All posts by Stuart Neilson

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.

Continue reading Creating Autism – Perspective

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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New Book: “Knowing Why – Adult-Diagnosed Autistic People on Life and Autism”

I have a chapter in a new anthology of experiences written by 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.

The anthology is available in paperback (£19.05) or as a Kindle eBook (£9.99) from Amazon or from Barnes & Noble.

Continue reading New Book: “Knowing Why – Adult-Diagnosed Autistic People on Life and Autism”

Exhibition on “The Portrayal of Autism”

Autism by Irish province
A map of the most frequent words in news articles mentioning autism, by Irish province – different place, different autism?

In a few months (the whole of February 2019) I will be exhibiting data visualization, digital images and photographs related to the portrayal of autism in St Peter’s Gallery on North Main Street in Cork. The exhibition will be accompanied by presentations and a panel discussion open to the public. These include:

“Working with autistic people to make art”, “Special needs education and the formation of personal identity”, “An Autism-Friendly space initiative”, and “How disability and difference find spatial signatures”
and
A panel discussion featuring all speakers, open to questions

Much of the content is based on ideas and images that I have previously posted here, so you will have a good idea of what to expect if you look through my blog history. Continue reading Exhibition on “The Portrayal of Autism”

Interview article by Marie Walshe in Lacunae, July 2018

Lacunae, the APPI International Journal for Lacanian Psychoanalysis, Issue 16 (July 2018) is specially-themed to autism with a translated article by the brilliant Jean-Claude Maleval, “Mottron’s Autist is not Kanner’s”; an interview with Irish autist Dr. Stuart Neilson conducted by Marie Walshe; Rob Weatherill on fatherhood “Being (Not) in the World Without a Father.”
Editor Eve Watson writes “Highlighting the importance of first-hand accounts in approaching the subjective experience of the being on the autistic spectrum an interview with Irish autist, Dr. Stuart Neilson, provides a fascinating first-hand account of the lived experience of Asperger’s Syndrome. The interview was conducted by Marie Walshe, on behalf of Lacunae and shows there is much to discern from Dr.  Neilson’s personal narrative of living with Asperger’s.”

Motion and attention in the classroom (or workplace)

I have been making some images recently that attempt to capture, for me, the ‘feel’ of an event or action. Photographers talk about “the decisive moment”, the title of Henri Cartier-Bresson‘s most famous book (although the French title is actually “Images on the Sly”). I am thinking more of “the decisive motion” – what event, movement or attention-grabbing object fills the frame in memory? I have been taking short sequences of video and creating a single image from all of the frames, to locate images that capture my sense of memory.

The best of these include motion heatmaps, images coloured by the amount of movement in each pixel. In a classroom this should be a map of the things that matter (the teacher, friends, intentional moving images), rather than distractions (fidgeting, wafting posters and reflections). The image above shows areas of high motion (red) and stillness (blue) in a classroom.

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The sensory impact of story-telling

I think my relationship with story-telling – with books and films – is different from many other people’s relationship. This is especially so in the sensory impact of stories, where perhaps emotional and sensory feelings intermingle, changing the sense of the story. My perception of the story is different from the people around me. I don’t know how much of that is ‘autistic’, or neurological, or natural human variation. The colour we know by the word ‘red’, for instance, does not represent the same sensory experience for all people because our eyes and brains differ. The word ‘red’ itself also differs, through past association and learning. And – according to the Sapir-Whorf hypothesis – we might not even consciously perceive ‘red’ if we did not have a symbolic word to represent the sensation.

Putting stories into narrative text and films are relatively recent modes of story-telling. Looking at stories conveyed through a single, static image is very revealing of the amount we can share through one common sensory touchstone, assisted (we assume) by language, gesture and ritual. The touchstones remain, like Stations of the Cross, to remind and strengthen after the words have faded.

This post is part of a much bigger, more wide ranging look at what ‘autism’ means and where it comes from. I hope to have a display of related imagery and text ready around November of this year.

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Autism Documentary – Living positively in “The Moon is an Orange Triangle”

Last year I had the privilege of being asked to take part in the last of a three-series documentary on living positively with autism – in childhood, in teenage and now in adulthood. The documentarian, Alison Toomey, has a wonderfully light touch that creates the space for her subjects to speak their own words and, in effect, direct the outcome to express their priorities. Links to all episodes are here.

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Use your vote in the referendum on 25 May

On Friday 25 May Irish voters will be asked in a referendum whether they wish to remove the Eighth Amendment from the Constitution and replace it with the words “Provision may be made by law for the regulation of termination of pregnancies”. The full text of the proposed Dáil legislation has been published in advance and is available at the link near the end of this Irish Examiner article https://www.irishexaminer.com/breakingnews/ireland/watch-government-publishes-bill-containing-exact-proposed-wording-of-abortion-referendum-831699.html

In order to vote, you must ensure that you are on the electoral register before 8 May, which you can check at https://www.checktheregister.ie/

Fertility, sexuality and pregnancy are issues that are far more likely to affect autistic, disabled or mentally ill people. I am in favour of replacing the Eighth Amendment with sound legislation. It is really important for all affected groups exercise their own choices and vote, whichever way, for the outcome to reflect their views.

Continue reading Use your vote in the referendum on 25 May