Two contrasting approaches to predicting (guessing) the outcome of an epidemic are 1) projecting data from similar situations observed in the past; and 2) modelling from varying degrees of first principles. Models must match reality for any reasonable usefulness, but are often extremely sensitive to intitial (unknown) conditions and the slightest variation in input parameters.
Here are both approaches, in broad outline, to generate boundaries around expected outcome.
Rosie Weldon received an autism diagnosis at 25, by no means either the beginning or end of her journey of self-discovery and world shaping. In her memoir, “My Autistic Fight Song”, she presents a raw, intense and very positive view into family, education, love and work from her autistic perspective.
Ian Dury wryly noted that anxiety crippled (his word) him more than polio and in his wonderful song “Crippled with Nerves”, anxiety is both disabling and a potential loss of social opportunity – but it’s a pain worth enduring for a sufficiently rewarding end result (marriage and two children, in his case). I’d like to emphasise the role of choice and (social) reward.
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.
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.
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.
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.
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.
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.
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.
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.