Lacunae: Interview with Stuart Neilson, on the Lived Experience of Asperger’s Syndrome

Last year I was interviewed by Marie Walsh for a special issue of the journal Lacunae, the International Journal for Lacanian Psychoanalysis. Issue 16 of Lacunae had a special theme of autism reflected in Jean-Claude Maleval and Michel Grollier “Mottron’s Happy Autist is Not Kanner’s,” and Rob Weatherill, in “Being (Not) in the World Without a Father” in addition to this interview. (You can read the full table of contents or buy a copy from Karnac Books).

The full text of the interview is reproduced below with permission. Marie Walsh did an excellent job of shepherding my rambling thoughts into a cohesive narrative.

You can cite this interview as: Walsh, Marie. (2018). “Interview with Stuart Neilson, on the Lived Experience of Asperger’s Syndrome”. Lacunae, 16, 54-63.

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Conserving accesible urban space

Urban space is changing fast and despite the potential to increase urban space through growth, technology and social progress, the reality is often increasing exclusion and isolation. My own experience is one of a city increasingly paved over, squared off, noisier and lacking in calm spaces. Traffic, busy people and blank commercial facades have replaced more welcoming districts, because accessibility and family-friendly features are not a developer priority – they maximise borrowings, ramp up local property prices, take the increase in plot value and move on. Sustainable community is not a short-term money-spinner.

My perspective is very much the social exclusion and sensory impact of unsympathetic development. This post includes some images of Cork City and data maps of changing city demographics, at the level of the 74 electoral districts, to outline how the city is changing.

Further reading:

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Sensory Issues and Social Inclusion

This is the full text of my chapter on sensory issues in public spaces, in the anthology “Knowing Why: Adult-Diagnosed Autistic People on Life and Autism”. The anthology presents contributions from a diverse group of people who were diagnosed autistic in adulthood. The book explores what it is like to feel so different, in so many ways, from other people without having known why; and then discovering that autism is not merely an explanation, but also an experience and identity shared by many others. Learning that your differences are autistic, even late in adulthood, is a positive event and useful knowledge for these writers.

You can purchase the book (and support the work of the Autistic Self Advocacy Network, ASAN) from Amazon, Barnes & Noble or Books-A-Million.

The book contents are: Emerging From Burnout – Erin Human; Being the Dictionary: On Passions, Diagnosis, and Integration – A.J. Odasso; Sensory Issues and Social Inclusion – Stuart Neilson; Working While Autistic – Kelly Bron Johnson; All of Me: How Do I Know Where Blackness Ends and Neurodivergence Begins? – Morénike Giwa-Onaiwu; Using Intersecting Identities and Radically Accepting Communities to Increase Coping Skills – Samantha Hack; Autistic Navigation of Chronic Illness, Mental Illness, and Healthcare – Amythest Schaber; The Spectrum and Depression: Four Stories – M. Kelter; Cyborgs, Luddites, and To-Do List Apps: An Autistic Use of Technology – A.C. Buchanan.

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Listen to the tone of my body language…

Nicole Kidman discussing her role in the film “Destroyer”

A lot of the video I have worked with looks at the large-scale motion of crowds and traffic, with a focus on how social infrastructure can invisibly serve our urges to wander, or visibly obstruct and contain those urges – sometimes with increased conflict as different wanderers are constrained into competition within narrow spaces. Amongst that video, however, some have included people talking, expressing themselves through their words, their gestures, and through the tone of their overall body language.

Body language and tone are very hard for me to interpret, a common trait among autistic people. We see that body language is present, and perhaps its intensity, but it is like sounds in a foreign language. Misinterpretation is frequent (there is proof in the dents in my shins from being kicked under the table), especially when the spoken and the body language are sending different messages.

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Game of Thrones

The prominence (and end) of the top 15 female and male characters in Game of Thrones over 8 seasons

Game of Thrones is an extremely succesfull series that has been the subject of several detailed studies of its content and portrayals. I am usually interested in the depiction of autistic and disabled characters, but Game of Thrones offers a great opportunity to compare my own techniques and visualizations with those created by others.

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The Rosie Result

The Rosie Result is the final installment of Graeme Simsion’s brilliant, funny and true-to-life observations on the life and love of the quirky, possibly autistic Professor Don Tillman.

Don Tillman is now back in Australia, as quirky as ever and as prone to inadvertent trouble as ever, except he has an 11-year-old son following in his footsteps and at the terrifying threshold before the transition from primary to secondary school. Both Don and Hudson find themselves in different kinds of deep mess, not entirely of their own making. Both cope in their own ways, prioritizing and sorting through with determination.

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Creating Autism – Conclusions

Creating Autism – a four-part posting
1 History – 2 Geography – 3 Perspective – 4 Conclusions

Autism: Nature, Perception, Word

Autism is a collection of natural phenomena, a syndrome of traits and behaviours that arise from neurological variations in early development. A combination of sufficiently clear autistic signs, in a particular set of combination, will be perceived by a trained observer as ‘autism’ and then assigned a particular diagnostic label for future intervention.

Autism is a set of perceptions and portrayals of autism, as specific characters in fiction, as stereotypes of what autistic people are like, and as psychiatric and educational expectations of how this diagnosis is managed.

