In January 2023 I received the official diagnosis of autism. The stresses that led to the referral, assessment, evaluation and diagnosis (a ten month journey in the Dutch health care system that involved nearly a dozen experts on autism) were because of a family based trauma that was making me physically ill. During this time when I was feeling quite poorly and at the doctor’s office, I also mentioned I had a suspicion that I might be autistic and laid that card on the table. (Disclaimer, autism is not a mental illness and, other than a period of depression, I have never been diagnosed as being mentally ill nor have I ever in my life been referred for evaluation in conjunction to a dibilitating mental illness. And I would like to add that mental illness is nothing to be ashamed of and/or exploited.)
*
The definite silver lining during this horrendous time was and is actually the autism diagnosis because it gave me the opportunity to access professional mental health care that supports neurodivergent people. And unlike the general cognitive therapy I myself organized in 2015 to address social issues, which was absolutely not a success, this time I felt actually supported and understood. As a bonus, my family doctor said to me, “Persephone, we are going to handle your health care needs differently now.” What a relief, dealing with a basic doctor’s appointment used to cause me undue stress. I suppose the bottom line is me just being me and trying to be the best person I can be. And stop attempting to conform to the expectations of people who are neurotypical because, news flash, that never worked.
“Italian.”
I was surprised. No one had ever asked me to cook Italian food for them.
For thirteen years, before my divorce, I lived in Gouda. During that period I happily made quite a few friends and remain in contact with people. But for professional and private reasons I became closer to one family with whom I still regularly meet up to share stories and home cooked meals.
I racked my brain. Italian food. What did I have in my repertoire that would be enjoyable or special? My thoughts wandered off to the time I visited my father’s translator in Bologna. I was living in Paris and needed to escape my apartment because of tensions with an unpredictable roommate.
Wearing my roommate’s trench coat, and fresh off the train one February afternoon in the early 1990’s, I made my way to the translator’s apartment in the heart of the city. A jovial person, he made me feel welcome and cooked me dinner. He was known for his love of food and drink. With great joy and affection for the process, he carefully explained his method of cooking chicken breasts in aluminum foil.
*
It had been quite some years since I had made that dish. And I’ve come to realize that Franco was rather exasperated with me as a guest. “You’re here!’ he exclaimed one evening. I didn’t stay long at his apartment, maybe three days or so, and I was startled by his statement. Franco’s apartment had books and records of all genres of music piled up in corners and marble floors with patterns. It was the last item that fascinated me most. Why would I want to be anywhere else?
*
I now understand that Franco thought that I, then as a twenty-two year old, would navigate towards other people my age and find a “scene.” In truth I was wandering around Bologna in someone else’s trench coat, inspecting dusty churches and, despite the assholes tediously trailing me around the city, I was having a reasonably good time. But honestly, I liked Paris much more than Bologna.
“Franco La Polla?” the director at the Instituto Italiano in Amsterdam said to me, raising her eyebrows. This was twenty odd years later and I was performing in a half lunatic and rather lame production of Pergolesi’s La Serva Padrona. I happened to be the director, manager and soprano of the production. My colleague had arranged a performance of the piece in honor of his fiftieth anniversary at the Instituto. I was discussing the logistics of the matter in the director’s office. It turned out Franco had been a close friend to the woman and her husband.
*
The show at the Instituto Italiano was nothing short of one of the worst evenings I have ever experienced while on stage. The performance was worthy of being stuck in a novel and I consider the twelve show “tournée” of Serva Padrona as fodder for a potential sequel to Idle Opportunities.
Milling over these things, I realize I have a general tendency to accept people without being judgemental. My friends from Gouda are humans who are a little “off the beaten track” and who have opted for a wide variety of life choices with the subsequent ups and downs. I feel that this pattern is a very reasonable one because I myself have never been one to follow trends, instead, hanging back to examine the patterns in marble floors. For instance.
I never wanted to be Jane Eyre. I wanted to be Jane Eyre. Was I Jane Eyre? Couldn’t be possible, could it? Writing this post, I immediately contradict myself as I try to remember what I felt when I was a young teenager and reading the Brontë sisters. The passion of Wuthering Heights confused me and the poetical prose intrigued me. But I found the old fashioned social expectations, careful structure and convincing representations of bravery present in Charlotte and Anne’s novels quite reassuring.
*
“Looking back, can anyone here tell me with which female character from a book they identified?” The presenter asked the question to a fully packed hall. I was attending a literary evening about the representation of women in fiction at De Balie in Amsterdam. We had just listened to a young novelist read from her latest book. The author’s protagonist was a modern woman making modern choices and freely expressing herself and her desires. Was the protagonist a projection of the author? Was the world her oyster?
*
Upon the presenter’s question the room fell still. The audience was ninety percent female. The silence continued until a hand stuck up above the heads at the back.
