Category Archives: History

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.

Continue reading Creating Autism – Conclusions

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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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”

A brief summary of Hans Asperger’s 1938 “Psychically abnormal child”

Hans Asperger first described the clinical findings that are today associated with Asperger syndrome in a workshop on 3rd October 1938, published as a 4,000 word article Asperger (1938) Das psychisch abnorme Kind. Wiener Klinische Wochenschrift, 49:1314-1317. In English this would be “The psychically abnormal child”, although it might equally be another term such as “mentally” if translated today. The following summarises the content .

Continue reading A brief summary of Hans Asperger’s 1938 “Psychically abnormal child”

Historical context of Asperger’s first (1938) autism paper

Hans Asperger published his first paper on autism in 1938 in German in the journal Wiener Klinische Wochenschrift [The Vienna Clinical Weekly], five years before Leo Kanner’s first publication in 1943 in English. These were by no means the first papers about “autism“, because the term was already used in the description of schizophrenia by Eugen Bleuler in German in 1913. Four strands of work – about autism and schizophrenia, in German and English – continued to both enhance and confuse the understanding of autism for decades. Most notably Asperger’s 1938 contribution was ignored as the pre-war prominence of Viennese medicine gave way to post-war shame and disgrace.

The transformation of “autism” from a predominantly German term in schizophrenia, to the predominantly English term we undersatnd is summarised well in the word-frequency plot of the publication sequence.

Word frequency of "autism" in German and English, 1900-1960
Word frequency of “autism” in German and English, 1900-1960

Continue reading Historical context of Asperger’s first (1938) autism paper

Autism in print news

News media both reflect the reality and shape perceptions about autism. This is an overview of the portrayal of autism in printed news in Ireland and the UK, with downloadable data files of the references and keyword counts for anyone who wants to examine the data. Any feedback on the existing results or further analysis would be most welcome. (Please note that the text of the articles is not included.)

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Autism in Irish print news media

(see the update to this post https://wordpress.stuartneilson.com/autism-in-print-news)

News media both reflect and shape perceptions about autism. As an overview of the portrayal of autism in the news, I have searched for articles about autism and provide a downloadable data file of the references with some categories that also appear in the article. Any feedback on making the file useful to other people would be most welcome. Please note that the text of the articles is not included.

Continue reading Autism in Irish print news media