Autism is a word, a symbolic shorthand used to simplify communication about a complex world of perceptions and phenomena into clear and concise language. ‘Autism’ is a special educational need and a residential care plan.

Autism exists simultaneously in multiple, overlapping plains – natural phenomena, perceptions, and words – that serve to both highlight and to obscure the people who inhabit the label. Being autistic means having some elements of the diagnostic criteria that make up autism, but in a unique and individual combination. Being labelled ‘autistic’ is a key to intervention and understanding, but the label also obscures the human complexity of the person who has been labelled. No two autistic people are alike.

Autism has changed dramatically since it was first used in its modern sense, and the label continues to evolve with scientific enquiry and professional experience. As a result, when two different people say ‘autism’ they are probably saying two different things. The autism of 2019 is not the same set of phenomena or perceptions as the autism of 1952. The autism portrayed by the character Raymond Babbitt (Dustin Hoffman) in ‘Rain Man’ in 1988 is not the same as the autism portrayed by Billy Cranston (RJ Cyler) in ‘Power Rangers’ in 2017.

Autism, being bound to perceptions, portrayals, individuals and events, means different things in different places. The presence of genetic research, community support, special educational resources, personal tragedy or charismatic autistic speakers all colour the reporting and representation of autism at specific times and in specific places. Self-image and self-worth are also coloured by public representations of others who share the same label. The attitudes toward people labelled with autism are shaped by public representation.

Choosing how to talk about autistic people – and the words are most definitely a choice – has a profound impact on how interventions for autism operate and how autistic are perceived and integrated within society.

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Creating Autism – Perspective

Creating Autism – a four-part posting
1 History – 2 Geography – 3 Perspective – 4 Conclusions

Language is a complex network of interconnected words, like grooves guiding sentences. Deeply-etched language grooves are easy to say or write, reinforcing common perceptions and misconceptions.

Labels help to identify common themes, interests and categories of people, guiding us to appropriate responses and to like-minded communities. But we should always see the person before the label.

Different word choices can centre or remove the person in a narrative – ‘autism’ is a noun and a subject in its own right, whereas ‘autistic’ is an adjective demanding a noun – a child, son, partner or other human subject.

A word diagram contrasting how Irish newspapers write about ‘autism’ (and possibly, but often not, person-first use), with how they write about ‘autistic’ subjects (and almost always identity-first language). It is easy to omit and forget the person when writing about ‘autism’.

Language is full of familiar patterns that are much easier to write or to say because they are widely used, often without much conscious thought about exact word choice. Familiar patterns of word use shape how we feel about a word – we talk about suffering from autism, or autism in a classroom. It is easy to forget to include the human subject in a conversation about autism traits, autism parenting or autism interventions.

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Creating Autism – Geography

Creating Autism – a four-part posting
1 History – 2 Geography – 3 Perspective – 4 Conclusions

Descriptions of autism vary between places, both globally around the world, between different languages and even between the provinces of Ireland.

An emotional tone is set by the words used, which is as real as the events reported – in comparison to Leinster, there is more anticipation and trust in Connacht; more joy and surprise in Munster; and more fear and sadness in Ulster.

Individual identity and self-worth are affected by the words and emotions other people use to respond to both the individual and to the group – autistic people – that an individual is labelled with.

A word map of the most frequent words in 3,500 news items about autism in Irish newspapers over the past fifteen years. Each word is sized according to frequency (big text for words used most) and placed in the province it is most associated with. What impact does it have to grow up in Munster, full of activism and community spirit? Or in Connacht, where autism is linked with gene therapy, research for future treatment and remote professors?
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Creating Autism – History

Creating Autism – a four-part posting
1 History – 2 Geography – 3 Perspective – 4 Conclusions

My exhibition “Creating Autism” is in St Peter’s Cork for most of February 2019, with a programme of associated events and talks. Please try to see the work as a whole in the gallery, and if you aren’t autistic, try to go with someone who is!

My preview video, text brochure and other materials will give you an idea of what to expect.

The exhibition puts forward the view that “autism” is a real, biological and neurological entity, but also an entire set of parallel meanings embedded in language and experience. These alternative “autisms” overlap, portray autistic people in different ways in different times, places and contexts, and are frequently quite incompatible with one another. We have the opportunity to seize the metaphor and create the autism we want – a consensus that will suit us individually to different degrees.

Some of the images use sampled video to create composite still images that explore my sensory experience of living in a city and sharing an environment that is often intense and alien, designed for a majority who either love sensory stimulation, or are simply not distracted and made anxious by sensory overload.

This story will be in four parts: this History, Geography, Perspective and some Conclusions.

One of the defining versions of “autism” is medical or psychiatric criteria for the diagnosis of autism. These have changed dramatically over the past seventy years. The title image is a plywood sheet with the words “creating autism” overlaid with printed text in layers. These are strips torn from pages of the Diagnostic and Statistical Manual of Mental Disorders containing the diagnostic criteria and descriptions of autism. The final layer of text in the collage is taken from autobiographies written by autistic people. (I am not a complete philistine, so these are colour photocopies and no books suffered in the making of this collage).

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