The presenter tilted the microphone towards the mouth of the audience member
“Jane Eyre.”
Others in the audience nodded in agreement.
*
In my skull, my autistic brain was spinning. I had recently read that the character of Jane Eyre could be considered to be “autistic” and that Jane Eyre was an “autistic novel”. Therefore my immediate thought, black and white thinking, was that this woman offering the information must be autistic. But then, were all the other women agreeing with her also on the spectrum?
Very unlikely and proof that neurotypical and neuroatypical people relating to similar situations was more than plausible.
“Why?” the presenter prompted the woman.
“Because she made a way for herself,” the woman replied.
*
I sat there thinking, “How extraordinary.” The woman who offered this option had undoubtedly benefited from contraceptive options, higher education and so many more advantages than Jane Eyre. Yet despite the restrictions of her era and sex, Jane Eyre herself had landed securely on a patch of land that ultimately provided her autonomy. She was married to a blind man and in charge of her destiny. The end. Was it the happy sacrifice of the “unfortunate” that spoke to this audience member?
*
Casting an eye over the opening chapter of Jane Eyre, I inhaled the familiar smell of Charlotte Brontë. There are certain books that I read as a teenager that retain a flavor, a taste, an odor. I read Jane’s retreat behind the curtain to read, the cruelty of the aunt, and Jane’s battered and destructive reaction to free herself, like a fox chewing off its own foot to escape a trap.
I stopped reading because I didn’t want to read any further. “Some things may bring back the trauma,” I was recently warned.
*
Shame, it’s the shame of it all, I thought after the first meeting of an eight week course tailored to assist children of parents afflicted with psychological problems. The course is offered as an offshoot by the governmental health care system that specializes in the treatment and care of people needing considerable mental health support. I think it’s safe to say that after the six weeks in which I spoke with family and friends in the states last year, I can assert that the bubble that I was instructed as a child to protect and defend has burst. Something akin to the concept of the letter from “Uncle Eyre” finally reaching its destination, validation and testimony.
Sitting in a chair in a quiet room, I took in the news. The room had high ceilings and big windows. There wasn’t a screen or a buzz or any electronic distraction. A plant stood in the corner.
“You have the option,” I heard her say after announcing the diagnosis, “to join a group to learn about managing as an autistic person.”
I said yes. Immediately yes. It’s ingrained in me. I am, afterall, an American. Free health care? It’s a no brainer.
*
Sitting in chairs in a large room, we faced the experts who were going to teach us about autism. We were seven autistic people and the experts were not autistic people. It was a surreal moment. As more women are being diagnosed, my group consisted of five women and two men.
The room had high ceilings and big windows. It was a space in an old warehouse in Haarlem. There was a screen set up for a slideshow. Whenever the equipment malfunctioned, the experts immediately apologized for the noise and tried not to overly fuss. Our reactions: wincing, glaring, shutting out the situation and/or no reaction whatsoever.
The two experts didn’t mind when the room fell routinely into complete silence. We were not compelled to answer or respond to their prompts. The goal of the class was to teach us how to not hit sensory overload. So hey, no pressure. At the time and in my state I was not functioning that well. I wasn’t alone. We were all struggling.
*
I had survived so long because somewhere in my mid twenties I realized I was probably going to dive into an abyss if I didn’t take care of myself. I developed a four point plan: eat regular meals, exercise daily, entertain myself with off bits of mental chewing gum and sleep between 6 and 8 hours a night. Sometimes I would give myself permission to sleep longer but I would be hypervigilant about avoiding experiencing what I could only describe as a comatose-like feeling if I overslept and which would take weeks to rectify.
*
After finishing two years of the post diagnosis trajectory, I was offered a place in a group for autistic women that met once a month. I was invited to the intake interview and found myself in a modern building with overly bright lights.
The group leader ushered me into a room and asked if I was okay with the lights.
“I wouldn’t want to work here all day,” I said, sitting under the harsh office lighting.
A group of people entered the next room over. The spaces were not soundproof.
“Maybe we should move,” the group leader said and led me down the hall.
We sat down in another office space under the same harsh office lighting. A clock ticked loudly on the wall.
I thought with some amusement to myself that the building I was sitting in was completely unsuitable for the autistic people who were being supported by the Foundation.
A love poem. The call was for a love poem. This was more than ten years ago and I don’t write love poems or, more specifically, poems about lovers. I remember I pulled out a few lines I had written in conjunction with a specific plumbing tool, the name to which had engendered some fascination in me. This was back when I was living in my little row house in a small town in the Netherlands and there were more than enough recurring issues concerning the plumbing to enhance my vocabulary. I thought I could tweak those few lines into some type of fathomable love poem and successfully submit it. I was sadly mistaken.
