It’s a beautiful winter afternoon, with the sun low on the horizon, bathing the room in a golden glow as I sit at the living room table with Ethan and his mom, Noa.

In my head, I am going through possible questions to kick off the discussion. I look at Ethan on the other side of the table. He is looking at his mom.

Struggles

Ethan’s life didn’t start with a diagnosis of autism. It began with an extraordinary fight for life. He was born in Madrid at just 24 weeks, weighing so little his parents could hold him in the palm of one hand. He spent the first six months of his life in the hospital, and at only four days old, he suffered a significant cerebral hemorrhage. When he finally came home, the future looked bleak. They pursued every alternative therapy they could find to counter the doctors who said he wouldn’t be able to do much with his body.

The diagnosis of autism didn’t arrive until much later, when Ethan was in the fifth grade. While his mother had always felt he was different in how he related to others, his other health issues and learning difficulties took up so much space that the idea of autism never came to mind. It was a therapist at his school who first asked about a diagnosis. At first, his mom was surprised, but when she spoke to his other therapists, they admitted they’d noticed things, but thought she didn’t want to talk about it.

For Noa, the diagnosis wasn’t a shock. She was already so deep in the world of doctors, therapy, and fighting for her son’s place in the world that autism was just “one more thing”. She saw it as confirmation of what she had already started to learn by reading a book on atypical intelligences that a therapist had lent her.

As his mom talks about his different health issues, gently encouraging him to chip in from time to time, he keeps looking at her, as if he were leaning against her in order to keep walking. “For us, disability has been a part of our lives ever since he was born. And I have no trouble talking about it. For me, it was more of a battle for life at first. All the progress he’s made and continues to make, carries me along, gives me wings to continue accompanying him on his journey.”

Interests and passions

Ethan loves reading books about current events, history, and new technology, and he loves to talk about these topics with others. He constantly follows international news in the press, on the radio and online, becming emotionally involved in what is happening thousands of miles away. Ethan is so passionate about journalism that he has already enrolled in some university courses as part of a non-degree program focused on intergenerational communication.

He also loves to travel, although on his own terms. When they go on vacation, Ethan will read guidebooks about the destination beforehand. His mother recalls with a smile that, during a trip to Mexico, while she, his father, and his brother stood in awe of a Mayan pyramid, Ethan looked for a minute and then returned to his book.

Beyond his love for books and travel, Ethan has a vivid imagination. His mother describes how he’ll often play with a small object, like a toy boat, and talk out loud, creating a whole new world. She thinks he’s mixing what he imagines with the current events he learns about, retreating into his own world when reality gets too overwhelming.

These days, Ethan has a packed schedule, including regular sessions of speech therapy, motor skill therapy, and aquatic therapy, as well as occupational therapy for his fine motor skills. His days are intentionally shortened to prevent exhaustion from overstimulation.

Bonds and shared interests

While his day at school may be challenging, Ethan’s mother feels he has a special quality that draws people in. In every class he’s been in, there have been a few students who found him endearing and formed a bond. There’s something about him that makes people feel a connection, even if they don’t have the same kind of relationship as other friends.

As we are talking about Ethan’s interests, he wonders why other people do not find those subjects as interesting and worth discussing as he does. His mom explains that people have different interests and these differences can also be a richness. She explains that even if he were to go to a school with only other autistic students, they’d all be different, each having their own interests.

“A school with only people who have the same interests as him doesn’t exist anywhere,” she says. “If you’re just surrounded by people who are like you, it gets a little monotonous.” His mom uses her own relationship with Ethan’s father as an example. “Dad and I are super different,” she tells him. “We can be together and be different. We don’t like the same things and it’s fine.”

When he was younger, Ethan had epileptic absence seizures, which his mother now understands as a way for his brain to simply say “stop” to the world. Now, he has other ways of coping with overstimulation, like going into his own world through his imagination or by reading a book.

Possible futures

I project myself into the future and try to imagine Ethan’s life. Of course, there are so many open questions about his health, his autism, and the way the world will change around him. But one can still dream. Will his fascination with history and geopolitics endure and will they lead him towards an academic path? Towards journalism? What about his curiosity to travel and discover places and cultures?

I watch him reading a book, sitting straight in an armchair in one corner of the living room. He is there and he replies politely to my “goodbye”, but he is mostly in his mind, traveling places, dreaming. The sun set, a quiet surrender of the day. The light it left behind is intensely orange at the very edge of the world, where just minutes ago the last sunrays clung to the horizon.