‘8’ – Severe exclusion – sensation of being cut off from others by an invisible wall

…

‘10’ – Forsakenness – empties life of meaning, all possibility of connection seems lost

Daughter and mother spent the rest of breakfast talking about Kana’s research. ‘I know how important this is to you,’ Hiromi said. ‘Your life’s work.’

✲

Kana’s present work had begun three years earlier with an application letter for the research position of her dreams, at University College, London. After two weeks of waiting (and pacing, and nail biting), the centre’s response seemed on track to becoming the slowest in the history of email and Kana’s hopes were oh-so-close to evaporating. And then, well, you can fill in the rest. Fully worth the wait, the mail that came back from Dr Laura Crane. And, as it proved, a turning point.

During their video conference Laura had smiled a lot and called Kana’s CV impressive. A science degree from Northeastern University and a Master’s in Counseling Theory from Boston College. A distinction received in her Postgraduate Certification in Autism and Asperger’s Syndrome at Sheffield Hallam University.

‘I see that you would like to investigate loneliness in autistic adults using mixed methods during your PhD research with us at CRAE. Your input as a researcher with lived experience of autism will be especially valuable to us.’

This was what had attracted Kana to CRAE – the Centre for Research in Autism and Education – one of the few sites in the world where neurotypical and autistic scholars worked together to enhance science’s understanding of autism. The team had a core principle: that autistic people should be central to the production of knowledge about the condition.

‘We found your choice of research topic very interesting,’ Laura continued. ‘As you know, many scientists have long believed that autistic people prefer to be on their own and therefore rarely, if ever, feel lonely.’

These beliefs, Kana knew only too well, were flat-out wrong. But for a surprising amount of years, the scientists, all wrapped up in their theories, had seldom thought to ask their subjects how they were actually feeling. When they had, they used curious phrasing that could befuddle. Do you feel in tune with other people? In tune? Yes, in tune. No, I don’t feel in tune. (Under their breath, adding, Do I look like a musical instrument?) And so the scientist, taking up his clipboard, would tick ‘no’, and neither he nor the subject came out of this exchange any the wiser.

‘We are based at Gordon Square, close to King’s Cross’, added Laura, before warning that their offices weren’t the best environment for neurodivergent colleagues. ‘It’s an old building, but being listable there isn’t much that can be done to make where we work more comfortable. We’re on the fourth floor, but to avoid walking through other people’s workspaces it can be necessary to head down to the second and along a corridor before going up another staircase. Like a maze. And we’re on a busy road, often with construction work nearby. It can get very noisy in the summer with the windows open. No air conditioning unfortunately.’

✲

On the plus side, the Centre was close to everything. Shops and markets. Libraries. Transport links. Her postgrad student accommodation. The staff was small, work hours flexible and any social events up to her to take or leave. And the building had a certain charm, Kana found when she arrived, compared with the concrete of her home town. Yellow stock bricks, decorative ironwork – that sort of charm. Not to mention the adjoining public gardens where she ate her lunch with the squirrels. A local benefactor fixed his bronze gaze on her as she passed the iron railings. Some days the bald statue wore a pigeon for a wig, Mohawk style.

Kana was elated. More than elated – ecstatic. Here I am! she told herself, and it was as though she could feel those words rushing to culminate in an exclamation mark. In London, doing what she’d spent the past several years in the States and Britain preparing to do. How many other neurodivergent researchers had an opportunity like this, to research and publish, she wondered. Openings in her field were so few and far between. For hours at a stretch at her desk, she busied herself reviewing the existing literature on her topic; there were tons of papers but few that gave first-hand descriptions of loneliness on the spectrum. She examined the wording of these descriptions, how they voiced interpersonal relationships and the individual’s place in society. The ages and backgrounds of the study participants. Whether or not each description followed a researcher’s question. Which different factors were positively and negatively associated with feeling lonely.

In general, attempts to conform to neurotypical social behaviours led to increases in loneliness among autistic men and women, Kana’s analysis would go on to find. It emerged that trying to mask their autism failed to alleviate the subjects’ sense of not belonging. A far more effective strategy, her analysis suggested, was to encourage autistic self-esteem while building connections based on shared interests.

Once a week, Kana went to see Laura, her supervisor, to go over the progress of her research.

‘How are you finding everything?’ Laura asked after one of their meetings. ‘Are you fitting in okay?’ Laura was in her thirties, married with young children.

Kana looked down at her fingers and gave a shy nod.

She usually spent her downtime having tea and a breather in the Centre’s communal room. It was rather drab and poky. A sink and kettle and cups, plus a few chairs huddled together. On the whiteboard somebody had drawn the current research topics being explored. A man sitting with his head in his hands illustrated Kana’s. The man in the drawing could have been Kana herself some days before her life overseas, ever despairing at feeling like a foreigner in her native land and language. Those days at school when she spent an eternity learning to get the hang of kanji, feeling lost in the dense forest of the characters’ lines and dashes. Or other days when she couldn’t quite get what a teacher or classmate meant to say, and no empathy came for the confusion in her that their ambiguous words had created. Or still other days when she might look into someone’s eyes and not drop her gaze to their chin or neck as politeness dictated.

One spring lunchtime, as she sat on a garden bench with her sandwich, out of nowhere a gust showered Kana with cherry blossoms. In that instant she felt a sharp pang and knew that she was once again lonely. A ‘force 5’ loneliness, at least, because it hurt. She was homesick for her mom and her elderly sausage dog Sky. No amount of daily calls home, texts and video messages, could replace them. Homesick, too, for the friend she had left behind in Boston. Why did London have to be so far from Japan and Boston?