*
This is an example of my confusion about romantic feelings. In my experience, it’s a struggle to find them and apply them to a scenario in real life with an intention towards a consequence that matches with the expectations of another person. What did I finally say to the realtor? “I want to buy an office.”
“An office?”
“Yes.”
“But you are going to live there?”
“Yes.”
*
And with that conversation I escaped the fatigue of the “little woman what you need is to buy yourself a one bedroom apartment in a nice quiet neighborhood with trendy bars where you can pick up a forty something year old man who is in the initial stages of midlife crisis and take him back home and then cook a chicken Au Provence for him in the Ikea oven in a pan that won’t fit into the sink so you can’t wash it properly but you will only try the chicken recipe out once and then give up but one hundred percent no worries about not being given more opportunities to appreciate wildly varying degrees of distracting non-functionality that can surely be yours and surely written into the mortgage, did you want to get an assessment” proposals which were not in line with my version of life, “a small apartment with a big sink in the city center which will offer an easy retreat as well as ideal socialization options for outings to the theater, movies and concerts either alone or with friends.”
*
“But where are you going to put the bed?”
“What bed?”
“Where will you sleep?”
“I don’t like beds.”
Eventually got what I wanted. And I still have my folding tatami mat.
*
But back to the poem submission. At the time I had no idea I was autistic and I ended up writing a novella about the row house. More specifically about leaving the little row house and heading for a divorce. It was translated and published in Germany. I thought the novella might become a minor cult novella. How wrong I was. And looking at it now, I can see the autism in it leaping out of the pages and dancing around the room.
*
But, again, back to the poem submission. There was a call for creative autistic people to submit poems, stories, artwork. Here was my chance to be witnessed. I submitted a number of poems.
I am proud to say that my poem “I like your shoes and I want to eat you” has been accepted for the publication of Unique Minds, An Anthology of Art, Poems and Stories by Autistic Creatives. The publication is edited by Rosemarie Cawkwell (of Faraway, Unique Minds in the UK) and is funded by the Amazon Literary Partnership.
“When will this stop?” I was exasperated.
My therapist at the Hersencentrum in Amsterdam looked at me.
“You said you did not want medication. Do you want to talk about medication?”
*
The exasperation on my part was due to my growing acceptance and understanding of the difficulties that I had experienced just trying to navigate my own life in the past, trailing the footsteps of a “normal” person and hopefully checking off tasks as I supposedly met my own and society’s expectations. I didn’t do too badly but things could get better.
*
I decided to take up the challenge to access better suited job openings. Everytime I turned around a recruiter was trying to sell me a job as an office manager in the heart of an open concept space type of office filled with over a hundred people. “You’ll be the soul of the company!” I felt I had landed in a living nightmare. Where to start on this issue?
When I signed up for the salary administration course my therapist said, “You’re being very brave.” She had heard me describe how I managed to get through elementary education and high school to end up with a handful of diplomas and then finally a BA in Music. For my part I didn’t think that I was being brave, I was trying to survive.
*
Overriding any ducking and dodging inclinations, I completed the salary administration course. It cost me a lot of sweat and many tears. I never in my life imagined that I would be crawling through a five hundred page Payroll Tax Book. In Dutch let alone in English. I never took a Dutch language course in my life either. Over the last thirty years I had slowly picked Dutch up and I speak like an immigrant. I am reasonably competent, consistently making mistakes and have a funny little accent.
With the four month administration course nearly completed, I sat across from my therapist and considered her question. I did not want medication. I had grown up witnessing my father’s addiction to drugs. I did not want medication. Did I say that already? I did not want medication and I was fifty-seven years old. A vision flashed through my mind: I was living in an old folk’s home and the staff was asking “What’s wrong with that lady?” and then they doped me up with whatever was left over on the cart.
*
I reassessed the matter. It would be better to figure out now what medication I reacted well to and have that officially noted in my medical file. I agreed to a discussion. I badgered everyone I knew about the medication that was proposed to me on a trial period and was told that the pills were well documented. In my case, the medication proved highly efficient.
“We find people sometimes opt to suspend medication on the weekend or during a vacation,” the woman who wrote me the prescription said. “It’s not a problem.”
*
During the trip to the states this past summer I visited the archives in Bellingham and read my father’s manuscript (the only one that is in the archives) in which he describes his life when he was running around with the LSD crowd and dealing LSD. By the end of the nineteen sixties, to my knowledge, my father avoided LSD entirely and was habitually using other substances.
Remembering my father’s physical unease, his shifting and discomfort (let it be said that for most of his life he didn’t live a terribly healthy lifestyle), I can be led to believe that he might have been somewhere on the spectrum. It is not unrealistic to say that ADHD and autism are present on both sides of my family.
*
“Just what is it that am I taking? Is there any connection with LSD?” I asked myself and punched in a google search. The medication that I am taking, of course, isn’t LSD at all but I quickly came across this item, dated 2024.
