Living with autism
I am fairly certain that my father is autistic. I have always known that he was unusual but, perhaps oddly, I have only lately considered this in the context of autism. If I’m honest, until recently I had always viewed the concept of autism with slight suspicion, but now I recognise that this might have been because it was part of my family life from a young age. It wasn’t abnormal—it just described one of the people who was closest to me.
Autism has often been considered a condition of childhood, but in recent years the experiences of autistic adults have been recognised and validated. As a result, more people whose differences went unrecognised as children are able to seek a diagnosis. This can help some autistic people to understand themselves and find peace after years of feeling different or not good enough. A diagnosis can also help others to understand autistic people better, improving communication and relationships.
My father—who was happy for me to write this column and has read it—has a fascinating mind. He sees the world differently to most other people I know, and remembers the most curious details. His descriptions of synaesthesia make me wish I shared them—seeing numbers as consistent arrays of colours would be lovely. Sometimes I used to pretend to myself I did, but I knew it wasn’t really true. But then, at other times, he questions me intensely and I feel resentful— why can’t I remember the number for gold in the periodic table, or the opus number of the Haydn quartet I am trying to tell him about? I don’t retain these things like he does.
Autism in adults can present itself in many ways. Some people, especially women, learn to mask their differences. I’m not fond of the word “neurotypical”, as I think few of us fit into an exact model of “normality”, but autism tends to involve certain clusters of traits.
These traits can include having difficulties interpreting the thoughts and feelings of others, and finding communication challenging, perhaps appearing blunt or preoccupied with a particular subject. Some people may prefer solitude, have fixed routines or hobbies and unusual, or enhanced, sensory perception. Anxiety is common. This isn’t a comprehensive list and a diagnosis should only be made by a specialist. Some people will have many of these features but choose not to seek a diagnosis, which is entirely reasonable.
I love my father immensely, and would never wish that he was any different. But understanding his behaviour in the context of autism has helped. Communication has not always been easy, and I think that’s down to both of us. I had thought he was unable to empathise and that I was the one making all the effort—typical daughter!—and so I was intrigued to be pointed by Twitter friends towards Damian Milton’s double empathy problem. Very simply, this states that we all have empathy for others, but people with and without autism have very different experiences of life, which means that we may not “get” each other. It goes both ways.
Nothing has changed between my father and me. We meet and speak quite frequently, and I get annoyed with him for what seem to me to be his obsessions— his poetry, his table squash game—and he doesn’t understand my interest in any music from post-1850 (not a precise date, which he will pick me up on). Sometimes we seem to be talking to the person that we would each like the other to be: occasionally I think that I’d have preferred a parent with whom I could communicate easily. My mother still talks about an occasion when we were small, when she went out for the day, and he never gave us anything to eat. “But they never asked,” he said, surprised. Maybe it would have been easier to have a family where one could talk about things in a straightforward way, instead of never quite meeting each other’s eyes. My father is a lateral thinker and communicator, and this is frustrating at times.
But then I would have missed out on the joys of having a fascinating father, who told us stories, taught us chess and sees things in an entirely different way to anyone else. Sometimes I wonder what it would be like to be in a family where everyone was autistic or no one was—possibly easier. But through my father, I’ve had glimpses of another way of thinking to my own—one that has made my life immeasurably richer, and may help me better empathise with others. ♦
He questions me intensely and I feel resentful—why can’t I remember the number for gold in the periodic table?