Autism Interview #128: Dr. James McGrath on Representation, Transition Supports, and Reframing the Autism Identity Narrative

Dr. James McGrath is Lecturer in English and Creative Writing at Leeds Beckett University, UK. His book Naming Adult Autism: Culture, Science, Identity is available in paperback from Rowman & Littlefield International and his poems have appeared in various literary magazines. His next book will be a new set of experimental poems, titled an autistic figuration. This week he discussed autistic representation in literature, transition obstacles and supports, and reframing the autism identity narrative.

Describe the development of your awareness of your own autism.

I’m writing in 2020, and both medically and socially, understandings of autism are relatively new and still forming. When I was at primary school in the 1980s, there was little recognition of autism in comparison with today, so there was no real accommodation for it in mainstream classrooms. This led to many difficult situations in childhood. My most distressing experiences usually involved sensory overload, particularly from sound.

The major problem with sensory overload for me has always been that it halts my ability to communicate. It can send me into such a tunnel, it becomes impossible to express there’s a problem – let alone what the problem is.

I still experience it as an adult. I’ll sometimes be at a reception for a literary event, and I can’t hear anyone’s words clearly, including my own. Only afterwards do I wonder: Why didn’t I just tell the person I was trying to talk to that the noise was too much? Why didn’t I think to say: Let’s either do something about the noise, or go outside? But that’s what I mean about sensory overload and the ability to communicate. I’m aware of the pattern, but that’s not enough to enable me to alter it.

As a child, those experiences were particularly distressing. I’d usually just start screaming. As a toddler in a pushchair, the scrape of the wheels on a certain supermarket floor made it feel like my bones and my brain were vibrating. At the same time, the bitter reek of disinfectant (I was close to the floor, remember) made even breathing feel horrible. The only thing I could do was start screaming and crying. ‘Having a meltdown,’ as it’s currently known.

Other sensory experiences were less acutely distressing, but still enormously distracting. I’d sit through lessons not taking anything in, and being unable to answer questions, because the dazzle of sunlight on a school desk caused me such discomfort. To non-autistic people, that might sound a trivial thing. But if it does, well you can see how such situations are really problematic for autistics.

In my early twenties, after graduating, and after prompts from various people who cared about me, I began to read about autism. In doing so, I began to realise there might be a reason, and a name, for how I was experiencing the world. That was a relief: to know there were others out there. Reading the work of other autistic writers can be life affirming. 

As you read and learned about autism, did you feel it was positively or negatively framed?

It was both. Negatively, it was hurtful to see that so many of my natural ways of going about life were deemed socially ‘wrong’ in some way. The medical narrative is slowly evolving, but autism is still often discussed in terms of ‘lack’ of this, or ‘excess’ of that. These models can make it feel as if to be autistic is to be criticised.

But things are changing, and this is mostly due to autistic authors and scholars themselves. Dr Sonya Freeman Loftis, for example, and Dr Damien Milton.  

And of course, a massive part of autistic identity is how we conceptualise it ourselves. How we internalise wider social assumptions about autism and convention – but also, how we can transgress and continually reshape these. That’s largely what my book Naming Adult Autism is about. The last chapter is called ‘Performing the Names of Autism.’ It looks at how the meanings of ‘autism’ can be redefined by autistics themselves – rather than having the narrative of our identities being ordered by professionals who, though usually well-meaning, are also outsiders.

How have you developed a positive autistic identity as an adult?

The threshold of adulthood is often long, and is a point where structures drastically change for autistic people. Changes to familiar routines can be hard – and for many autistic youngsters, these occur just when access to support or services might lessen. Obviously, this is something staff need to be sensitively aware of, in schools, colleges, and universities. I’ve written about these issues in the book, in a contemplation of the autistic poet Les Murray’s piece ‘It Allows a Portrait in Linescan at Fifteen,’ about his then-teenage autistic son.

