Gerrit Achterberg wrote a poem that begins like this:
I’m made of so much glass
that every loud voice
is a stone and a crack.
Most people are like houses. Made of stone, with a window here and there. People like me are like greenhouses. All around us single glass. We perceive everything, including how others perceive us. We adjust our behavior accordingly, until it matches.
Our behavior is sometimes called learned, as if we were robots. The first is true, the second is not. We are not made of metal and wiring and an electric motor, but of bones, blood vessels and a heart.
I write “we” as if people with autism spectrum disorder are a uniform group, which they are not. In the past, people with an information processing disorder similar to mine (‘information processing disorder’ is a definition of autism) were divided into three groups: people with Asperger’s, people with classic autism, and then another group ‘others’. They ended up in the PDD-NOS bin, where the last three letters stand for: ‘not otherwise specified’.
I was the father of a son with autism, had a mother with autism and her father had it too, although the word did not exist when he was alive
It could be even more vague, so in 2014 when compiling the new handbook of psychiatry (the ‘DSM-5’) the three-way division was abandoned and everyone is now on (or ‘on’) the autism spectrum. That was too vague, so new classifications are made. For example, you have mentally disabled people with autism (about 30 percent), but also people with an average intelligence and gifted people. You can also classify them differently, for example: people with autism who need a little support, quite a bit of support or a lot of support.
Social psychiatrist Lorna Wing (1928-2014) distinguished: the aloof (‘aloof’), the passive, the active-but-bizarre (‘active-but-odd’) and the stilted (‘over-formal’).
Are you already dizzy? I do. All the more so because I think all classifications are fine in themselves, only when I ask which of the four categories of Lorna Wing I belong to, I always get the answer: “You have a bit of all four.” So you have nothing to do with it.
No filter
Writing “we” when I talk about people with autism (avoiding the word “autist” because it sounds cold, like “orthodontist”) feels uncomfortable. I am not a psychiatrist or psychologist and have no advice or golden tips for people who, like me, have a diagnosis or are considering getting tested. There are many things I don’t know at all, for example why I had myself tested for autism.
I didn’t have the firm conviction beforehand that I wanted to know whether I had ‘it’ or not. What I did know was that life actually always overwhelmed me. People, impressions, there was no filter: everything came in and ‘everything’ is way too much. At the age of fourteen I discovered alcohol as a dampener: from the age of nineteen, when I moved into lodgings, to the age of forty-two, when I stopped drinking, I haven’t gone a day without drinking.
In the meantime I was walking down the door at psychologists, because I was struggling with psychological complaints. Schema therapy, regression therapy, EMDR, hypnosis: I got the T shirt, but it kept busy in my head and I kept not understanding the world. I was the father of a son with autism, had a mother with autism. Her father had it too, although the word didn’t exist when he was alive. But when we went to visit my grandparents, he came to greet us, after which he quickly left for his carpenter’s room. When he came to visit us, he was so afraid of missing the bus that he arrived half an hour early at the bus stop. Then the bus came earlier, but he didn’t take it.
I had myself examined to find an answer to the question why I always feel so rushed, look so skittish, always alert and on my guard. Because I wanted to keep the diagnosis path clean, I went into the tests ‘blank’. I took that literally: I saw myself as a blank slate. I did a lot of tests and was observed by a friendly and knowledgeable psychologist. Sometimes a colleague came in for a ‘second opinion’, although I hoped that they would eventually arrive at one judgement. That it is not like a boxing match between two equal fighters undecided would come true.
The outcome
On September 23, 2019, I had the ‘results interview’, where I was informed that I had ‘it’. Later, a PDF with the entire research report came via email, and it was only when it was really written in black and white that I felt fully autistic. Or well: a man with autism So.
When the psychologist asked me how I felt about the result, I truthfully said I didn’t know. Relief and sadness exchanged pennies. Relief because I knew what I had, sadness because I didn’t know before. Sadness because I didn’t know sooner so that maybe I could have gotten some guidance.
For example, when I was twelve years old, when I was put down from primary school with a VWO recommendation at a secondary school, where I didn’t know anyone, except for a few former classmates who did connect and then pretended not to know me anymore. I had no idea how the social structures worked within this new group, kept saying things that made people laugh the wrong way. After a year I had to leave that school with a mavo advice.
During the lesson I dreamed away and looked outside, where I saw a magpie sitting in the tree. And then I became that magpie, until I heard the laughter right through the wall I had built around me. The laughter at the boy who seemed unattainable until they started shaking my shoulder, as if I had been sleeping, but I wasn’t sleeping: I was off.
For example, then I would have liked to have a supervisor, but there was no one, and when I started drinking more and more, no one came to help until I recognized myself that I needed help. Now that I have a diagnosis, there is a coach paid from the Social Support Act, who is also very friendly and knowledgeable, but cannot change the world, cannot make it any less penetrating.
What was also confusing after the diagnosis was that part of my environment said that they had already taken autism into account for a long time, where the diagnosis had come like a bolt from the blue for me, because I had entered the entire process as a blank slate.
Shocked, I turned my life back like a cassette tape, began to link past events to the workings of my brain. Like that image of the boy in class looking at the magpie outside. Suddenly I understood that boy, only forty years later. I can’t retroactively protect him, he’s just sitting there, in the early 1980s, unprotected in class: a deer surrounded by wolves. Now I am older, even middle-aged, but I am no less vulnerable. I’ve only learned to be less vulnerable to come across.
#Age #Diagnosis #Autism