Autism Beyond Appearance

As an autistic child, imagination was somehow more vivid than the ‘real world’, to the extent that I didn’t always realise people were talking to me. I still recall the physical jolt when teachers would put their faces near to mine and yell ‘YOU’RE NOT LISTENING!!’ I wasn’t intentionally misbehaving. It was more that daydreaming was simply something that happened to me, without me quite realising. 

Perhaps it was intensified by sensory overload. I remember the lights in the classroom would make this sound that seemed to cancel out the teacher’s voices. For an autistic person, if there’s one thing worse for your senses than a grinding buzz, it’s a quiet grinding buzz.

Most of my first year at primary school seemed to involve making the same mistake in every maths (or ‘sums’) lesson. I just couldn’t process what I was supposed to be doing, so I’d simply copy out the sums instead of understanding them. 

It was the same thing I was told every day by my patient but weary teacher, Mrs Peterson. ‘James McGrath, your work is very nice, but you haven’t put the answers.’ It took me a lot longer than most children to understand what any of it meant. Of course, now that most of my work involves reading and writing, I sort of wish I’d said ‘There are no answers, Mrs Peterson. Only questions.’  Sometimes it takes me a long time to reply. But it doesn’t always mean I’m not listening.

AUTISTIC CHILDHOOD AND IMAGINARY FRIENDS

For this year’s Autism Awareness Week, I’d like to take a risk and share one of the first poems I wrote, when I was 18, before I knew I was autistic:

The Best Friend I Never Had 

You were my imaginary friend
and together, we wouldn’t explore
the world that didn’t exist
on my gran’s hall floor.

Together, we wouldn’t wander silver
forests that didn’t grow
from the leaves on the doormat.
We wouldn’t climb the trees
that didn’t reach the clockface moon
and together we wouldn’t sit,
not talking for whole afternoons.

The frosty morning tiles between
green carpet fields weren’t vast canals
where lines of matchbox barges 
wouldn’t harbour until dinner time.

The whisky jar wasn’t a castle.
Building blocks and tea boxes
weren’t factories that didn’t make antiques.
Old copper coins weren’t the dockers
and three skittles didn’t form a cathedral.
A biro lid wasn’t the bishop
and a marble not his cat.

And there we still don’t sit
within that distant indoor sky -
not resting on the clockface
as our world does not go by.

I needed you, so I believed in you.
We had some great days together,
you and me.
You were the best friend I never had. 
**

It’s probably obvious that the above is an early poem. But as my students are brilliantly committed to sharing some of their first writings, it’s only right that I should show the same trust.

Whereas most of my published writing on autism is written after diagnosis, that poem came from an earlier point. It was accepted by the author Hannah Pool for a page of new writing by students she edited in The Guardian Higher. This was in 1998. Then last year, 24 years later, something remarkable happened. 

A book dealer emailed me to say he’d found a cutting of my poem, inside a volume of poetry owned by a retired teacher, who had recently died – and the book dealer posted it to me.  I wondered if this teacher, who I’d never met, had once had an imaginary friend when she had been lonely too. That’s one of the most precious things about writing: you never know who might one day connect with it.

DISABILITY BEYOND APPEARANCE

During my twenties, I worked with homeless people for several years. This involved a Monday night soup kitchen, where we also distributed hot drinks, blankets and other essentials. In my thinking and writing about autism – and disability more broadly – I often reflect on the first thing I learned in my training for this work.

The lesson was to never doubt any person’s needs, and certainly not based on their appearance. Someone might visit the night kitchen wearing a suit – but they may have been made homeless that same day, and that suit could be all they have. Someone might even have a car – but has to sleep in that car. 

It was a lesson in compassionate thought, and in sociology, too – and it’s an outlook I always want to promote when discussing autism. 

For example, an autistic adult might have – or be capable of – high qualifications, but may struggle with filling in forms to the degree that their opportunities are limited.

An autistic person might be an attentive listener and strong communicator in a workplace, and yet find after-work social events almost impossible. 

And there may be autistic youngsters who struggle with GCSEs and A-levels (as I did), but might thrive in a university setting, where it’s possible to go deeply, deeply into an academic area you like, without being distract by other subjects.

What all this comes down to is that our needs as autistic people – like our abilities  – vary greatly from person to person. There’s a well-known saying in autistic communities: ‘You’ve met one autistic person, therefore you’ve met one autistic person.’ 

FACE BLINDNESS IN THE AGE OF LOCKDOWN

Like many (but not all) autistic people, I have often experienced ‘face blindness’. The medical term for this is prosopagnosia. It’s a word I still find hard to spell but in a way that feels right. The very sight of the word prosopagnosia almost seems to imitate what it describes.

Prosopagnosia involves difficulty in distinguishing and recognising people by their faces. For some, prosopagnosia can mean being unable to recognise immediate family. In my case, prosopagnosia is less disabling. I do experience it socially, though only if I am very anxious. More constant for me, however, is cultural face-blindness – and I have noticed it more during lockdown. Perhaps this is because of people wearing masks – and maybe even because when I join online meetings, I’ve grown used to seeing the person’s name on the screen.

On trying to watch new TV dramas in the last year, I’ve noticed myself struggling more than I used to in distinguishing the faces of actors, and therefore the characters. It doesn’t help that most actors tend to be very-conventionally very-glamorous – which doesn’t leave much room for variation, let alone diversity.

During lockdown, reading a book has been easier for me than watching a screen. For one thing, all my work is currently done looking at a screen. Reading is something I can slow down and speed up as I need to. It isn’t satisfyingly possible to do this (yet) with TV or film. 

When I start reading a novel, I make a list of the characters and assign a familiar face to them in my imagination – usually just someone I have known at some point. Even if I’m not studying or teaching the novel, I find it helpful to make brief notes on each character. This means I might read quite slowly, but in doing so, the experience of reading fiction becomes deeply immersive. 

CULTURE, SCIENCE AND STEREOTYPES

My book Naming Adult Autism is part academic study, part autobiography. I wanted to challenge certain assumptions which have dominated both media and academic coverage of autism, and the psychiatric discourse that surrounds the condition. 

A problematic stereotype for autistic people is the assumption that we are only suited to academic work in maths or science. We supposedly lack the empathy and imagination to understand the arts and humanities. 

This presumption has become so embedded that it even shapes the questions, and the scoring, of the largest-scale study so far of autistic traits in the UK population. I have previously detailed here how the science behind the ‘Autism Quotient’ questionnaire involved in the survey is itself flawed, and why it needs updating. 

According to one Autism Quotient test designed as a screening-tool to help GPs decide whether to refer an adult for autism assessment – indicating that you enjoy reading novels lowers the likelihood of you being considered (or recognised) as autistic. Yet for many autistic people, myself included, art and literature can actually be crucial in helping us to make sense of a confusing world. Art and literature enable us to express ourselves outside the confines of conventional social communication.

Dr James McGrath’s book Naming Adult Autism: Culture, Science, Identity is available in paperback and on Kindle from Rowman & Littlefield International. James is Senior Lecturer in Literature and Creative Writing at Leeds Beckett University.