that is ascribed to autism on a meta level. I have not done justice to a topic before I have not viewed it from multiple sides and used block logic instead of linear causal logic. I see myself as an aperspectival thinker in the sense of Jean Gebser.
In the sensory realm, I have overloads. Those are more or less strong depending on my overall state of wellbeing. I am sensitive to light, and since they have been restored to me, to smell and taste. I love my bedroom that also serves as an office. It is rather dark. I had times when I had to go minimalistic on furniture to rest my senses, especially right after the restoration of smell and taste.
I seem to be detail oriented because I build a rather holistic network of the world and my interpretation of it in my head and then often just communicate the inconsistencies or holes in my model to further develop it, and those can be rather detail oriented. Without context, people might think that I am only interested in these details and do not see the big picture, and frankly, I have somewhat given up to try to show them that it’s quite the opposite.
I also like to tell the truth straight forward, knowing full well that truth is subjective and expecting others to give their view or ask further questions. I know that I provoke with that, but I am tired of putting fluff around things. I know of the importance of meeting people where they are, but I long for reciprocity in this aspect. Why can’t I just say things from the place that I am at. “What we call communities are not communities at all, and what we call dialog usually is a superficial rip-off and poor copy of what dialog really is.” Those are sentences I would love to utter as a communication starter. There is nothing emotional about them, they are just hypotheses to talk about. I do not understand the emotionality they provoke.
Over the years, I have learned to mask most of this. I have learned to withdraw when I am overwhelmed. I have taught myself a ton of personality assessments to better understand people, and my coachees think that I can read them while I am just mirroring to them some aspects of their personality from the books. But since I build this holistic framework, it is more sophisticated than just uttering stereotypes. I hold back with my humor, and I have taught myself some ability for smalltalk, while I still doubt its necessity. For me, smalltalk prevents real community instead of enabling it because we usually never go deeper.
I have been called a good listener because I can pretend to be interested while withdrawing into my paracosm inside my head.
I have a hundred dialogs going on in my head at the same time that I am conscious of. Each of those is working on another part of my ontology of the world, de- and reconstructing it, adding details or new connections, or just walking through it breadth or depth first to answer questions I have posed myself or have picked up from the environment. Adding real time conversations to this plethora of communication often feels as too much.
I definitively see autism as my superpower, along with high intellectual and existential intelligence. But as with most super heroes, people are afraid of us, feel inferior, and see us as a threat they have to stereotypically put in the box of neural conditions.
That brings us back to the term autism.
Autism to me just is on the fringes of the ways we interpret the world. As with general intellectual intelligence, where most people reside between 85 and 115 on the IQ scale, those fringes are deemed outside the norm. Which they are, because the norm is set by the majority. There might be other fringe cases like empaths or highly sensitive people.
But I would not like to call autism an abnormal perception of the world because we have assigned negative value to the word abnormal. At the moment I tend to the term neuro-atypical in the big world of neuro-diversity, which certainly includes all those ways of thinking and understanding the world that we would deem normal and I would call bland, if I were to speak my mind.