“Recent clinical and preclinical research demonstrates that psychedelics may hold therapeutic value in the treatment of some of ASD’s core features.”
And there were other recent articles on the subject.
“Hmmm,” I thought, “while back in the day this meant you could end up living in a junkie house in Seattle with people who were descending into madness and depravity.
I was cleaning up dried out cat puke under the piano. I hadn’t noticed it before because I rarely go to the piano. Standing in front of the keyboard, I felt a vague inclination to lift the cover and sit down. This is the first time in three years, or since the beginning of the crisis that led to autism diagnosis, that I have actually almost wanted to play the piano.
For about twenty-five years of my life, I stood on stage and performed as a classical singer. But when I was young and had started working in opera companies, I quickly understood that something was wrong. I would crawl home after rehearsals and performances shaking, never comprehending how my colleagues carried on afterwards, going out to dinner or drinks. I was exhausted by the extra socializing that working in an opera production required. I continually heard the music for whatever production I was in repeating in my brain twenty-four hours a day, meaning while I slept, and this added to my stress. I quickly moved away from participating in large productions and focused on teaching and small concerts.
*
Fame. What did I hear about fame? Fame is a manner to normalize alternate behaviour. It was dangled like a carrot in front of my nose when I was growing up in a dysfunctional family. My father was supposed to become a famous writer and I was supposed to become a famous opera singer. Except that being the center of attention of a group was and is overwhelming to me.
Yet I could do it on stage at a distance from the audience. For years on years I was trained to stand on a podium and represent some concept or character. But then I am not me. What’s actually more challenging is being the center of attention in daily life. In these cases I tend to divert the subject, focus on who is standing in front of me, gently prodding that person to talk.
*
Busy writing Routine Apparitions chapters, I ordered an obscure book of poetry written by one of my father’s friends. I recall the poet well, mainly emerging from the garage where he and my father had been getting stoned. A few years ago I stumbled across the works of an illustrator who had been employed at the restaurant where the poet worked as the manager. She wrote two books about her years there as a waitress. In the second book, the teenage daughter of the poet-manager runs away from home and is having a wild time doing teenage things. The name of the fictional daughter is Persephone. I was not very happy at this discovery and I remembered that Isabel (the actual name of the poet-manager’s daughter) had run away and been into all sorts of typical teenage “pushing the limits” behaviour. As for myself as a teenager, I was at home with the cat and practicing the piano…..getting ready to become famous.
It’s one of my favorite buildings in Amsterdam and it happens to be called a palace. But the building was not designed to be a palace. Magnificent, Amsterdam’s City Hall was the first Republic building of its sort in Europe. Napoleon, after invading the country, transformed the city hall into a palace and, to this day, the building is retained as a royal residence.
On the occasion of the fiftieth birthday of the King of the Netherlands, the palace – once the celebrated invitees to the state dinner in honor of King Willem-Alexander had departed – was opened to the public. To gain entry all I had to do was sign up online for a timed spot, free of charge. That particular April night I walked into Het Paleis just before the clock struck the midnight hour. I lived one street over at the time so it was an easy stroll to the neighbour’s reception hall, post-soiree and pre-clean up, to gaze at the crumbs laying on the royal table.
As it turns out His Majesty’s musicians were also still hanging around a podium, jacked up on adrenaline and crooning a set of limpet golden oldies into microphones. No trace of the hides or hounds of the guests. Still, it was a very unusual opportunity to be in the building in the dead of night. The walls radiated a very different atmosphere from the normal visiting hours.
*
Not long ago a friend of mine gave me a certificate to cultural activities, such as a guided tour. I decided to try out the tour at the palace. I slipped out of my office during the day on a break and biked over to the Dam. Unfortunately, I didn’t learn much new and I was fairly bored by the guide’s regurgitation of Greek myths, as depicted in the masonry which is, admittedly, quite spectacular.
What I realized, as I walked around, is that I didn’t want to see freshly upholstered Empire furniture and beds laden with satin bedspreads. It has to be said that, for the most part, the paintings are mediocre. What I wanted to see in the rooms were piles of papers and registers on tables and clerks and dogs peeing in the corners. In short, I kept looking for the original uses of the rooms back when they were offices. Where had 17th century bureaucracy gone?
*
As I walked across the street to where I had parked my bike, I had a flashback of the psychologist at the Hersencentrum who had listened to me describe my diligence and habit of reading through books because I continually believed that I would “finally” get the message and understand what other people found valuable as experiences. Or, rephrased, crack my “executive function” issues. My therapist held up the book I brought in, a tale of various types of social experimentation, and tossed it on the floor. “You don’t have to read it if you don’t relate to it,” was the message. Stop trying to catalogue what everyone else finds interesting. A novel idea.