Sitting in a chair in a 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. The mood was not modern, as in a modern life vibe. 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, engage in mental chewing gum at some point in a day 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. 

Of course, once I educated myself that my four point plan hadn’t been a bad plan and I just needed to focus on eliminating sensory overload, I had to educate my family and friends. Some friends were right on board, some friends wanted the “old Persephone” to show up. 

*

The masking was exhausting. And that’s a whole other topic.

*

Having finished two years of the post diagnosis trajectory, I was recently offered a place in a group for autistic women that meets once a month. It’s in a modern building and I was invited to interview for the spot that had opened up.  Again, free health care? Totally, I’m in.

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 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 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. 

*

And so my group meets up to sit in the dark and talk about a theme that had been decided on months previously and is printed on the schedule and a reminder is sent to us every month. Thus no surprise is sprung upon us.  Still, I think the group would function better in a different space, one that doesn’t seem like a dentist’s office. But that’s just my take on the situation.