But at that very difficult autistic age of 15, I was very fortunate. The school arranged work experience for everyone in their final year, and I was sent to work in a large, independent bookshop for a week. I was extremely nervous at first, but it was an absolute revelation for me.

Image result for webberleys bookshop

The bookshop was Webberley’s, in North Staffordshire, England. Working there was like belonging to a small, independent university. Being there inspired and focused me into actually going to university myself – something my teachers, and me, had thought unlikely when I was doing my GCSEs, the results of which were poor.

Via Webberley’s, I went from being a troubled, bullied school teenager to being someone suddenly surrounded by these very kind, incredibly broad-minded people; mostly arts graduates. As well as books, the shop sold artists’ materials, and many of the staff were either artists or academics. It was quite a bohemian environment, so to witness this as a teenager from a rural village was just mind-shifting. I later worked at Webberley’s part-time for two years.

Suddenly I had all these much older friends, and they really looked out for me. I’m sure they could sense how vulnerable I was, but however many mistakes I made, the staff were kind and patient. That helped me to relax into the work – and I stopped making so many mistakes, because I was less nervous. 

Working at Webberley’s, I learned much more than I had at school. There were always people around who’d be enthusing about art, literature, science, music … but the greatest lesson of all for me was simpler.

Like many (though definitely not all) autistic people, I have really awkward physical co-ordination, and easily make mistakes. The lesson I learned from Webberley’s – the customers, as well as the staff – was that if people around me are patient, then my clumsiness almost seems to disappear.

So, for anyone working with a person who appears very nervous and clumsy, try to give them a bit of space. It isn’t always best to watch someone perform a task, especially if you’re in a role of authority. If you do want to watch a pupil, a student, or an employee perform a particular task, ask their permission first.

Anyway, to return to the question – I have a tendency to go off topic – being in a supportive environment was essential to my forming a more positive identity.

What are some of your favorite works of literature (fiction, nonfiction, children’s, adult, etc.) about autism?

A novel I love for its relationship to autism (as we now call it) is E. M. Forster’s Howards End (1910). It’s older than most other texts I’ve written about in the book. What I love about Howards End is how fortuitously but also how deeply it articulates certain aspects of autistic experience, via the character of Mrs. Ruth Wilcox.

Forster’s evocation of a middle-aged woman who most other characters view as very sensitive but socially awkward was really moving to me as I tried to adjust to knowing my own autism. How Mrs. Wilcox found shopping overwhelming, found social events confusing, and generally was totally lost at luncheon parties – those things really touched me as an autistic reader.

Most of all though, Ruth Wilcox has a deep love of her own living space and the nature surrounding it, and really comes alive there. The house and garden of Howards End remain the closest things she has to something constant in a changing personal and industrial world. Yet she is also aware she cannot hold on to this place.

What makes Howards End great?

What makes Howards End great for me is how it now speaks to us from a period before autism was medically recognised, but also a time before autism had become the subject of literary cliché. Howards End also remains one of very few novels to show autism intersecting with other aspects of more marginalised identities, namely bisexuality.

Mrs. Wilcox appears at least partly in love with the younger character of Margaret Schlegel. So there is also something about social anxiety crossing over with love itself in the novel. I haven’t really seen that done quite so sensitively in any novel that post-dates the cultural recognition of autism and directly names it.

My reading of Howards End is a queer reading, based on close reading. The next novel Forster began writing, Maurice, would address same-sex love in a much less clandestine style of writing.

Any other more recent texts with autism portrayals that you like?

Of more recent texts, Joanne Limburg’s poetry collection The Autistic Alice (Bloodaxe, 2017) is an extraordinary work. Spinning through a series of social situations that replicate the seeming absurdities of Lewis Carroll’s Alice tales, The Autistic Alice really highlights the contradictions of supposed social ‘normality.’

A different but equally powerful contemplation of autism weaves through Meg Wolitzer’s novel The Interestings (2013). There, we have multiple characters whose autistic ways of experiencing the world are conveyed very convincingly, though only some of them are ‘named’ as such. 

