Five years ago, I took my son, who was then aged fourteen, to a Greek Orthodox Church, dropping him off at 11:15am and then hiding among closed Sunday shops in Reading until half an hour before the service was due to end at 1pm.
When I returned, I found him standing full attention in the church, listening intently as the priest blessed all sorts of things, but mostly the holy water because it turned out that today was the blessing of the holy water festival…or something I didn’t understand, not being Greek or Greek Orthodox, and having window-shopped a closed Monsoon, a closed Waterstones (and a closed Paperchase, Next, Whittards, and Thorntons) for the entirety of the service.
Or what I imagined was the entirety of the service. Apparently, this particular church felt a service scheduled to end at 1pm should go on for several additional hours because of the blessing of the holy water or whatever the task was. You’ll have to ask Nick why exactly as I spent most of that time reading the back of the shirt of a man in the front of me, who was wearing an orange turban and did not look like he was a Greek Orthodox, but something else that combined a number of religions including Sikhism. His t-shirt had all sorts of stuff on the back about Jesus, Sikhism, and a youtube channel I could not quite make out in the church spotlights, and he looked as displaced in society as I was.
I’ve had a feeling of unbelonging that began just prior to Nick’s diagnosis and is still going on today, and I felt this man’s presentation of himself, with his whacky shirt and inappropriate turban, was far more honest than the representation I chose to give in my oversized jumper and winter leggings. You couldn’t tell much about me, not with these pearl earrings, and clean boots. Not with this fashionable haircut. You would never guess I spend most days trying not to lose my mind, imagining my son’s future.
Everyone was very nice. They gave me a candle. There was a long procession. Once in a while an ambulance passed and we heard the siren above the choristers and prayers and chants and moments of sermon. The siren reminded there was an outside world and that, through doors provided, we might escape. But Nick didn’t want to escape. Autistic kids are supposed to have short attention spans and hate crowds and become agitated at too much stimulation. But the church was full of ornate brass thuribles with their smoking incense, crowded worshippers, gleaming saints and gargloyes and scary images, echoes and coughs and the sense of being pushed around in a throng of people. If anyone was finding the experience difficult, it was me not him.
Today, we are not going to the Greek Orthodox Church (I hope) but last night we did celebrate Ethiopian Christmas. Please remember, this wasn’t my idea either. I didn’t even know that Ethiopia had a particular day (January 7th) during which Christmas is celebrated through the festival they call Ganna. I thought the reason my son wanted to go play air hockey at the local bowling alley was because he’d finally decided to do something kids his age like to do. It felt to me that air hockey was a signal of some new milestone for him. I got excited—could it be that soon he’d decide to meet up with friends or have a drink at the pub or talk about career aspirations or get a driver’s license? Was air hockey the beginning of a new turn in which he began to engage in life newly neurotypical?
But no, air hockey was the best he could do to emulate Ethiopian Christmas. On the morning of Ganna the people dress in white, which explains why he showed up last night in his white summer trousers though it is winter. During Ganna, the people of Ethiopia play a game that is also called ganna, which involves curved sticks and a wooden ball, not unlike our hockey. That was why we had to play air hockey on January 7th, as part of another culture, not ours.
While there was no Ethiopian church available of us to attend (thank Christ) there was the fantastically colourful Global Cafe, a restaurant run by an Ethiopian chef named Tutu, and to which we arrived to eat wat, a tasty lentil stew, and injera, which is like bread but much worse. Nick loves it, loves all things Ethiopian, and I’d like to say we had a fabulous family dinner together except that he insisted upon listening to Ethiopian music through his earphones most of the time. So it was my husband and me on one side of the social wall, with Nick on the other.
Anyone looking at us would see quite a familiar picture: a middle aged couple with their newly adult son, who is happy enough to accompany them (and dressed nicely in white trousers, as it happens) but really interested in his own stuff, the music on his iPhone, the food on his plate. The couple talk together and every so often try to engage their son who is polite, but really only wants to return to his music.
This is normal, right? All of you out there experience the same? It only looks normal on the outside, which is how autism so often presents itself. To the observer, everything is typical and fine, even quaint. But it is this disconnect of which I am acutely aware and that I look at the way one might a massive geographical obstacle that needs traversing. I want to cross that divide. Nick will allow me to so–he never tells me to get lost. If I want to learn Amharic (as he is) or learn all about ganna, which is his current passion, he will help me.
And I do this. I enter in, but am I entirely right to enter in? How much should I ask that he step into the social world of his family and peers, however dull that might seem to him? I am willing to believe anything right now–that I am unfairly critical of my son, a natural anthropologist. That I should interfere with his flights of fancy or even consider pharmacological intervention. In short, I don’t know what to do. He is fine now because he can lean upon his fully functional parents. But what happens when we become ill, then die?
The government seems to think there is nothing wrong with him and he needs no support at all after we’ve gone. His diagnosis–autism–holds no sway with the bodies that are meant to support those with disabilities.
In short, he has no disability–and remember that picture I painted? Middle-aged couple, nicely dressed son with his iPhone? Who would imagine he needed any help? No one, but only if you look from the outside and not at what is really happening within. That must be ignored–by everyone, it seems. I, myself, participate in this hiding and concealment, painting a picture of what I imagine to be a perfectly normal family. At the restaurant, in the church, wherever we are.