|AUTISM: An Insider's View
Giving their fictional counterpart destructive telekinetic powers provided some kind of retrospective imaginary
justification for the sense of discomfort they provoked. Reading King, I felt uncomfortable, too, but for a different
reason. It seemed to me, as I read, that the something King describes – the something “off” – was not only his
reviled classmates’ something, and his character Carrie’s something, but my something, too. I know what it is not
only to encounter the uncanny, but to be it.
There was always something “other” about me, and people noticed it. They couldn’t have said what it was they
were noticing, but they sensed it in the room. I noticed them noticing. Sometimes, as I was walking down a street
or a corridor, I would register that this person or that, was visibly disconcerted by looking into my face.
Sometimes they looked bewildered; sometimes they would even shrink back. It was the nameless something
at work. Some people sensed it as vulnerability, explaining things to me very slowly and carefully, or asking me
if I was OK. Sometimes people interpreted what they sensed as physical fragility and insisted on carrying things
for me when I hadn’t asked. Some people caught it the way predators catch the scent of prey. Some felt repulsed
or a little threatened and shunned it. Most people, at least some of the time, laughed at it. A few were drawn
towards it, and, when they laughed, laughed with it.
In his 1919 paper on the uncanny, Sigmund Freud quotes the influential German psychiatrist Ernst Jentsch, who
writes that “one of the most successful devices for easily creating uncanny effects is to leave the reader in
uncertainty whether a particular figure in the story is a human being or automaton”. One of the hard lessons of
my life has been the realisation that to register automatically as a fellow human to other human beings, it is not
enough to have a human body, a mind, the capacity to experience, bleed, laugh, etc, if somehow the way you
hold yourself, walk, dress, speak and arrange your face fail to combine in such a way as to signal: “I’m like you.”
People seemed to read humanity – or the lack of it – off the surface. What I learned from their responses to me
was that they could not always quite bring themselves to relate to me as human.
When you are not quite human, the assumption is that you cannot be hurt, that you can be talked about as if you
were not there. Being talked about as if one were not in the room – being objectified – is an experience most
of us have had at some time. Most of us have probably done it to someone else. We do it routinely to children.
Medical staff do it to patients. Along with the vast majority of other women, and some men, I have experienced
it as street harassment. (“Did you see her tits?”) It is at best awkward, and at worst humiliating.
It was partly the wish to avoid this humiliation that drove me to try to identify the thing about me that made people
react so badly; identify it with a view to obliterating it. When I was playing an improvisation game in a drama
lesson, and another girl made a pointed comment about a character wearing “white knee socks”, at which
everyone but me laughed, I took a quick look round at all the legs in the circle and made a mental note to
change what I wore on mine. When I was hurrying to an appointment at university, I heard laughter in front of me
and then a voice behind me saying: “What’s funny? Is it her running?”
I made a further note, to run as little possible in public. When I attempted to join a conversation at my first
workplace by telling a story that started with the phrase: “You know, once …” and one of the people I was trying
to talk to turned to the others and said: “You know, once … I forgot what I was going to say, but I’m sure it was a
hilarious anecdote.” I became positively phobic about using that particular opener ever again. A few months
later, I was discreetly – I thought – reading a book and eating a sandwich on the tube on the way home; this
time the shriek of laughter came from a woman a few seats along. She described me to her friend: “First, she
opens her mouth, then she picks a bit out of her teeth. Then she looks at it, then she flicks it away!” It was
news to me as well as to her friend: I had forgotten to remind myself that I was visible to other people even
when I wasn’t looking at them.
Over the years, I spent untold amounts of time and energy adjusting and tuning my surface so that it read more
smoothly, in the hope that one day I would wake up like Pinocchio, and discover that I was real at last. I was
always looking for signs that my efforts might be working. I married my husband because I love him, and had
our child because I dearly wanted one. But it is also true that I saw marriage and motherhood as proof that I
was getting there. As I navigated each coffee morning, shopping trip and school run, I marked every positive
interaction as another step on the way to shedding my uncanny skin. Occasionally, I would force myself to
mingle at a party: if I practised partying assiduously enough, I might actually enjoy it one day, and in that
moment I would become, in Carrie’s words, a “proper person”.