Lesley Bonneville’s novel Ta-Ra, Alice: Odyssey on a Shrinking Raft (2017) shows autism intersecting with wider experiences including the workplace, money troubles, and family life. Lesley Bonneville also articulates the experience of reading for the first time about autism via famous texts, including those (including the ‘extreme male brain’ theory) that many autistic women (and men) have described as alienating.

Lastly for now, the intersection of autism and aging is going to become an increasingly urgent topic. One author whose current work in progress addresses this is the Northern English author Peter Street – probably best known as a poet, but also a fine memoirist. 

What obstacles did you face navigating college and the transition to adult life post high-school? What supports were most helpful?

The biggest obstacle for me throughout much of my adult life – including university, then various employment roles – was both medical and cultural. I’m referring to the number of times that people (including professionals) would say to me things like ‘You can’t be autistic, you study literature! Autistic people are good at maths or IT, not creative writing!’ In other words, this culturally-reinforced preconception made it harder for me to be referred for assessment and therefore to receive diagnosis and therefore support. And that obstacle remains for many autistic people who may benefit from diagnosis. 

So the biggest obstacle was the cultural and also the medical assumption, which my work seeks to challenge, that autistic people are basically good at either STEM subjects (Science, Tech, Engineering, Maths) or… well, nothing.

My first book, Naming Adult Autism, criticises the scientific research that prioritises autistic ability only in relation to STEM subjects. There are quite serious risks of streamlining there future generations there, as a form of educational eugenics. I’ve summarised the main areas of work on this here: https://theconversation.com/not-all-autistic-people-are-good-at-maths-and-science-despite-the-stereotypes-114128

As it happens, I’m just about old enough to have experienced a different set of cultural expectations regarding autistic talent, and these in an odd yet definite way became part of my high school education. It’s easily forgotten now, but in the early to mid 1990s (in the UK at least) autistic talent did have a direct association with art.

At that time, there were two main cultural reference-points for autism, and they differed. One of course was Rain Man (1988), equating mathematical ability with autism. But there was also the work of the young autistic British artist Stephen Wiltshire, whose sketches of cities were regularly featured across the media at the time.

The public profile of a young autistic artist was a wonderful thing in the 1990s. It showed that autistic youngsters could potentially thrive in the arts. Teachers would comment to me on Stephen Wiltshire, and how well he was doing through autistic-ARTISTIC talent. But by 2001, the cultural interest – and with it, academic research – in autism and ability had shifted and narrowed. A consequence of this was the 2001 Adult Autism Quotient test – still used today – in which STEM talent is directly equated with autism, while any interest in the arts or humanities from autistic people was dismissed wholesale.

As I’m writing about science, I’m partly anxious that Naming Adult Autism will soon be dated. But still, the bigger part of me wants the book to become dated, because that can only happen when the Cambridge ARC either retracts or updates the 2001 Cambridge AQ Questionnaire to reflect the recent and current research on autism, STEM, and especially gender. Over about 40,000 words in my 120,000 word book, I explain where the flaws are in the questionnaire’s scoring and the consequences of this. The National survey of autistic traits is wildly inaccurate, in ways that mislead both public and professional understandings of autism! Each step of this explanation is fully referenced with all the bibliographical details available to the reader to double-check or (test) my findings.

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1 Comments

  1. Lesley Brierley

    Reply

    Dr McGrath’s work is fundamentally eye- and mind-opening. Naming Adult Autism is not a dry clinical book, nor a fuzzy anecdotal book, but an incisively well-researched examination of exactly who it is in our society that names, defines, diagnoses and decides ‘what to do about’ autism/A.S.D./ Asperger’s Syndrome. It made me realise and think about how much a diagnosis of autism relies upon other people’s opinions of you (i.e. neurotypical people’s opinions) and how – importantly – they also seem to take charge of its representations.

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