For a while she managed to keep it together, though the ache did not once let up. The construction work beside the Centre drilled into her nerves, and when she sat in her office the computer glared at her until she screwed up her eyes. (In her documents, she even switched the background colour from white to a soothing pale pink). By the autumn, she could tire just stepping from her lodgings to the Centre, the building’s yellow bricks struck her now as jaundiced and neither did she care for the ironwork. Inside, the maze of stairs grew more bewildering, and annoying, with each passing day. Finally, at the start of winter, she had a conversation with Laura. All the courage, curiosity and sheer single-mindedness that had brought her to Britain had slowly drained out of her. Laura understood. Reluctantly Kana left to continue her research from Japan.

That was in January 2020. The country was reporting its first case of pneumonia caused by a new coronavirus from China.

Two months later the world entered lockdown.

✲

Kana had hoped to become a full-time researcher in psychology, or possibly, a clinical counsellor – self-employed, ideally – and in the autumn of 2021, as she and her mother packed up their lives, she still did. But first, she had to wrap up her thesis; she’d do that in Okinawa now.

Bagel eaten, tea drunk, teeth and hair brushed, she returned to her room to perform some ballet stretches in front of the mirror. Still good for time before her day began. Levi knew to wait for her walk.

How much she aspired to resemble at all times this Kana in the mirror, who seemed so elegant in her gestures and in all her steps so sure-footed.

She stared up at the electronic clock display on her desk as she arched her back one last time and touched her toes. Wait two more minutes and the time will show prime numbers: 07.57, 07.58, 07.59. Now. She came out of her stretch, fetched the dog lead and walked her puppy out into the street.

This time next week, she said inwardly, she, her mom and Levi would be in Okinawa. She gazed up at the many telephone wires as they crisscrossed the horizon.

✲

In the boxes destined for Okinawa not one item came from Kana’s year in Tokyo. As the day of the move approached she had thrown out all her notes and planners and diaries from the period. Anything dated 2012. If she never read that date again, it would be too soon for her.

She’d got into Tsuda University straight out of high school, unprepared for the homesickness that awaited her in the capital. She felt out of place, unable to find her feet among the other students. There were none of the stones that she used to pick up and press into her palm on the way home from class. Her mind filled with the azalea bushes of her childhood. She wrote to her mom that she missed buying the groceries together, her walks with Sky, laying the table. Little things like that. Tokyo was too crowded and heaving. Frenetic streets and blank faces everywhere, and in these crowds she felt lonelier than ever. On campus she could go for days without exchanging a word with anyone. ‘I don’t know what I’m doing here,’ Hiromi read. ‘Nobody else seems to know either.’

The one good thing about her department – International Relations – was studying a foreign language. Changing languages – alphabet and all – made Kana feel like a new person, or perhaps simply closer to who she was inside. She was one of a handful of students who attended the Russian classes at Tsuda. She loved reading in Cyrillic, in particular a folk tale called ‘The Enormous Turnip’, anticipating the rhyme that capped each sentence, picturing the mouse (myshku) pulling the cat (koshku) pulling the girl (vnuchku) pulling the gran (babku) pulling the old man (dedku) pulling the turnip (repku) – ‘and they pulled it out!’

‘But the class I like best is English,’ she said to Ms Oka, who worked in the university’s counselling service. This lady was about her mother’s age, she guessed, with a friendly round face. Kana had reached the point where it was either see Ms Oka or quit university. ‘I’ve always been good at English, you see. Even though, more than Russian, you can’t always be sure how to pronounce what you read. That’s where my trusty old dictionary comes in. It spells out each word phonetically in an international alphabet.’

Why was she telling Ms Oka all this?

Ms Oka said, ‘That’s very interesting, Kana. Did you want to talk to me about anything else?’

It was just the two of them in the narrow room, their chairs opposite one another. Kana took her bag and retrieved a book. Not her dictionary, her diary.

‘It’d take too long to get into why I’m here, so I brought you this.’

It felt wonderful to finally open up to somebody in her mother’s absence.

Ms Oka asked if she was sure about this, handing over her diary, and she said yes – everything she wanted to talk about was in there.

They met once or twice a week after that, in the same room at the same time. Talking like this with someone, and being listened to, Kana began to understand what she was experiencing. It wasn’t only homesickness. Homesickness she could manage. This was something far stronger – loneliness unlike any she’d ever known. (Years later, putting on her researcher’s hat, she could say that it had been nearly off the scale.) She felt invisible. Only Ms Oka could see and hear her.

Ms Oka could see that she was losing weight. In her lowest moments she had no energy to cook and put a meal together. She lived on rice, quick and cheap and easy to make. For days, weeks, on end she ate nothing else.

‘Oka-sensei, what do you suggest I do?’

She suggested that Kana invite her mother to Tokyo.

When Hiromi saw her daughter, all forty kilos of her (thirty-eight and a half, to believe the bathroom scales, and every single gram of them weighing on her), she saw the extent of Kana’s struggles. The student had lost all the vigour gained from her mother’s cooking.

‘I didn’t want you to worry,’ Kana said.

They had to find a doctor, a psychiatrist, and consult him. Hiromi wouldn’t hear of taking her bullet train home before they did. It was evident that her daughter was in much distress. They went to one of those big glassy modern medical centres they have in Tokyo, where a pot-bellied man in a starched suit and tie bowed as they came in and sat around his desk. He had dyed black hair and eyes enlarged by metal-rimmed spectacles. ‘What brings you here?’ he asked Hiromi.