Of course, the moment never came. No amount of conscious adjustment can fully compensate for a missing
set of defaults. I accumulated failures and collected diagnoses – depression, anxiety, obsessive-compulsive
disorder. None of them were inaccurate, but they still left my otherness unaccounted for. Then, when I was in my
late 30s, my family went through a crisis, and my brother took his own life.
He had been struggling for a while. Not long before he died, he had been diagnosed with attention deficit
hyperactivity disorder (ADHD), and told me he was certain we all had it. I couldn’t pursue the question while our
mother was alive, but after she died of cancer three years later, I went back to it. While I was researching ADHD,
and failing to find myself, I saw a Facebook post from a woman I had known at university, announcing a
diagnosis of Asperger syndrome. I remembered this woman as sociable and empathic. I had thought
Asperger’s was rare in women. I typed “Asperger syndrome women” into Google – and there I was.
I was lucky: my county has an NHS service for diagnosing adults. I was also lucky to have an older cousin who,
in the absence of any living parents, was able to give the psychologist a sense of me as a small child.
Apparently, I walked on my toes, flapped when I got frustrated and talked at people. I brought along some
letters from my childhood: one from an educational psychologist who noted my advanced “reading age”, but
thought I may be deaf, and another couple from a speech therapist commenting on my lack of eye contact. I got
That was seven years ago. Since then, I have diverted some of the energy I had been pouring into the work of
changing myself into the more rewarding work of accepting my difference. I have learned about the cultural
history of autism and disability, about ableism and how we come to internalise it. I found other autistic women,
in books and online. Some, like me, could speak and write; some wrote beautifully, but could not speak. I also
found non-autistic people who wrote with love of autistic family members who were not able to speak nor write.
I learned that while some autistic people are not able to adjust their surfaces and might appear more “other”
than I do, I can still recognise their experience of the world and their embodiment as similar to mine. Then one
day, I sat face to face with another autistic woman for the first time, and saw in her expression not a reflection
of my uncanniness, but myself – my differently, but properly, human self.
- - - - - - -
Others: Writers on the Power of Words to Help Us See Beyond Ourselves, edited by Charles Fernyhough,
is published by Unbound at £9.99.
In the UK the Samaritans can be contacted on 116 123.
In the US, the National Suicide Prevention Lifeline is 1-800-273-8255
In Australia, the crisis support service Lifeline is 13 11 14.
Other international suicide helplines can be found at www.befrienders.org.
- - - - - - -
Dawn Cove Abbey
"Roadside Assistance" for your Journey through Life
- Dedicated to helping people return (and maintain) sanity and decency to life -
Comments and Inquiries are welcome
The writer Joanne Limburg always knew other people found her somehow unsettling – so much so,
she felt she identified with Stephen King’s Carrie. But it was only in her 30s, while reading about
autism, that she under-stood why.
"Recently, I taught a course that had Stephen King’s "On Writing" as a set text. The book opens
with a section called “CV”, in which he describes the experiences that formed him as a writer.
Exploring the genesis of his novel Carrie, he explains that its title character – the teenage outcast
who enacts a horrific, telekinetic revenge on her tormentors – emerged from uneasy memories of
two girls he knew during his own high school years.
These girls looked wrong, sounded wrong. They dressed in the wrong clothes. Both came from
unusual homes, but what made them – in King’s words – the “two loneliest and most reviled” of
the girls in his class was something less tangible than background.
Returning to the subject in his introduction to my edition of Carrie, he suggests that this was a
something “that broadcast STRANGE! NOT LIKE US! KEEP AWAY!”
King speculates that this broadcast occupied a “wavelength only other kids can pick up”, but I’m
not so sure people ever grow out of that receptiveness. They may learn to respond to it less
unkindly, but they still sense it. There is even a word for the experience of sensing unplaceable
The dictionary definition of “uncanny” is “strange and difficult to explain”. King grapples at length
with the question of what it was about those two girls that gave rise to uncanniness, but can come
to no definite conclusion.
From, The Guardian – July16, 2019
By: Joanne Limburg